This week, a look at a way of eating for all types of diabetes that sounds – frankly – really hard to do. But the guys behind it say it’s the key for lowering insulin resistance for all types of diabetes.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Robby Barbaro, MPH is the co-author of a new book called Mastering Diabetes. We’ll talk about what he actually eats now and why he’s so passionate about this. He has a pretty compelling story.
Join the Diabetes Connections Facebook Group!
Robby mentions Volumetrics (more here)
In TMSG – when an avid scuba diver is diagnosed with type 1, she finds a way to get back in – and under – the water.
Plus, a little bit of a control iq update for us – we’ll tell you how it’s working out.
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This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Episode transcription
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, I look at a way of eating that sounds frankly, really hard to do. But the guys behind it say it's the key for lowering insulin resistance in people with all types of diabetes, even so, it seems a little extreme.
Robby Barbaro 0:42
And I come down to the Christmas Day meal and I literally have a pyramid of bananas. We're talking four bananas on the bottom and three then to the true pyramid of ripe bananas. And that's how the practice was done. They were just shaking their head like this. They were kind of laughing and thinking this is not And Alas, there's no way because they've seen me try out different diets over the years.
Stacey Simms 1:03
Robby Barbaro is the co author of a new book called Mastering Diabetes. We'll talk about what he actually eats now and why he is so passionate about this. He has a pretty compelling story in Tell me something good. When an avid scuba diver is diagnosed with type one, she finds a way to get back in and under the water. Plus a little bit of a Control IQ update for us. We'll tell you how it's working out. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of Diabetes Connections. I'm your host Stacey Simms, so glad to have you along. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed right before he turned two and that was 13 years ago now. My husband lives with type two diabetes. I do not have Diabetes, but I do have a background in broadcasting in radio and television local news. And that's how you get the podcast.
A lot to talk about this week, we will get to Mastering Diabetes in just a moment. But I want to give you a quick update on our experience transitioning over to tslim X2 insulin pump along with a Dexcom G6 continuous glucose monitor. And then the Control IQ is the software that is in the pump. If you're not interested in this, if you're not using this kind of pump, or if you are on MDI or, you know, just skip ahead a few minutes. I do have time codes as always in these newer transcribed episodes for this year. So you can open the episode homepage, open the notes, and you can skip right ahead to the interview. But if you want to know about our control IQ experience, here's how it's going.
We were able to get the new software very early On we got it I want to say the third week of January, we did not get it without issue. Benny's pump was one of the few that could not be updated by plugging it in. There was some issue with the software update that was already in the pump. And even everybody who had that version of the software, only a very small percentage, my understanding couldn't actually plug into the computer and update. Anyway, tandem sent us a new pump with Control IQ on it. And of course, I was to send the old pump back. So we updated immediately it started doing its thing. I will go into more detail about after a month of using it, we're going to sit down and talk about it. But Wow, it really made a difference right away.
The problem was that it was tanking him he was going low, overnight, every night. And I try to not make changes until about two or three days. Right. We have to kind of see how things go. You don't want to overreact. So he went low the first three nights. And then of course we changed it because I'm talking down to 40 you know for extended periods of time. We cut way back on basal. We also cut insulin sensitivity, which really shouldn't affect it when it's in that sleep mode because the sleep mode doesn't give boluses. But we cut back on that anyway because it seemed to be having some issues with corrections during the day really making him go lower than he should have been having to suspend insulin. After that. It really smoothed out. He was using less insulin. He was in range in a very much increased amount of time. You could see his numbers were coming down. It was really cool. Even on a day where he completely forgot to bolus for a big brownie in the afternoon. He went way up, but he didn't stay up. And if you've done that, you know that at least for us, you know if you have like, I mean really, let's be honest, 50 uncovered carbs 40, 50 uncovered carbs. You're going to go up to 300 and stay there for a while. But Control IQ. He did have to bolus but Control IQ brought him down really quickly. It was great.
But unfortunately, it didn't stay great. About two weeks in his pump, the brand new pump that they had just sent us with the update, gave us one of those alarms that you can't reset. Oh my goodness. So I was actually on my way out of town. That was the weekend I was heading to Maine. And Benny was going to be leaving that afternoon for the two day wrestling tournament. So again, he could have done shots, but we were just like, oh, my goodness, you know, what are we going to do? Well, I hadn't actually sent that other pump back yet. It was on my list of things to do, I promise, but I hadn't gotten around to it. So luckily, he put on the old basal IQ pump, the previous software, my husband called tandem, and you know, they went through the troubleshooting is this an alarm that can be cleared? It could not. So they overnighted another Control IQ pump, and I put return the pump on my list of things to do yet again, but then, okay, so then he is at a two day wrestling tournament. It was supposed to be one day, unless they won, which they did, which meant they went to the state championships which spoiler alert, they won. So it was two days of travel and crazy food and then celebration food. parties. Oh my goodness. And as you know if you've been listening while Benny's not actually wrestling this season, he's actually more like the manager because he hurt his knee. So he's doing great, very exciting to be a freshman and have the first school state championship for the wrestling team was very, very cool.
But anyway, alright, so back to the pump situation. So then on Sunday, he's home. He's got the new control, like pump on and then early Monday morning, I want to say five o'clock in the morning, transmitter failure. Not you know, we're not sure not sensor error, not sensor failure, transmitter error for the Dexcom. So Benny turned it off. I didn't even know he just kind of clicked off and went back to sleep until six. I mean, he got one more hour of sleep. That transmitter was two weeks old. It's not supposed to crap out that early, of course. So we had to pull the sensor the transmitter put a whole new set on. Of course I called Dexcom. They replaced everything. But then we're another day really a day and a half between everything that was going on with that. Control IQ so I can say what it's working thumbs up when the technology's not working, which will happen, right? He's fine. I mean, we could always go back to shots, certainly, but who wants to do that? So little frustrating, but we moved forward.
The only advice I have if you're about to start Control IQ, if you're thinking about it, if you haven't made the switch over yet, is, I would highly recommend and please talk to your endocrinologist before doing this, make the change for insulin duration, change over to five hours now, because that's not negotiable on the Control IQ system. And most of us have it set frankly, incorrectly, because we're making up for it in other ways. A lot of studies have been done in this I'm sure if you're familiar at all with Control IQ, you've heard this, but if you haven't, one of the things we did was set the insulin duration to five hours several weeks before starting. And I think it really helped us in the transition. Something to think about something to talk to your endo about and then you just Gotta be patient, make changes slowly and let it do its job. It's so hard when we're used to managing these dumb pumps, right and do this, do that and stay on top of that. To let it do its thing is very difficult.
Okay, let's get to Mastering Diabetes in just a moment. But first Diabetes Connections is brought to you by Real Good Foods and new brand new from them stand alone crusts, so you can create your own pizza but whatever toppings you want, but this is a cook and serve pizza crust, grain free. It's made with cauliflower. I mean, you know Real Good Foods. They're delicious. high in protein, low and carb grain free gluten free. Lots of varieties. I mean, they have the pizzas that have great toppings on them. They have stuffed chicken, they have breakfast sandwiches, huge variety. I like it because it's really easy to find in my grocery store freezer, but you can go online and order the whole shebang. Find out all the different products that they have and mix and match. Find out more go to diabetes dash connection. dot com and click on the Real Good Foods logo.
My guest this week is one of the authors of the new book Mastering Diabetes. These guys also have a podcast, Robby Barbaro and Dr. Cyrus Khambatta say, focusing on lowering insulin resistance through food is the key to living well, with all types of diabetes. Robby lives with type one. And I promise he's really not saying anything out of bounds here, like, you know, this is going to get you off insulin or this is a cure, but there are some unconventional thoughts that he shares in this interview. As always, when I talked to people who are focusing on a particular way of eating, and I do this all the time, we've talked to people who eat low carb people, you know, high fat keto, people who are making these claims on the podcast. This is not something that I verify or confirm during the interview, and do my best to give you all the information. But again, before you make any changes, please talk to your endo. I really did enjoy talking to Robby. Here's our conversation.
Robby, thank you so much for joining me. I am so intrigued by everything I have read and heard. Thanks for coming on,
Robby Barbaro 10:09
Stacey. It's really an honor to be here. I love your show. And the fact that I'm getting to be on it is just really exciting to me.
Stacey Simms 10:15
Oh, thank you so much. We have so much to talk about. I have so many questions for you. But I want to start at your beginning. You had a fairly typical from what I seen onset of type one diabetes as a teenager as a tween, really, but you were diagnosed by your brother.
Robby Barbaro 10:31
Yes, it truly is a fascinating story. So I'm on January 26. That'll be the day that I have lived with Type One Diabetes for 20 years. So I was 12 just about to turn 13 and I complained to my mom, I said, Mom, I am thirsty all the time. I'm going to the bathroom all the time. I think I have diabetes, just like Steve so I have two older brothers. The middle one Steve was diagnosed with Type One Diabetes eight years prior to me and I was pretty sure I had diabetes around said no, no, I don't think you do. Don't Don't be silly. I said, Okay, fine. And then eventually, she went out of town to go look at homes in Florida where we eventually moved. So it was just myself and my middle brother at home. And she called the check in and she said, Hey, how are things going? I said, Mom, I couldn't sleep last night, I was cramping. She said, Okay, go upstairs. Use your brother's bug because meter test yourself. And I was well over 400. And my brother said, right there in there, okay. You have Type One Diabetes pack, your bags are going to be the hospital for a few nights. So we went to the regular general doctor, they ran a few tests. And I remember the doctor coming in said, Yep, you have type one diabetes, we're going to send you to the hospital.
And that was the first time I had seen my brother crying, as you know, as an adult. And he said, Oh, man, just sorry. You have to experience this too. And my parents flew home the next night. And this mother thing that really stayed with me as my dad saying, Don't worry, it's just an infant. convenience, you can still do whatever you want in life. And that was really the mentality that my parents had. And really, they were very, very supportive, very encouraging. And really let myself and my brother really take charge of our diabetes care. And, you know, we were we were both already, you know, type a people that really were on top of it, and we had good medical care from the Mayo Clinic. So it didn't really crush me. You know, I really had a really supportive environment had the tools I needed, and it just began a new life with Type One Diabetes.
Stacey
I'm really intrigued by your brother's reaction because on the one hand here, you have a brother who's nine years older than you you look up to him, I'm sure and you see that he's probably doing pretty well with this. So on the one hand, it's okay I'm gonna be fine. But then he gets emotional. And he says for you, so that's the had to have been tough to digest as a kid, like I'm going to be okay but there is the sadness too
Robby Barbaro 12:55
play the sure the whole thing was honestly it kind of like, I can I sort of remember certain bits and pieces. I remember driving in the car and talking to my parents on the phone. And just it didn't really, it didn't hit me like I didn't kind of fully understand what was going on. But I guess I just ease into it. And at some point, I guess you just you don't really have a choice. It is what it is, you know? Yeah,
Stacey Simms 13:19
no doubt. So the years go on, I assume that you were treated more traditionally in terms of you start on insulin, you're eating particular diet, you know, your parents are keeping you busy in school. But you had other health issues as a teen
Robby Barbaro 13:35
I did. I had plantar fasciitis, which was frustrating. I was a competitive tennis player. So that's really a painful, painful feeling in your feet when you're walking and trying to run so I would wear these big blue boots at nights to try and help with passive stretching to do plantar fasciitis. I had chronic allergies are all the time, so I took Nathan x and Claritin. D and I would still get sick. As a teenager. I had cystic Acme, which was really frustrating and I tried everything microdermabrasion treatments, laser treatments, oral creams, like oral medical or eye creams for my face and oral medications. Eventually, they put me on Accutane. And that's one of the most serious drugs you can take for acne, your parents actually have to sign a waiver, because some people have committed suicide and that drug. So I also had warts on my feet. So these were just a collection of you know, frustrating, I think, standard symptoms that a lot of people have. Wow.
Stacey Simms 14:33
So when did all the fruit stuff start? When did you decide?
Robby Barbaro 14:38
I mean, I'm sorry. Yeah. I mean, I'll tell you the journey to get into the fruit stuff. So growing up, this is when I was living in Minnesota, you know, doing standard diabetes care. I went to the Mayo Clinic in Rochester, Minnesota with a Vincent cloud, and we would go there and they just had a great team. We had an endocrinologist. I had a dietitian, I had a psychologist. So it was a team effort. There. And the key thing I remember learning from them was like using a log book and actually got quite good at that. But I had standard care. And my dad was into selling supplements through a network marketing company and getting exposed to what they were teaching and some of their educational material was the very beginning of me really considering Okay, wait a minute, there's something to nutrition there's something to diet outside of just following a standard American diet, not really thinking about it. So that was the beginning. And it was a slow evolution of learning. Okay, wait a minute, you know, trying to avoid additives or foods like MSG, like that's good. That's a good idea for your overall health. And I slowly progressed. Eventually, I came across many different lifestyles.
But as I was on this journey of learning as much as I could, I came across a book called natural cures they don't want you to know about by Kevin Trudeau. Now, I'm not recommending this book. This guy ended up in jail. Yeah, there's, there's some things I'm not recommending it. But I came across this book, and it planted a seed in my mind that you know what, maybe it's possible to reverse type one diabetes. If I just eat as healthy as humanly possible and I take care of my body. Maybe I can put myself in such a healthy state that my body will regenerate new beta cells. And now it's just it was the theory the hypothesis. Okay, wait a minute. Like, I know other people haven't done this. But hey, somebody has to do it first.
You know, for example, Roger Bannister was the first person to run four minute mile. And before he did, the smartest people in the world said that's impossible, your heart will explode. And once he did it, other people started doing it. So I do think we're gonna we're gonna figure this out at some point some way how to get beta cells to work again. Naturally, I do believe that but that's not happened. So I go down this mission of Okay, I will do anything and everything to give my body the best chance of healing itself. So I started learning about the concept of fasting. So fasting is when you when you go to bed at night, you're doing like a mini fast and you in the morning you eat breakfast you're breaking your fast and healing and regeneration happens over that time. So it's okay, you know what type of dietary habits can I do to increase the chance of my body healing itself. And this led me to try summarize, the first thing I tried was a Weston a price foundation diet, and that was eating a lot of grass fed beef. They advocate for raw milk, I remember going to farmers markets, and I would buy milk for cats because you can't sell raw milk to humans. And again, I did see some improvements as I cleaned up my diet and got rid of any sort of junk and processed food. There was definitely some improvements but I didn't see anything specific happen to my diabetes health or my insulin intake or my blood glucose control.
So I continue to learn more and learn more, and eventually, I came across a dive by the name of Dr. Gabriel cousins and He was in a movie and he produced a movie called raw for 30 days. And in this movie, he showed how people following his protocol, which is essentially a plant based ketogenic diet. He didn't call it that at the time because ketogenic diets weren't really popular, but that's what it was. I would eat lots of nuts and seeds, lots of vegetables and oil. Like that's basically where my calories are coming from on this phase one, Gabriel cousins program. And you gotta remember, everything I'm doing here is with this mindset of Okay, I'm going to reverse type one diabetes, I'm going to heal this is a strong live a strong motivation. So at this point, I am a freshman in college at the University of Florida.
Stacey Simms 18:42
Okay, I'm gonna stop you right here for the question. So you're trying this experiment, you're experimenting on yourself, basically, I mean, to boil it down. And were you still seeing your endocrinologist? Were they telling you dude, you know, you're losing weight. Let's be careful was anybody giving you a push back at that point?
Right back to Robby will find out what is endo said. But first Diabetes Connections is brought to you by One Drop. getting diabetes supplies is a pain not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strips plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to diabetes, connections calm and click on the One Drop logo. Now back to my interview with Robby and I'm asking him if with all the weird things he was doing with This end of gave him any pushback.
Robby Barbaro 20:06
Okay, it's a great question. Yes, I would see my endocrinologist every three months you know, you got to get your prescriptions and whatnot. And here's the interesting part I think probably a lot of people with type one are gonna have a similar experience which is unfortunate but they never asked me about my diet. Oh my god, I kid you I kid you not I have been through except for the Mayo Clinic Mayo Clinic they were very detailed. They asked me everything I need, they log it, they kept track of it, but after that, they had two different endocrinologist in Florida. And I think I've had one different one in Los Angeles and not a single one of them not a single appointment. Have they asked me exactly what foods do you eat? Not one.
Stacey Simms 20:48
You know it's interesting because I don't think our endo and Benny's a child obviously. So he hasn't really asked me what do you eat but the they sent us to a dietitian or a nutritionist years of years ago. We never really followed up but You know, he's asked us just kind of like, you know, what are you especially when he was little? What are your favorite foods? What's your favorite fruit? What's your favorite vegetable? You know, he would kind of play. He was great with kids, you know, and ask him about that. But we definitely talked about food and he knows how we eat. So that's really fascinating. All right, so you're on the sly, nobody's following up on you. You're doing fine.
Robby Barbaro 21:17
Yeah, I mean, and the thing the key thing was, I think, from the endocrinologist perspective, give them a little bit of credit, I guess, is that my a one sees were always quite good.
Stacey Simms 21:27
There was no need for them to go into.
Robby Barbaro 21:29
Yeah, exactly. There wasn't a need to like pride and how can I really help this guy? I appeared healthy. I all my other blood work was fine. My agency was fine. I think they did. Like Okay, he's doing great. Like, let's let's just call him the next patient. So at this point, this is where it gets interesting. Here's where I love to talk about the diabetes nuances because your audience because you're gonna understand this stuff. At this point. I'm a freshman at the University of Florida. And again, my mindset is how can I you know, take less and less insulin and eventually not need any That's the goal. And in hindsight, what I realize is What really matters is if you're taking lesson lessons one that's only really significant in regards to reversing type one diabetes, if you know you are also starting to produce more of your own, if your your C peptide level is increasing, if your beta cells are, you know, starting to become functional again, that would be a good thing. But in this case, I was dropping and dropping man. So I took at this point, I was taking 10 total units of insulin per day, I was using only fast acting insulin. And I was actually still doing it through MDI, which I would not recommend, but I would actually take small injections throughout the night, and I was eating 30 grams of carbohydrate per day no more than 30 grams. So my carbohydrate insulin ratio was three to one, and that's a metric of insulin sensitivity.
So you can calculate your 24 hour insulin sensitivity by taking your total carbohydrate consumption, dividing it by your total insulin consumption. This was good like I was getting so excited. Eventually I reached a plateau I thought it was dropping and dropping and dropping that just fader on 10. And the problem was, I had terribly low energy and I was losing weight. That was the big problem. I couldn't keep weight on. And I was on campus, several situations I just basically blacked out, I'd have to stop, you know, that feeling of Okay, wait a minute what's going on, I have to like, recalibrate, you know, get home rest. And it was scary. So I went back to my naturopath who I'd seen throughout high school who helped me with a lot of supplements and food sensitivities, stuff like that and say, Okay, what can I do next? And she's okay, maybe you could benefit from therapy. And I was like, okay, maybe I'll do that. But it was gonna be very expensive. And I was gonna have to drive from Gainesville, Florida to Tampa, Florida, to be able to do this. And I was ready to commit to it. I would do anything to continue pursuing this path. Now, before I committed I heard a podcast and this is where the fruit comes in.
So I heard a podcast from this guy, Doug grant, he's a chiropractor, and he was talking about how people who eat you know, healthy diets and you know, the fruit, that that can actually also help detoxify your body like the nutrient, the nutrient density can help your body eliminate, you know, heavy metals and toxic substances. So I'm like, Okay, wait a minute, this guy's tell me I get to eat all this fruit. He's telling me it's going to have these healing properties. This sounds a lot more exciting than doing the collation therapy. So I'm going to give this a shot. And that was the beginning of the journey of eating fruit. So this guy, this guy, Doug Graham, he teaches basically, you know, basically a fruitarian diet to a certain extent, I would not cannot comment on fruitarian I don't think I follow a fruitarian diet, but I started working with him. And in this is September of 2006, in December of 2006, is when his book comes out. And I read the book straight through and one of the testimonials in the back of the book is my my co founder of Mastering Diabetes, Cyrus Khumbatta. So his testimonials in the back he's also living with Type One Diabetes. He had this amazing transformation of his health and his insulin. sensitivity. And I was blown away. So I go Google his name. I learned some more. I see pictures of him on the internet like, wow, this guy's ripped. He's fit like, this is awesome. I'm really optimistic. I'm going to do this. And so I started working with Dr. Graham and I start eating lots and lots of fruit like literally the first week Ain't nothing but bananas. The second week, I hate bananas and lettuce. And then I continue to add model meals of fruit like this is the beginning I even much differently now. But
Stacey Simms 25:26
I can't wait to hear because this sounds horrible, but go ahead.
Robby Barbaro 25:30
It was really as kind of like, it was like an elimination diet to a certain extent. This is around Christmas time now of 2006. And I remember my, my grandmother was was in town for the holidays. And I come down to the Christmas Day meal and I literally have a pyramid of bananas. We're talking four bananas on the bottom and three then to the one true pyramid of ripe bananas. And that's how they eat for Christmas dinner. They were just shaking their head like this. They were kind of laughing and thinking this is not going to last so No I cuz they've seen me try a lot of different diets over the years and a little bit No, it's it's basically lasted for for 13 years now but again, here's the change the changes that I started eating all this fruit, you would think that I would then need absurd amounts of insulin to eat all this fruit so I'm eating nowadays 600 700 sometimes 800 grams of total carbohydrate per day, and the insulin I'm injecting is somewhere between like 25 and 35 units I mean, depending on how active I am, depending how consecutive my fitness has been, but like I have some Instagram story how so people can see all the details recently, it's actually been under 30 units. But the here's the the percent change. If you can't do the math of that say, like little over 30 units per day and like 700 grams carbohydrate, you're going to come up with a 24 hour insulin sensitivity ratio somewhere around like 22 to 124 the 126 to one that is a 600% change in total this instant sensitivity going from three to one to 25 221 so I'm eating all of this carbohydrate energy, but I'm not needing excessive amounts of insulin, I'm actually using a physiological normal amount of insulin. I think that's an important goal for people living with Type One Diabetes is to live a lifestyle where the insulin you're injecting is close to what your pancreas would have normally been succeeding prior to being, you know, having beta cells and not working properly.
Stacey Simms 27:28
Wait, wait, let me stop you there, because and I had lots of questions about the food. But what you're saying about the normal amount of insulin is not what I was taught. I was always taught that if my son didn't have diabetes, his pancreas would produce whatever amount of insulin he would need. So I mean, let's say you know, we're not talking about someone who's going to spend 20 years eating high fat foods, fast foods, people cupcakes every day. Let's say someone who has you know what kind of an everything in moderation diet, wouldn't their body just produce whatever amount of insulin they would need? Or have I? Is there a study or something that says no, no, you should only be producing 30 units of insulin a day?
Robby Barbaro 28:06
So it's a great question. It's an important question. So there is research that shows how much insulin a healthy human will produce, you know, over a 24 hour period, and it's somewhere between, you know, 25 and 50 units per day. That's fascinating.
Stacey Simms 28:22
I'll have to look those up. Because I really didn't realize there was a, you know, kind of a standard or normal, I just thought it was okay, if you're eating this, then that's what your body does. If you're a teenager, then this is what your body puts out if you're pregnant.,
Robby Barbaro 28:36
Absolutely. No, there's like there's definitely a range. And you know, this definitely goes into the whole research of insulin resistance and what's happening in pre diabetes and type two diabetes and you know, doctors who monitor fasting insulin levels and sort of markers like bad or to get an idea of somebody's state of health, which, again, I think it's an important conversation. That's not happening. often enough in the type one world, which is the fact that we actually can very easily monitor our insulin sensitivity type ones are the most fascinating test subjects for insulin sensitivity on a meal by meal basis. And that's sort of why part of the reason Cyrus are so passionate about what we do is because as people living with Type One Diabetes, we live, eat, sleep, and breathe insulin sensitivity on a millennial basis. And we know that that is the solution to people living with pre diabetes and type two diabetes that is the cause of their condition. It's insulin resistance. If you can learn how to reverse that and maximize insulin sensitivity and be able to utilize insulin that your pancreas is still producing, then they can just become free of diabetes. And this has been shown in peer reviewed research for almost 100 years now.
Stacey Simms 29:56
Okay, so let's go back to the food because If you told me that I was going to eat a pyramid of bananas, or Ooh, maybe add some lettuce, I would tell you that's not happening. Get out of the car, we're done. So tell me a little bit more about what you eat on a day to day basis, if you don't mind and I won't, you know, we all well, I won't judge I'm just going to say, tell me a little bit more about what you eat on a day to day basis.
Robby Barbaro 30:23
It's such an important question and I will get to what I eat. But I first I want to start off with the passion and understanding that satisfy both have for making sure that people who decide to you know follow our program or join our coaching program. Absolutely love every single meal. Like we are very passionate about that and we really work with people about getting specific feedback about the types of foods they like the texture, you know, the different flavors to add and like there's so many different ways to do this. You know, low fat plant based whole food approach that we're talking about. So we've actually put it into a very simple, easy to follow like traffic light system.
Stacey Simms 31:08
Okay, so tell me about that a meal about like a client would eat perhaps rather than what you're obviously able to limit yourself in certain ways.
Robby Barbaro 31:17
Yeah, so So basically, it's going to come down to picking specific ingredients. So we have a green light yellow light red light category. So the green light foods include fruits, starchy vegetables, lagoons, intact whole grains, then you have leafy greens, non starchy vegetables, herbs, and spices, and mushrooms, those are all the foods in the green light category. And any given meal we teach people can include any combination of those ingredients that they desire. And the reason they're green light on our program is because those are all they're very nutrient dense, they're high in water content, they're high in fiber, those are not unprocessed foods, and they also are low in their fat content. So that's really the key of what we're doing here. That's why I can eat so many grams of carbohydrate and not need an excessive amount of insulin and actually just use a physiological normal amount of insulin. It's because we have reduced our fat intake.
Stacey Simms 32:09
Okay, so give me an example of a green light meal like break it down, I'm looking at my plate what's on it.
Robby Barbaro 32:14
So for breakfast, you're going to have one to four of your favorite fruits. So this could be berries, pears, mangoes, papaya, bananas, you name it for your favorite fruits, then you're gonna have some some greens or non starchy vegetables. So it could be lettuce could be a rula. It could be cucumbers, could be zucchini, stuff like that. And also ground flaxseed or ground chia seed in order to make sure you meet your essential fatty acid requirements as an insurance policy. So just by having a small amount of those ground up, you literally automatically right then and there just in your breakfast meal have met your essential fatty acid requirements, even though it's not completely necessary because if you eat enough calories from Whole Foods You would also meet your requirements, but we're sort of doubling up and giving people an insurance policy. So fruit is our primary recommendation for breakfast. You can also have things like, you know, hash browns for breakfast, or, you know, this being breakfast dishes, there's a variety of things their lunch would include, for most people, much more starch, heavy meal. So that's things like potatoes, butternut squash, like a bean stew, something like that. But again, it's going to also have vegetables going to have herbs and spices going on, sometimes mushrooms, the after like a dinner meal. And again that that afternoon meals, the starch focus is allowing people to eat the bulk of their energy at that meal because that's when people are most active. And then you didn't have like a snack in the afternoon fruits a great snack, you know, potatoes are great snack, stuff like that. And then dinner would include, again, there's going to be a starch component of being component, maybe a fruit component, but it's going to be heavier on Vegetables because we are not as active in the evening most of us and that's a good time to really focus on the vegetable nutrient density. And then again like people could have like a dessert like a fruit based dessert. I like have something like an ice cream or something you take banana as you put it through a blender, combine it with some wild blueberries and you have it's really amazing it's delicious. So they're very simple meals like and again everything is is whole that's the that's the really the key nuance if somebody wants to like truly do it 100% but I also want to emphasize you don't need to do and hundred percent to get the results but that's unrefined whole ingredients combined into bowls. That's really how it goes. Right got
Stacey Simms 34:41
Robby Barbaro 34:51
So, again, this is this is the fun part about talking to people. You know, there's many people living with type one, type two The fact that we get to test our blood glucose on niobium basis makes this condition very unique. So if somebody has heart disease or they have cancer, they can't really see that, did things get better or worse based on that specific meal, you don't really know they don't have a key metric. So I'm sure a lot of people listen to the show, have eaten a potato, eaten a starch, heavy meal, eaten some bananas, and they just saw their blood glucose skyrocket, and they're like, man, how is this guy robbing? that food is not the reason that I just saw my glucose meter go to 202 5300. And here's the deal. This is the eye opener. What's happening in that case, is you're likely again, this could be nuances around insulin timing, which I will get into for type one diabetes, but in general, let's say we're talking about type two. The reason that when you ate the banana you ate the chemo. You saw a bug because is because you're living with insulin resistance. It's because what you ate prior to that meal, which has brought about the state of insulin resistance, and what that is, insulin resistance is when your body is struggling to take glucose out of your bloodstream and into your cells. All right, and this is caused the primary cause is when there is fat stored in cells that are not designed to store fat. So your adipose tissue is designed to store fat, okay, you're supposed to have a little bit of fat in your muscle and a little bit of fat and visceral liver cells. But when you have excess, it inhibits the function of insulin, okay, influence sociopaths open the door and allow glucose to go everybody stream into yourself. When that function is not working. Your blood glucose level goes up and up and up. And that's what's happening and pre diabetes and type two diabetes that's the cause. Now, this is also a major problem for people living with Type One Diabetes Type 1.5 diabetes and insulin dependent type two. So the insulin we're injecting in Is it working as efficiently or properly, and that is the resolve. That is why a high carbohydrate meal will result in a high blood glucose reading. So as you begin to lower the fat in your diet, and these cells that have fat that's not supposed to be there starts to get cleared out, all the sudden insulin works again.
So for me, I mean, for example, I just again, I'm on this whole crazy for people but I just had a lunch today that was 230 grams of carbohydrate at one meal. And I know that's more carbohydrate than some low carb people would eat an entire week. So I had mangoes I had white supposed to I had my Mesa potay I had spinach, I had a ruler, that was my lunch, I injected 4.5 units of insulin for that meal. And then I can see on my Dexcom I can see the profile it goes up, you know, maybe 131 40 comes right back down. And this is insulin sensitivity in action and anybody listening to the show can absolutely do an experiment and test that themselves and begin to observe. How can I make insulin work more efficiently in my body, it truly comes. It's wildly simple. It's wildly simple. It truly does come down to how many grams of fat you consuming per day. And we encourage people to use nutrition software to just observe this, just just gather data, just become consciously aware of how much fat you're consuming, and most people will are. It's very eye opening. It's very eye opening fat is hidden, it's hidden everywhere. And a lot of the packaged foods, a lot of simple foods have added fat to them. And it's coming in the form of oils in a lot of cases. And I'm in simple plant foods like avocados, nuts and seeds. They have a lot of fat in a very small quantity. So we're teaching is to have people not consume more than 30 grams of total fat per day. Another metric is to not exceed 15% of total calories coming from fat. Once you meet either one of those thresholds, you will absolutely positively see your insulin sensitivity improved. And again, I know in human biology, like there's a lot of complexities a lot of nuances in science, but this one is truly black and white. I have never seen one single exception in the hundreds of type ones that we've worked with thousands of people but hundreds of type ones. I have never seen a single exception of somebody increasing their whole carbohydrate content of their diet, while simultaneously decreasing the fat and not see an objective improvement insulin sensitivity they will eat more total grams carbohydrate and they will inject less insulin every single time and it will happen in a matter of days. So we run to me seed every time with retreats.
Stacey Simms 40:00
I just have to ask you. So the flip side of that is the very popular, low carb high fat diet where you're not supposed to have more than 30 grams of carbohydrates in a day. I thought that fat kept you fuller, right isn't important to have enough fat in your diet so that you feel seated.
Robby Barbaro 40:19
Okay, this is a such a fascinating cover. so important. So we wrote about this in detail in our book. And we have a whole section on calorie density and satiety. And the leader in this whole field of research is Barbara rolls at Penn State University. And she has done hundreds of studies on satiety. These are very complex studies to try and study human society and change the macronutrients of various foods is actually quite difficult. When you read the study design. You're like, wow, that's that was brilliant and very, very complicated, but it's fascinating research. And what she has found she wrote a book called volumetrics, which I'm sure many people heard about it was actually just ranked as far as like one of the best diets for 2020
Stacey Simms 41:05
volumetrics. I remember covering this like 20 years ago, the and I, what I remember from it the most is that it was all about you eat the same volume of food every day. So maybe if you had like more soup, you know, we're more healthier. So you're getting
Robby Barbaro 41:20
Yes, you're getting hit this. So the cover of the book is a bowl of soup, because her research is that society is basically water plus fiber, its bulk. It's those two things combined, which you didn't research of them isolated, like just drinking water alone does not have the same impact on society as when you have the water in a whole food with the fiber. So your point is very valid though, because So what I'm saying is there's a lot of research to point towards the diet that we're teaching here being very satisfying because of the bulk that's included the water and the fiber in every meal. So it's definitely satisfying Don't worry about that. But again, your point is valid. There are a lot of people who are doing a ketogenic diet. They're not, you know, following those principles and having a lot of bulk, but they are staying quite satisfied. So there there is an element of truth there. But when you look at the and again, that's anecdotal stuff, which I know we both heard, I have not seen much research, peer reviewed published research on that specific topic. So I think there's more to be studied. And I honestly want to have set up a podcast interview with Barbara rolls, just to ask her that specific question.
Stacey Simms 42:34
So funny, because I was a health reporter for a lot of my career. And I remember volumetrics and I drank a lot of soup. I remember it. So before I start wrapping this up, I do want to ask you, I know that your goal initially, as you said, was to try to reverse type one diabetes, right? What's going to cure this for me? And obviously you haven't stopped taking insulin. You're not at all telling people to do that. But when you look at how you're living, and What this plan and your partnership with Cyrus has led you to? Is that still in the back of your mind?
Robby Barbaro 43:06
It absolutely is in the back of my mind that we got to figure this out. There's so it just, I mean, Stacy, do you agree? Like, it doesn't seem that complicated? I mean, why can't we beta so why can't we just go? Like, like stem cells die all the time. And then there's new stem cells that create new ones, why the beta cells so difficult to recreate?
Stacey Simms 43:28
I'm not smart enough to know but I do think it's a lot more complicated. I mean, no autoimmune disease has yet been cured. So I'm very very very hopeful Don't get me wrong, but yeah, I don't I don't know that diet alone You know, of course will ever do it but I'm very the things you mentioned right there. I'm very, very hopeful about but are you still feeling like you're the walking experiment?
Robby Barbaro 43:50
So I couldn't agree more that my after 13 years of doing this, and you know, hitting plateaus of insulin use on two different approaches. I think it's good. I'll be more than diet as well, for sure. And I, hey, I would love to be the experiment like the first person that makes makes it happen. I would love for some miracle to happen. But yeah, it's it's definitely in the back of my mind. But I will definitely say it's not as much as the forefront as it was in the beginning. So the back of my mind is really the appropriate way to describe it. I think about it. I certainly try and be active in the community of researchers who's looking into this and learn from some of their research and glean insights. And I just I want to participate.
Stacey Simms 44:31
Excellent. So the book Mastering Diabetes is for everybody with all different types of diabetes. It's not just about type one, right?
Robby Barbaro 44:39
So the answer is yes. And it's really for people who are living with insulin resistance. So that's everybody with pre diabetes as everybody with type two diabetes, that's people living with gestational diabetes, and that's majority of people living with type one is 1.5 diabetes, and it's also people who don't have Diabetes yet. So in America, we have over 80 million people living with pre diabetes that don't even know it. And there's also a nurse, a big chunk of people who are living with insulin resistance who haven't gotten to type two diabetes or pre diabetes yet. So insulin resistance is really at the core of what we're teaching here. And the reason is, is because insulin resistance is the central node for a wide range of chronic health conditions. So when you're living with insulin resistance, you're increasing your risk for heart disease, for cancer, for chronic kidney disease for high blood pressure, high cholesterol, for rectal dysfunction, for depression. It's a long, long list of unfortunate conditions that are associated in some resistance. And that's part of the reason we're passionate about getting this message out to the Type One Diabetes community as well because we don't die of high blood glucose readings. We die of the complications of diabetes, number one being heart disease. So inside this book, we also cover the science and research of people who've actually been able to reverse heart disease and that whole connection between maximize your insulin sensitivity for your long term health, but also for your short term health in having more energy for getting rid of brain fog, for reaching your ideal weight. It really truly does come back to this one simple concept. If you can focus on how to maximize your insulin sensitivity, you are setting yourself up for success in the short term and the long term. So the subtitle of the book is the revolutionary method to reverse insulin resistance permanently in type one, type 1.5 type two, pre diabetes and gestational diabetes.
Stacey Simms 46:43
I'm really excited to learn more about you and you know, hopefully down the road we can have Cyrus on the show as well. But one more question before I let you go. What are you having for dinner tonight?
Robby Barbaro 46:52
Okay, so tonight I'm going to tell you exactly how
Robby Barbaro 46:55
I enter it into nutrition software. I personally enjoy and My food into nutrition. I like dialing in the ratios I really really enjoy the confidence Okay, this is exactly what I'm having. And I feel really confident in this specific dose of insulin. And for people who don't like using nutrition software, we advocate this idea of go to meals and you sort of know this intuitively as a type one mom but you make certain meals that you've you already know the carbohydrate concept is the same thing. It's one it's this apple, it's this potato it's this But whatever it is, it's some combination of these you know ingredients and I know this amount equals this many carbohydrates this my grams carbohydrate, and you know, we can know what to do so dinner tonight is going to include lettuce or rubella, oranges, mangoes, papayas, and carrots, and it's going to be a total of 110 grams of carbohydrates. And I will also add that this meal is going to have 2.6 grams of fat And it's all by itself naturally without having to add any specifically high fat foods. And in the book, we also go into detail about how much fat you need to absorb fat soluble vitamins. And the research on that is really fascinating. So I hope people check it out. Excellent. Well,
Stacey Simms 48:18
thank you so much for joining me. It's absolutely fascinating. I'm thrilled to have you on To learn more, because I've seen pictures of the fruits and the plates and the you know, I haven't seen the banana pyramid. But I've seen lots of stuff online. So I really appreciate you taking the time to explain it. Thanks for coming on.
Robby Barbaro 48:34
It's great to connect with you. And I really appreciate you having me on. Thanks again.
Robby Barbaro 48:43
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 48:49
I will link up more information on the things we talked about including some studies and some insulin resistance stuff that you might find interesting. I gotta tell you though, I was distracted. A lot once early in the interview and he was talking about bananas and he didn't tell him this I probably should have. I hate bananas. I hate them so much. I don't like the way they smell and like the way they feel I can't stand them. I do like banana bread. It's not the flavoring so much I guess when I think about it, although it's only banana bread. I don't like banana flavored candy. I don't like banana flavored ice cream. So when he kept talking about that, I was like, oh, enough. Okay, so I will link up more about Robby and Cyrus and their podcast and their book at Diabetes Connections.com
up next Tell me something good but first Diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one like we did. You hear rumblings for a long time about the teen years everybody dreads that. But you know it hit us at full force a little bit early. I was so glad we had Dexcom Benny's insulin needs started going way up around age 11. And he has grown. I don't know, seven inches. In the last four years, along with all those hormones swings, I can't really imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system, we can react more quickly to highs and lows, see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom G6 has helped improve Ben he's a one C and overall health. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, just go to Diabetes Connections.com and click on the Dexcom logo.
I always ask for good news stories in the Facebook group. It is Diabetes Connections, the group I really hope you can join us there if you're not there already. I love how the group is going very supportive. We talked about the podcast a bit but it's not just about that. So please come check it out and you know, find people That are well educated and smart and fun and living their best lives with diabetes. This week's Tell me something good is a story I read in another Facebook group actually and asked if I can share and Cindy said yes. So let me read you her post.
“Hi, I want to tell you about something I'm very excited about. I'm a scuba diver and an underwater photographer. I've been diving since 1985. I have over 1700 dives, but I got diagnosed with type one. Last June of 2019. I was concerned about ever diving again. That was my first question for the doctors. we dive in remote places we dive for weeks when we go but we went ahead and booked a trip in the Philippines. In January for three weeks we have been here before we know the manager we know a lot of the divers”
so she had a whole plan included wearing a Dexcom she was going to wear the Libra sensor as a backup. She brought in meter of course as a backup. She was wearing her Pump tantum pump went out of the water between dives, and bringing long acting pens for a backup. Here's what she did 56 dives in three weeks, dives were 60 to 75 minutes each. Each dive was 50 to 100 feet deep. She tried to get her blood glucose to about 140. Before going into the dive, she only missed one dive because of being low. She had to wait for numbers to trend up on another one. She did carry orange juice and snacks on the boat. She did plug in a few times to the pump to correct and she ran higher than she usually did, which you really didn't worry about. I'm so glad to hear this because it was her first time diving and overall her nights were nicely in range.
So she says “here is the exciting news.” Her Dexcom worked great. She had it kind of stuck under the wetsuit with a patch. She did a couple things to kind of keep it on but it didn't come loose. The Libra also didn't come loose. You put a patch over She let everybody on the boat know that she had diabetes. She wanted to make sure that people around her were informed. Her friend and her husband would check in every single time she was about to go under with, you know, what's your number. She also carried a tube of jelly. She says you can get this on Amazon a tiny tube of sugary jelly. You can break the tip off and squirt some in your mouth regulator and all that scuba gear, the regulator. She does give a little bit of advice for other divers here. I mean, she was a diver for 35 years before she was diagnosed.
This is a post in the type one diabetic athletes group on Facebook. But if you'd like to get in touch with Cindy, if you have questions, I have a feeling she'd be more than happy to help you out and I would be more than happy to connect you. If you're thinking about scuba diving and you haven't done it before or you are interested in getting back on the wagon if you've been diagnosed. She says that she really wants people to get back in the swing of it. She also says I'm not telling you how to manage your Diabetes underwater or telling you Dexcom works perfectly underwater. I'm just sharing my experience and excitement of being able to do what I love to do. And she posted a bunch of pictures. I will I'll share a couple of these in the Facebook group. I think this is excellent advice and I'm just so happy that somebody was able to get back to doing what they love after being diagnosed with diabetes because that's what we tell our kids right you can do anything. But you know, it can be complicated.
So way to go Cindy, this is fantastic. I'm so excited for you. And the picture she posted of the fish and some of the underwater stuff is breathtaking. Let me know if you have a Tell me something good story. It can be anything like this. It can be a milestone with your kids. It can just be something that is good news for our community. Email me Stacey at Diabetes Connections. com or posted on Facebook. Just tell me something good.
A huge thank you to everybody who has posted recently about the world's worst Diabetes mom, as I travel more and do this book tour, it is just incredible to hear everybody else's worst stories. I mean, we all have them. And to learn what the what the book is beginning to mean to a lot of people, I did have some interesting feedback. When I went to Maine, they've given it to their clinic, they the group that I spoke with, bought some copies, and gave it to their local pediatric endocrinology group to give to some newly diagnosed families, which I thought was fantastic. If that's something you're interested in. If you have a clinic, or a diabetes office, or a group that is interested in having books on hand, obviously you can buy them and give them out. But please get in touch with me. Because when it's a situation like that, I'm sure we can figure something out either discounted pricing or, you know, maybe we can find something I'm pretty good with sponsors. And I'd love to make the book available to more people and that hadn't occurred to me that clinics might want it. So if you're in I was interested or if you're a health care professional and you're listening, if you're a CDE, please let me know. I'd love to start working things out. I'm going to work on this on my site as well. But just let me know.
Coming up in March, I'm going to be in Wilmington, North Carolina, Winston Salem, North Carolina, and then out to Indianapolis. Can't wait to meet so many of you, as you listen and as you read, boys this fun. thank you as always, to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. In a couple of days. We've got our mini episode that airs on Thursday, and this week, I am going to be talking about when a child has a fear of diabetes, when you know, we tell our kids Oh, won't hold you back. But what happens when a parent tells a little kid No, it's not gonna hold you back and the kid says, I'm scared. I think it will hold me back and I don't want to do this new activity. This was a heartbreaker. So we're going to talk about it and kind of find out what to do. Alright, I'm Stacey Simms and I'll see you back here on Thursday.
Robby Barbaro 57:03
Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all rounds avenged
Transcribed by https://otter.ai
Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Learn more here
Join the Diabetes Connections Facebook Group!
Stacey also talks about what we can do about the price of insulin with Patients for Affordable Drugs founder David Mitchell and Lauren Stanford, the community organizing director.
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Episode transcription:
Stacey Simms 0:00
This episode of diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with Type One Diabetes available at Amazon as a paperback ebook and audiobook. Learn more at diabetes connections.com
Announcer 0:20
this is diabetes connections with Stacey Simms.
Stacey Simms 0:26
Hey, welcome to this week's minisode something a little bit different. I've been doing these short episodes all year long for 2020. And this is our first interview type episode. But I wanted to get some information to you that I thought would be interesting and helpful and about patient advocacy. So we're going to talk about what's been happening with patients for affordable drugs. I spoke about them. Last fall of it put out a report and I wanted to follow up on it. Of course there's a lot of information in the news these days about the price of insulin price of insulin There were advocates at State of the Union address. These are not the same advocates, but a lot of the same push. And I also want to talk about spare arose. So let's do that first spirit arose is an initiative that happens every year to help kids with diabetes in developing countries, so that they can get insulin. It doesn't take a lot of money to help out and it really does make a huge difference in the lives of these people around the world. Why is it called spare arose? Well, back in 2013, a group of people in the basically the diabetes online community realized that for the price of one rose for Valentine's Day, they could make a huge difference in the lives of children. So you spare a rose, you save a child, they've expanded it so that you can, you know, spare quite a few roses. There are different ways to pay for this. But it's really a very simple concept. Where does the money go? There is an organization called Life or child, and they partner with diabetes centers in places like Rwanda, Mexico, India, to give critical supplies to young people who really have nowhere else to turn. Right now, this program supports 21,000 people in 42 countries. And the goal here, no child should die of diabetes. If you'd like to learn more, I will link up everything in the episode homepage. You can see pictures of the families that have already been helped. You can read stories of kids who need help, and you can find easy easy ways to donate. So if you can possibly spare arose this Valentine's Day, it would be very much appreciated. We have done a lot on this in the past. I will link up a very fun episode we did a few years ago with Carrie Sparling and Scott Johnson and Bennett Dunlap, where we talked about this initiative. Gosh, it was probably 2015 maybe was 2016 but it was a while ago about learning more, and why I really do urge you to consider taking part in Spare a Rose
While you're learning about that initiative, I also thought it was a good time to take a look at what's happening here in this country, and what's going on with our communities struggle to get the word out about the price of insulin. And if you've been following a lot of this, it has really heated up in the last couple of years. It seems like a lot of state legislators are taking this on. But at the federal level, it seems like it is stalling and you know, what can we do? Well, patients for affordable drugs put out a report a couple of months ago now. And I want to follow up with them and learn more about what they're doing. What we can do what what can be done about the price of insulin because I think when many of us hear this, we feel like there's just nothing I can do. It's overwhelming. Politicians are just arguing they're never going to get anything done. Well that may be true, that last bit, but there is something we can do. So I wanted to talk to the founder David Mitchell and community organizing director Lauren stand I should note that since I talked to them, each are three, which they're mentioning here did pass the House at the time of this interview, it had not yet passed, but the Senate has not acted. I reached out to Lauren to get an update on that. And she said that they need to pass the health care package by May. So they are pushing for them to include s 2542. It is less far reaching than HR three, she says but would bring meaningful relief to many patients. This is also called the prescription drug pricing Reduction Act introduced by Senators Grassley and widen and it has passed out of the senate finance committee as of this taping in a bipartisan fashion. It has not yet passed the full Senate and it includes the following it would penalize drug makers for price gouging. It caps Medicare beneficiaries out of pocket spending on prescription drugs, and it requires pharmaceutical companies to justify high prices. I will link up information on this as well as h3 and the other items we talked about in the episode homepage. Here is my interview with David Mitchell and Lauren Stanford, David and Lauren, thanks so much for taking some time to kind of explain a little bit about this. I really appreciate it. Thanks for being here.
David Mitchel 5:18
Thank you, Stacey, for the opportunity.
Stacey Simms 5:20
Thank you for having us. Before we talk about the report itself, and you know what we can do as individuals. David, let me just ask you to explain a little bit about what patients for affordable drugs is all about. Can you talk to us about the organization?
David Mitchell 5:35
Yes, patients for affordable drugs is the only national patient organization focused exclusively on policies to lower drug prices. We're independent, we're bipartisan, and we don't take money from anyone who profits from the development or distribution of prescription drugs. We do two main things we collect patient stories elevate those stories to policy makers and elected officials and train people to be advocates Lowering drug prices. And we are building a community of patients and allies that can be mobilized in support of policies to lower drug prices, both at the state and federal levels. My wife and I decided to do this, because she's a cancer survivor. I am a cancer patient. I had an incurable blood cancer. My drugs are very expensive. They're keeping me alive, but they're keeping me alive at a cost list cost of $875,000 a year right now. And just one of my drugs and oral cancer drugs carries an out of pocket cost of more than $13,000 a year. So we have a personal experience here. And we're trying to bring that experience to bear to mobilize folks who are struggling with high drug prices, whether it's for cancer drugs or Crohn's disease, drugs, inflammatory drugs, insulin, there are millions of people who are struggling We're trying to help them have a voice and get something done that will actually lower the prices of drugs.
Stacey Simms 7:06
Was it your personal experience with your cancer diagnosis that led you to start patients for affordable drugs? Or had you been doing this and then this happened.
David Mitchell 7:15
I had been doing health policy work in Washington, DC for about 30 years, then I got cancer. And my experience as a patient was really searing for me to find out how difficult I prices could make trying to manage a chronic disease or stay alive with an acute deadly disease. And I became increasingly frustrated because there were no patient groups speaking out about drug prices. Literally one day I woke up and I had an epiphany. And it was, hey, maybe if nobody else is going to do this, you should try. And that morning, I went downstairs and my wife said, Honey, can I retire? Can I work for free? Can we put in some of our own Money and try and build an organization of patients that would fight for lower drug prices? And she said yes. So here we are.
Stacey Simms 8:07
All right, I could talk to you about the organization for hours and hours. But we're really here to talk about this report the truth about insulin prices. So Lauren, let me ask you, as a person who lives with Type One Diabetes, what do you get out of this report? what's the takeaway here?
Lauren Stanford 8:22
Well, Stacy, I will tell you, when I first read this report, it was kind of shocking. I knew the prices of insulin, were out of control, but just seeing it all written down and laid out. Like that was kind of horrifying for me as a patient. And I know when people in the community saw it, it was kind of the same feeling like seeing the chart with the prices just going up and up and up and reading about the 300% increases and all this and that it was really like startling, but really good information, but kind of heartbreaking at the same time.
Stacey Simms 8:56
Lauren, let's go through this a little bit, because in the report, you will Aren't pulling punches. I mean, there's a section here that's headline price gouging and price fixing. Tell us about that. So not pulling punches. Yeah,
Lauren Stanford 9:09
we're really there's a lot of facts in this. And I think that the spec facts kind of speak for themselves, the price gouging. You can when you're reading the report, you can see that the three companies Eli, Lilly, Sanofi and Novartis, they've all been working together, it seems and price fixing this insulin to keep raising the prices and the report, our chart goes back to 2001. And you can see since then there's been this steady increase from all three of them. It's just crazy. I mean, I can't put into words how exactly it makes me feel. But David might be able to speak a little more to the history of the price gouging and fixing
David Mitchell 9:47
Well, the fact of the matter is that those three companies have managed to take control of the global insulin market, and they have effectively blocked other competitors from entering the market with The enough competition to actually drive down prices. And rather than compete with each other on price, they are content to maintain market shares and divide up the profits and be able to keep raising their prices in lockstep. It's very important to look at that chart and see whether or not they talk to each other and say, Hey, we're going to raise our price 15% next month, or not, they can each see what the other one is doing. And clearly, none of the three is willing to lower the price in order to try and steal market share their content to keep high profits and divide them up. We're going to have to break that cartel in order to lower prices or develop the ability to negotiate with the three directly which is why legislation to permit direct negotiation by Medicare in this country for lower prices is so important.
Stacey Simms 10:54
One of the things that that strikes me when you use words like cartel and gouging and fixed is why hasn't the government already stepped in? If this is so blatantly obvious, right? Why hasn't the government stepped in and said, you cannot do this?
David Mitchell 11:10
Apparently, I'm not a lawyer, apparently, unless they get on the phone and say, we're going to move our prices 15% all at once and talk to each other about it. They are allowed to do shadow pricing under our current law, and they're allowed to see what the other one is doing and then just match the price. So long as they don't talk about it. You can see what they're doing. It's obvious, but under law, if they don't talk to each other and collude, it's a harder case to prove. That's my understanding. I'm not a lawyer, to say, however, that the government isn't doing anything about it. You have to put one word behind it and that is yet because there are plenty of bills in Congress that would tackle high drug prices. And would allow, for example, Medicare to negotiate directly with the drug companies, including the insulin companies for lower prices. And there are bills to encourage the development of more generic and biosimilar drives that would provide additional competition that would also lower prices. So there is a recognition that this is a problem. But as with every one of the drugs we're fighting for lower prices for enough has not been done yet. We have much more work to do. The fact is in our system, drives are supposed to get a period of time to make a lot of money when a new drug comes to market and then we introduce competition through generics and biosimilars to make prices go down. Insulin is the exact opposite. We introduce these three drugs and instead of prices going down because of competition, they just continue to go up. And it's because of the abuses of these companies engaging regulators recognize it And I believe that within the next couple of years, we will succeed in making insulin look like the more normal model of high prices end and prices go down.
Stacey Simms 13:12
One of the things that I think is really interesting in this report are the personal stories, because it's not just numbers, which are great and useful information. But there are faces and names of people who have rationed insulin who would talk about the struggle to afford it. And Lauren, I mentioned that you live with Type One Diabetes and you have for more than 20 years, can you talk about your experiences and of the people that you know as well because I know you have to know people who've really been in tough spots.
Lauren Stanford 13:39
Yeah, and I always say that I am definitely one of the lucky ones because I've always had help and support with paying for my insulin and I've had my parents to fall back on but especially through my work. At p for ad I've heard stories about I were talking with a patient Yesterday who has to sometimes not pay your electricity bill so that she can afford her insulin every month? And I just hear so many stories like that every day and it's awful. And I mean, Stacy, you know, in the community, I think there's been, I want to say a isn't he? We don't. There's been multiple people who have passed away, I think five in the last year from rationing insulin, and it's just incredible that this can happen in America. I can't believe it. And like I said, I talked to people every day that are rationing their insulin, and it's just outrageous and heartbreaking. And like we say to legislators, when we're on the hilar we hear in our stories, like insulin isn't optional for us and rationing isn't an option at all or it shouldn't be an option that people have to do
Stacey Simms 14:48
something to do. I think one of the ways in which my eyes have been opened in the last few years is you know, when when we're fortunate like you and I Lauren to have insurance, right, right go and I get my supply and my insurance pays for it and it's 25 bucks for me it's no big deal here and there, but then there was a time where we were one bottle short, and they said okay $300 Yeah, that one vial of insulin right you think you think who is paying these prices? Right? It seems like well everybody I know has insurance. So even though the list price is $300 are people really paying that and you come to find out and correct me if I'm wrong here. The system is so complicated that even if you have insurance, sometimes you are paying list price you're paying different prices is that something that you found as well
Lauren Stanford 15:34
was prices are really important because a there are people who are uninsured and be when you're on a high deductible plan, you're paying lowest prices until you meet your deductible. So if you have a $5,000 deductible, then you are paying those lowest prices until you hit that 5000 marks and you know how many bottles of insulin someone may need in the first month of the year. I mean, that could be pretty close to five thousand dollars and a lot of people don't have that
David Mitchell 16:02
out of pocket. So well and I would add that in some plans, insurance plans, even after you meet the deductible, you will have a co payment or coinsurance and frequently that's based on list price. That's certainly true in Medicare. You pay all of your out of pockets based on list price. So list price really matters. And I think it is somewhere in the range of 65% of people who pay for some or all of their medications through the year based on with price.
Stacey Simms 16:41
David, you mentioned earlier, some solutions. Some you said yet. I really liked that. When you said there's this is you know, there's not solutions yet. Can you talk a little bit about some of the things that Congress is considering and also you mentioned a couple of them but help people who are listening Try to make a difference. am I calling up my representative and saying vote on this? am I writing letters? What can we do?
David Mitchell 17:07
Well, you can come to patients for affordable drugs.org and share your story with us because we will see to it that the story gets put to work making the case for why this problem needs to be addressed. And then if you're if they're interested, we'll be in touch after they leave their story and not for money because we don't ask patients for money, but to let them know of times that they can call their right their member of Congress or state legislator to speak up for reforms. What are some of the reforms? There is a bill in Congress right now and it may be voted on in coming weeks, called HR three, which is a very comprehensive bill in the House of Representatives that allow Medicare to negotiate over drug prices, and was set as a cap a number that is no high Or than 120% of what six other wealthy nations paid for their drugs. This would lower prices in this country dramatically, because we pay two to three times what other countries pay for their drives. HR three has other good features would cap out of pockets for people on Medicare, it would include inflation caps, so their prices can't be raised more than inflation. year over year. There's a bill in the Senate that is bipartisan, being championed by Senators Grassley and why didn't that would have inflation caps, again, making sure that drug makers can't price gouge by capping increases year over year at the rate of inflation. And the Trump administration has thrown its support behind the senate bill and the Trump administration may be about to bring forward April causal only covering Part B drugs. Those are drugs administered by doctors and nurses in hospitals or doctors offices that would use reference pricing international reference pricing to literally lower the price of Part B drugs to small sliver of drugs. It's only a pilot program, but it's very significant that the administration has brought this idea forward. So there are a number of proposals that are floating around. There are a number of other dynamics in play right now. And I'm laughing It's not funny, but there is a lot of obviously political energy being sucked out of the room by the impeachment process and the partisanship that exists, but I can tell you for sure that if Democrats and Republicans Both in Congress and in the White House could get a deal on drug pricing, they would all really like it. Because there's so much anger and energy around this issue. They want to go home and campaign on having done something. So we are trying to leverage that political energy to see if we can get something done. Before we get too deep into the election year in 2021, it will become increasingly difficult. Yeah, that
Stacey Simms 20:25
makes a lot of sense. It really does. I'm curious, and I don't want to be devil's advocate here. But and I know there's a lot of hope. And there's a lot of energy, as you say, but I'm trying to think of a time where we actually made progress on medical pricing, and things like that. And I mean progress, where prices came down and access improved in the last generation or so. Not to say it can't happen now. But has it happened have we had success in any of these things?
David Mitchell 20:55
know we actually have the most expensive health care system in the world. Some people think we have the best health care system in the world. But we don't actually, we have the most expensive health care system in the world, other countries have found a way not only to pay less for their drugs, but to pay less for all of the elements of health care, and still have better health outcomes, longer life expectancy. We have a system that is built in many ways, not only the drug pricing system, but the whole system is in many ways built to benefit the people who make money on it more than benefit the people who is supposed to serve. So we have hope, and drug pricing because 90% of Americans say they want Congress to do something about it. Democrats, Republicans and independence, there is an enormous energy. It's the only reason that there's hope because pharmaceutical industry is probably spending about a billion dollars a year to fight anything that would lower drug prices. And the amount of money that our side has, is dwarfed by that billion dollars. But what they don't have and we do is a very angry electorate, demanding that the people who they send to Washington and state capitals do something. That's what gives us hope. And that's why having people speak out is so important.
Stacey Simms 22:27
Lauren, let me ask you, you have been at patients for affordable drugs for not not too long. A couple months now. Are you? Okay, are you more hopeful than when you walked in the door?
Lauren Stanford 22:38
Ah, definitely. I don't know if that's because of the political timing, but I can tell you what, these people if anyone's going to get it done. It's this group and our advocates. We have strong voices and to echo what David said before something that we have that pharma and the pharmaceuticals don't have are these compelling patient stories and I think we're doing a really good job of making sure they're heard on the hill and that something needs to change. And I'm definitely hopeful that something is on the horizon, there is not a more deserving cause I think then lowering drug prices so that people can afford to live. So I'm very hopeful.
Stacey Simms 23:19
Thank you both so much for spending some time with me. We will link up the full report, you know, as we have in the past and information, how people can get in touch and share their stories, but I really appreciate it and thanks for fighting the good fight.
David Mitchell 23:31
Thank you, Stacey very, very much. Thank
Unknown Speaker 23:33
you
Stacey Simms 23:34
information on everything they talked about at diabetes connections. com, click on the homepage to learn more about patients for affordable drugs, the legislation that they talked about a link up some insulin for all hashtag stuff as well some other resources that are out there. And of course, I will also link up to spare heroes that I talked about at the very beginning of the episode. I know Valentine's Day is just about here as this episode airs. It's tomorrow but it is Not too late. And of course, the sparrows initiative will continue for a few weeks after Valentine's Day as well. So please, if you can take part back next week with our longer interview episodes, those drop on Tuesday, and I'm going to be talking to the guys behind the new book that's coming out. They have a podcast to mastering diabetes. And I don't know if you've seen these guys, their claim to fame, their big trademark is they're like, eat 500 carbs of fruit. And I had to talk to them, because it could not possibly be that simple. Of course, it was not. But they really were fun to talk to. It was an interesting conversation. It didn't go quite the way I thought, because sometimes there's a lot of snake oil out there. This is not that they are the real deal. They are the real different deal. But it was great to talk to. That's on Tuesday. And then next Thursday, we will have another minisode and that will not be an interview episode as I just did. And that'll be back to just me talking about one topic for 10 years. 15 minutes. I love doing these. There's so much fun. I've learned a lot already in just the last couple of weeks and I hope you're enjoying them too. If you have a topic that you'd like me to talk about our question you'd like answered, please let me know Stacey at diabetes connections. com or you can just go ahead and post in the Facebook group. I have so many fun interviews lined up. I'm so excited for the weeks to come. But I always want to listen to you and deliver what you would like to hear. So if you got something, please please please let me know. All right, I am Stacey Simms. I will see you back here on Tuesday. Until then, be kind to yourself.
Unknown Speaker 25:42
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Stacey mentions a blog post Moira wrote back in 2013 about hybrid closed loops
In Tell Me Something Good, an amazing way to raise awareness. We’ll talk about the Run Across America – one man – from Disneyland to Disney World.. and its’ going on right now. More about Don Muchow from Diabetes Forecast Magazine (2019)
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This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Episode Transcript:
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21
This is diabetes connections with Stacey Simms.
Stacey Simms 0:27
This week, ask the D moms is back. We're talking about leaving kids home alone. Keeping perspective when you've been around this community a long time and driving. Moira’s daughter was behind the wheel before CGM, which had one advantage:
Moira McCarthy 0:42
The good thing about a blood glucose meter and a driving teenager was I had proof whether she had or had not checked her blood. You are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them I don't know how else
Stacey Simms 1:01
I have an idea.
You'll hear what my idea for kids with CGM is. It's something they can do before they buckle up in Tell me something good an amazing way to raise awareness. We'll talk about the run across America. One man going from Disneyland to Disney World. It's going on right now.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. Hello to new listeners from Maine. I spent this past weekend in South Portland, Maine, talking to the PPODS. I love that name. Parents and providers of diabetic children. It's got a little logo with peas in a pod. Very cute stuff. Now I'm taking a little bit of a chance saying I was in Maine this weekend because as you know, I do tape this podcast a couple of days in advance. And as I'm getting ready to go to Maine right now Actually, it looks like there's some snow in the forecast. So fingers crossed, that all goes well, and that my plane takes off on time, and that I wear the correct footwear. You know, I used to live in Syracuse, New York. I'm from New York, and I lived in upstate for 10 years. I had all sorts of boots and coats, but I moved to Charlotte 20 years ago. Most of that stuff is long gone. So I was really hoping for Sunny dry weather for main. But it looks like that is not to be so yes, I'll be posting on social media about how it goes. But assuming all as well, I make it there and back with no delays. Fingers crossed. I'm sure it'll be a great time. And of course as you're listening, it was a great time.
It's one of those funny things that I thought about a lot especially when my kids were younger about the differences raising kids in the south and in the north. My sister still lives in New York and her kids were growing up. She would send me the cutest pictures but they would in snow pants and snow shoes and jackets and scarves and gloves. And I was throwing my kids at the door, not necessarily with flip flops all year round, but pretty close to it. Benny, I don't think owns a pair of long pants. He basically wears shorts, even when we get a flurry or two here. But I also always thought about diabetes, and how much more difficult it must be to manage all the gear for kids, when they're all bundled up. You know, you do hear about static issues with some of the diabetes technology and other stuff like that. And I was just always really happy that I didn't have to mess with it too much living here in North Carolina.
All right, I'm going to be talking to my friend from the northeast. My friend Moira McCarthy, lives very far from me, but we'd love to get together virtually every once in a while. And I'll be talking to her in just a minute but first Diabetes Connections is brought to you by One Drop. And you know, I spoke to the people at One Drop, and I was really impressed about how much they just get diabetes. And it makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop, diabetes care delivered, learn more, go to diabetes, connections calm and click on the One Drop logo.
My guest this week is my dear friend and fellow D mom. Moira McCarthy, Moira is of course a renowned writer and author, a speaker and advocate, a professional travel writer and much, much more. Her daughter was diagnosed at the age of six more than 20 years ago. And in this go round, I get a little selfish with my questions. Yeah, I have a question for more. You know, Benny just got his permit to drive in early January. And I wanted Moira’s advice. So we talked about that. And we, you're going to hear us kind of puzzle out some things on the spot. We came up with a couple of ideas. And we didn't talk about this ahead of time, and I debated editing some of it out. But I think it's kind of fun to listen to the wheels turn. So you'll hear that and we also talked about when is it okay to leave your child home alone. And then we got on a bit of a soapbox about being blunt, because we're very blunt and the blowback that we both take for that. I will link up all of the stuff that we talked about here, including I mentioned a blog post that Moira wrote back in 2013. And you'll know it when you hear it and I will link it up at the episode homepage. So here is my chat with my fellow D mom. Moira McCarthy.
Hello Moira, it has been too long. How are you?
Moira McCarthy 5:45
I know the holidays went by 2020 started whereas the year going I am really good. I just got my hair did and while I was there, I was thinking all this is perfect because I'm staying and I are doing the podcast and then I remembered that they can't actually see you on the podcast. So people should just assume I've always had my hair dead right before it I
Stacey Simms 6:08
always look beautiful. It's so funny with the show because a lot of times when we do these interviews, you know, you can open up the video window, but half the time I'm in my pajamas, or you know, it's late
at night, and I don't want I don't even want to show myself to the person I'm talking to. Maybe one of these days we'll do a video podcast, but not today. So I've been dying to talk to you because right at the beginning of the year, Vinnie got his permit now in order to drive in North Carolina. I know in North Carolina. No, he's like four. Yeah, exactly. You can get your permit here at 15. And then you can get your driver's license. It's a graduated system, but you can get your driver's license at 16. So a lot of kids like my son at 14 and a half, you know, go to Driver's Ed, and then they take the the written portion, then they take the driving portion and then they're behind the wheel and that's where we are So I was so happy to talk to you because we're a few weeks into this now. But what do you think of driving and diabetes? I know it was a little different when when Lauren was driving, but can you share your experiences on that?
Moira McCarthy 7:12
I it wasn't that much different. The first thing I will tell you is Lauren is my second child, my older daughter is four and a half years older than her. And so we had experience teaching a child to drive before and I can honestly say that, I think that Lauren having diabetes made me take it all more seriously and do a better job than I had with her sister. So I think it's kind of a benefit. And one little example I can think of off the top of my head and then we can talk about details about kids with diabetes and driving and what they should do is um, I remember realizing that was really important to teach Lauren, my daughter with diabetes, how to pull over safely if you had to pull over suddenly for some reason for her it would be a low blood sugar or something right. And I realized that I don't think I ever taught my daughter that like, I think if you just say well pull over as soon as you're low, they're going to, they could pull over. And so place it, it's really dangerous to pull over, you know, instead of like go to the nearest exit or, you know, if you cannot make it there call 911 type of thing. And so that's just one example of many that I think that it caused me or led to me to do a much better job.
Stacey Simms 8:22
If you're listening and thinking, of course, they're gonna know how to pull over, get me just you've never driven with a new driver, because it's amazing what they don't know. You think they've been your car for all these years? They must pick up on everything. But I never taught Leah, my older child who's now 18 you know, I never taught her how to pull over safely. That's going to be lesson number one when she comes home next,
Moira McCarthy 8:41
because seriously, you can say most people must but how many times have you seen people pulled over like on the median strip side instead of the other side of the highway? You know, or or up next? What jersey barrier when you're like, No, no, don't get out of your car there. So as far as kids with diabetes, we were big problem. opponents have a contract for driving. And you sign the contract right at the point that he's at now, when they begin driving, and you sit down together and you discuss it, and there's actually a chapter in my book on driving and there is a sample contract. I'll tell you in a moment what I would add to that, because that was written five or six years ago, but you come to agreements together on what the expectations are, and then you both signed the contract. And for us, we did have low blood sugar amount that we expected her to pull over, if she got that low. And then we didn't really have one for high and we can talk about that if you want to. But our agreement was that if she forgot to check before she drove, she would have the keys taken away from her for a period of time. And sure enough, the first month, she had her license, she did it and I had to take her keys away for within that day, I had to drive her everywhere again. I say well, that's not a punishment if you drove them but it was a punishment. So with the Contract everything is out in the open and clear. And you as a parent have to stick to it and your child has to stick to it too.
Stacey Simms 10:06
So when I said things are different, all I really meant was CGM, which obviously not everybody has.
Moira McCarthy 10:13
Yes. So I will tell you what I would add to that contract and what I think about CGM and then we can talk about it more. I personally think it's super important that your children never ever, ever, ever look at their CGM while they're driving. Now, that doesn't mean they shouldn't use it. But just like a cell phone, it should be put away somewhere. And if they hear the sound, they should proceed to a place where it's safe to pull over and look at it pulled over. Because you know, and I know, it only takes two links of an eye if that for a kid to look down at something else, and look up and end up in a bad situation in a car.
Stacey Simms 10:52
Yeah, that's a great point. I was just thinking of checking the CGM when you start the car and I think a lot of people would be okay with their kid glancing at it rather than doing the finger stick. That's a personal thing I think that parents have to decide. But what's interesting is so Benny has an app from, I guess it's from the DMV, it's probably not, it's probably from a third service that the NC the North Carolina DMV is working with. But it's an app on his phone to keep track of his hours of driving. So instead of filling out the piece of paper that my daughter did just a couple of years ago, when he gets behind the wheel, he first opens the driving app and clicks on or whatever the heck he does. And then he opens the CGM app, and looks at that as well. Yeah, so I'm really happy because he's getting in the habit of just checking something, right. He's got to pull out that driving up every single time. So we're making him look at the CGM, too, but it never occurred to me to tell him don't look at it while you drive. I mean, obviously, his phone has to be away and that sort of thing. But I can see where he would think, well, this is a safe thing to do. I'm trying to figure out what my blood sugar is.
Moira McCarthy 11:52
Yeah. Every time I mentioned it to a parent, they're like, but but it's safe because it's their blood sugar. I'm like no. You cannot let a teen or any driver for that matter. Look down at a screen when they're driving even if you feel like they're just glancing. It's in my opinion, the most important thing and driving and CGM is that.
Stacey Simms 12:13
Yeah. And just a little bit of a heads up for people who may not know. And I'm going to say this, but I'm going to give a warning, my own warning at the end. You can now if you use a dex calm, and maybe there's other CGM that will do this. You can now say, hey, Siri, or Hey, Google, what's my blood sugar, you can actually do that in your phone. However, I still be really careful about that while you're driving. I don't think a lot of teams are driving for hours and hours and need to constantly assess their blood sugar. So that's my warning is even with that. I would still not want my child constantly checking blood sugar. So I just don't think it's safe and it didn't occur to me until you brought that up more.
Moira McCarthy 12:48
The interesting challenge for you parents, such as yourself, putting Benny on the road is the good thing about a blood glucose meter and a driving teenager was I had Proof whether she had or had not checked her blood, you are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them. I don't know how else
Stacey Simms 13:13
I have an idea. contract you get behind the wheel, you take a picture your blood sugar, you don't need to send it to me at that moment.
Moira McCarthy 13:21
That's a really good idea. But I wouldn't make them I send it to you because I'm not sure that I would sit home. Let's talk about this because I don't know the answer. Will you sit home and watch his blood sugar's on his CGM when he's out driving around in the car? Huh? Well, I don't know. I think I would say no, but
Stacey Simms 13:44
Well, I'm gonna say I'm going to be honest. I'm going to say I will glance at them, but I will rely on the alarms. So I think and he and I will talk about this as it's funny to think about this as we're recording, but I think what we'll do is if he hits a certain number, then you can expect a phone call For me, not a text, you know, but maybe a phone call, but I don't think that number is going to, it's going to have to be low, you know, and just to check in on him, but I also don't want to distract him. So yeah,
Moira McCarthy 14:12
this is a good question.
Stacey Simms 14:14
But all the phone calls now we're you know, we're hands off. So but there's but it's also not legal in every stage talk on the phone when you're driving. Oh my gosh, what a thing we've gotten ourselves into.
Right back to us try figure it all out. But first Diabetes Connections is brought to you by Real Good Foods. I love this stuff. They're so easy. They're so convenient, and they're good and they're good for you. One of the fun things about going to the Real Good Foods website is not only can you see all of the products, I mean, I usually buy it in our grocery store. It's really nice to just have it in the freezer there but all of the products are online, and then you can go into recipes. And if you've heard me talk about this before you might be thinking recipes isn't the stuff pretty much ready made. It is But then they have all this fun stuff you can do with it, and different ways to prepare it and mix and match a stuffed chicken power bowl. Spicy Italian sausage lasagna. I'm not sure what this is about pizza fries and ice cream. Okay, you're gonna have to go check it out and see the recipe for yourself. They have a lot of great offers, and you'll find out what makes them so good, but you really don't know until you try them. Find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now back to me and Moira and we're working out this driving and CGM thing in real time.
Moira McCarthy 15:43
No, I think this is really good. I think we can think this through. I think that what I would do is, like you said set a parameter but also if I see it, give it a little bit of time. Like I wouldn't assume the minute I see it, that he's driving and not Although I don't know, I think the best thing I know everybody's doing it a different way now, but I think the best thing might be not to watch them from home because they need to learn how to manage their blood sugars in the car on their own.
Stacey Simms 16:15
Yeah, I think I'm still gonna have him take a picture every time I begin.
Unknown Speaker 16:20
Yeah.
Unknown Speaker 16:23
You just have to send it to me.
Unknown Speaker 16:24
Right? And then every once while like I would
Stacey Simms 16:27
do, you could say I'm
Moira McCarthy 16:29
just gonna take a look at that. Just show me and then you see. And also even if you never say that, he knows that you have the ability to ask him. That's the secret. I think that's a very good idea, Stacy.
Stacey Simms 16:40
Why thank you. It's you win. Please trust but verify. I'm gonna talk to Benny. Maybe we'll follow up on this a little bit more and kind of see how it goes. But when I didn't I meant to ask you earlier when you took Lauren's keys away. I'm curious because she's such a shy and retiring type of person. How did that I mean, obviously she learned from it. It was important but she she was probably pretty upset.
Moira McCarthy 17:01
She was upset, but not at me because we had that contract. And so it wasn't like I was saying, Oh, you did this and now this is your punishment. She made a decision to do something, knowing what the outcome would be. And so she was mad at herself.
Stacey Simms 17:19
Hmm. Right. I got to get a contract ASAP. Yeah, you work? Yeah, it does work. We did it for social media. I do and it definitely works. Okay,
Moira McCarthy 17:27
great. parents with kids without diabetes or learning to drive need one that like I said, I learned so much from my second kid with diabetes driving that I should have done with my first one. So,
Stacey Simms 17:37
alright, so on to the next question, which was not for me. And thank you for answering my question and letting us hash this out a little bit. So I was at an event in South Carolina recently, and it was so cute. There was a mom with a daughter who was diagnosed about a year ago, the little girl was seven. And at this event I mentioned Okay, my husband's out of town. I'm an hour and a half away from home. I was in Columbia, South Carolina. Ben, he was home alone, Benny was not only home alone, he had gotten himself a ride home from wrestling practice, he had made dinner I don't even I'd left him some food, but I really don't know what he ate. And I was not going to be home until about 10 o'clock at night. And I shared that with the audience because I had my cell phone out, just like you do with any kid just in case diabetes or not, you know, thing if your parents was the closest, and they needed to be around, and so I could make a joke about I don't know what he's eating for dinner and that kind of stuff. We didn't talk about it very much. But at the end, that parent and little girl came up to me and the little girl was like mom asked her a mom asked me Well, how old do you think kids should be when they can stay home alone with diabetes? And the little girl is so cute because she's like,
Unknown Speaker 18:40
I told you I told you I'll be old enough.
Stacey Simms 18:46
So this is a good topic because as usual, it doesn't just happen. You know, you plan for things and I should say, because I was an hour and a half away and I did this with my older child to my neighbors are great and I have friends you know? 10 minutes. away, I had two people that were on, as I like to call it, they're on hot standby, not necessarily for diabetes, but like if you can't get a ride home from wrestling, or if I don't know, lightning strikes the house, you know, whatever. Right? So what what are your thoughts on leaving kids home alone with diabetes?
Moira McCarthy 19:17
So I know that I sound like a broken record. But ask yourself what you would do without diabetes on board? And that should be your answer. I honestly did not see. And Lauren was my second child. So I did have a child that I had to make those decisions with before. I didn't see any reason that diabetes would make the answer any different. Now, the answer is super complicated, because in some states the legal question and in some states, it's not and then some situations parents are in desperate situations where they're going against something they may want to do. And so it's a complicated thing. So the way it worked for me in our town, you can take the babysitter training course when you're 11 and a half. And so that's when kids in our town between 11, a half and 12, that's when they kind of start babysitting a little. And so I backed it off from that by about a year to a year and a half. And that's when I would start like leaving them for short periods of time. Or if we were just going to a movie that was 10 minutes away. And as you said, always with you know, Mrs. Jones is home across the road, if you can't get me type of thing. And so I don't really see any reason, and maybe you can tell me what the reasons are. Why that answer would be different with a child with diabetes. And I say that I raised a child with diabetes, I fully understand all the responsibilities they have, but they should become just sort of a part of what they do and how they live and how they do all the other things that Everybody else does when they do it. What do you think? Am I wrong?
Stacey Simms 21:04
Yeah, unfortunately, I'm, I'm going to agree with you. We're going to be nice and boring here. And I did pretty much the same thing. Yeah. I quit. But I can play devil's advocate in a moment. So we did the same thing in fifth grade. And I think that's when they're 10 or 10, or 11. But it was fifth grade, specifically, that I started leaving my kids home alone. Leah was the older child. And then same thing with Benny, and it was a quick trip here or going there. The diabetes definitely made me more nervous. I would have to write it right. I think it's important to say when we're saying this, you know, it's not. I know, you're not just cavalierly, although Lauren could probably run the town by herself at age 10. You know, you weren't just cavalierly, oh, it's fine. It's fine. You have to do a little bit more. But I do think the fear is, especially with CGM, which helps but also shows you everything. The fear is the kids going to be reading a book in the chair and then just fall over people are concerned That their kids gonna play a video game and forget to look at their CGM or check their blood sugar. And they're going to collapse. I mean, let's call it what it is. People are terrified to leave their children alone because they're afraid of the worst possible scenario. I mean,
Moira McCarthy 22:12
what kind of video game?
Stacey Simms 22:17
But you know what's really funny is a lot of times, this is a real thing. Kids get so distracted. And I have one of these, they get so distracted with some of these high intensive video games, that they don't release their blood sugar's low until they stop playing, or that their blood sugar's really high. Now, it's fine, because they stopped playing and say, Oh, I really low and then they treat, right? Or they stopped playing say, Oh, I'm really high and they take some insulin. So it's not that big a deal. But I think once you see that happen, you're thinking, well, what if I wasn't home? And the answer is, if you weren't home, the kid would treat the blood sugar, right?
Moira McCarthy 22:49
And that goes to the perception that many have that if their kids blood sugar's low, and they bring them something or something that they're quote unquote, saving their lives. Yeah, and I think that they really believe that but what I always say it's kind of like saving a life sort of the same way, if someone's really hungry, you feed them. You know, I mean, I don't know of any cases of kids just falling off their couch and dying from diabetes. I know that cars hit houses randomly while a kid sitting on a couch or lightning strikes the roof or a tornado comes. In other words, people die. I just don't feel like there's that kind of urgency. Now. That's an educated child who knows how to take care of themselves. I'm not talking about a child with special needs more, or one who's newly diagnosed and has absolutely no idea or the rare rare case of the true hypoglycemic kind of where person which is a whole different ballgame and frankly, doesn't really exist in children. So it's sort of not in this conversation. But I think that if people could understand that those arrows are not even though You can make it have a siren sound, it's not really
Unknown Speaker 24:02
an ambulance situation,
Moira McCarthy 24:05
that might make it easier to do. And of course, all children are different and all children are unique. And there may indeed be a 16 year old boy who still needs a babysitter for different reasons. But just speaking in generalities, if your child has been educated about their diabetes, and they're within the age that you would leave them alone, it's more about you than about them, leaving them alone, I think.
Stacey Simms 24:28
Yeah, I agree. I agree. You're not you know, you have to decide. And I saw this at another event I went to we were talking about sleep overs, you really have to decide that your child is not on death's door when they're diagnosed with Type One Diabetes. And I know you and I both get a lot of flack. A lot of people who will not say this publicly, but will dm us and email us and tell us that we're wrong, but we're not. You have to decide that your child is not on death's door with type one, or you won't live life and this is one of those tiny little things that you may not be thinking it as you listen, but if you're reluctant to leave your 13 year old home loan? And the answer is because you're afraid they're going to go low while you're not home and collapse and die, then I don't know anybody else more who speaks this bluntly. And it drives me a little crazy. I think when we speak so bluntly, it's a little scary. But it's also honest. And it's important, because when you have this kind of fear, you have to name it. And you have to talk to your endocrinologist about it. If you have this kind of fear, you know, and just find out about it.
Moira McCarthy 25:22
It's really interesting you say this, because I've thought a lot about this in the past 24 hours because of something that was written and perhaps you can link this to this podcast this month, which is rensis new article. Yeah, about how she almost walked away from it all. And I will be honest with you, and I think this might be important to talk about in in that I know there are people out there because I'm listened to widely and read widely, who think I am just the most fun feeling uncaring person in the world because I say to them, you could move past your fear and you could do it for the sake of your child and you don't need to have this fear and they therefore Fear is so part of them, which I get that they take it as a personal affront. And I had been thinking, you know, maybe it's time for me to stop saying it. Maybe it's a different world and thank god my daughter grew up before everybody was as afraid as they are now. We were all afraid we're humans, but then I read rensis thing and I was like, no, it's okay to be blunt. Sometimes, you know, it's that old song cruel to be kind in the right measure. You're doing it for the best reasons. And and when I see parents who are so scared and so paralyzed and passing it on to their children, if they think it or not, or not passing it to the children, just their affiliate that way, it breaks my heart because I know in 95% of the cases, that doesn't have to be the case, right? Yes, yes.
Unknown Speaker 26:43
Yes. Well, I know she was saying
Stacey Simms 26:48
it is it's very difficult, but I'm glad you're sticking around. And you know, it's funny, you mentioned you are widely read, and it brought to mind this year, in the last couple of weeks. Of course, we've all seen the big excitement over control IQ with the tandem insulin pump. as Laura and I are speaking this is at the very beginning of this. So I don't have anything to say yet about our usage of it. By the time it airs, I'll probably have a lot to say. But every time I think of closed loop and this is a hybrid closed loop, I understand but every time I think of artificial pancreas more I don't even know if I've ever told you this. I remember where I was when your column came out. And I read it called something like I held hope in my hand
Moira McCarthy 27:26
is held in my hand. So it was about Anna Floreen. Oh, yes, yes.
Stacey Simms 27:30
I was at the Honda dealership in Ft Mill, North Carolina, waiting for my van to be serviced. And I was crying.
Moira McCarthy 27:41
And it was believable. That was the first time that anything that treated diabetes that way existed outside of a hospital setting. Yeah, that day and I met her for lunch. She had to stay within three miles of the hospital, but she could go out So we met for lunch. And it was the first time I had watched Anna, not have to weigh what she was eating that way with the scale. But you know what I mean? Right, right. It just blew my mind. So Wow, that's a good memory for me. I got kind of choked up when you brought it up.
Stacey Simms 28:15
Oh, absolutely. And of course, this isn't exactly that. It's not the I don't remember what software was being tested. And you still have to count carbs and do that with this with control IQ. But I think of you. And if you're not familiar, Moira and I are friends now. But I was just a fan back then reading all of her blogs and books and everything. And so I wanted to ask you, because then I don't know what year that was. But you know, you've been in this world for a long time. You know, born was diagnosed 22 years ago,
Moira McCarthy 28:43
almost 23
Stacey Simms 28:45
years. 23 years ago. Two and a half. Yeah. All right. So I don't know if you can answer this question. You know, we've been into for 13. And I feel like sometimes, as you mentioned, you're thinking, well, maybe I should stop talking about it. You know, how do you how do you kind of keep on going, going going because I've I really hope you continue to do so. It's a very selfish question.
Moira McCarthy 29:05
It's a good question. And I remember a million years ago, I, I'm going to say was 1999 or 2000. So I had been in the diabetes sphere for Lauren was diagnosed in 97. And I went to my first jdrf International Conference they used to have, and there were all these people who were doing so much and were so smart and knew about all the research. And I got up and I asked the question, they were also hopeful. And I asked the question, is your hope real? I want someone who's been in this for a long time to answer is this hope real? Because I don't want to hang out find out in 15 years, like this is all just some stupid cult, you know? And this woman named rd Johnson got up, and she's very well known in the diabetes community look her up but um, she said, I think it had been like 15 years since her son have been diagnosed at that point. And I remember thinking, wow, and she's still involved. Team. I know I'm going on. I mean, I waited a year till I got involved. So it's been 21 going on 22 years. So, but I think it's a really good question. And I'm going to say that it's not easy. But I have a couple reasons to keep pushing. And most of my friends who were super involved, sort of start dropping away about 10 years ago, there are not that many of us who have been constantly involved for two, three decades. Yeah. But the first thing is that I really did make a promise to my daughter when she was diagnosed that I would try until there was a cure. And I think she would totally understand if I said right now I'm over it. I did the best I couldn't image for but that's as far as I can go. But I, I want to appreciate and respect that promise. So that's the first thing and I'm very thankful for the jdrf ride to cure because that makes it more palatable at my point to be involved. I would feel weird doing a walk to Now you know what I mean? I do and I do like riding my bike. And I like the people who are there. And I'm thankful to all the people who donate I mean, I just registered to ride like two days ago, I think I have almost $5,000 and people are so good. And then the second thing is, I have to find some positivity out of all this for me, I have the positivity for my daughter's easy. All I have to do is look at her and see her career, her life, her happiness, it's all good. But I have to get something out of this for me because raising a child with diabetes is is a lot. And I think for me what it is, is if I can share my mistakes and what I learned from it with people now and if they can believe me, then maybe I can make it easier for someone else and that makes it worth while what I went through. Does that make sense? Does that sound hokey and stupid? Oh, it
Stacey Simms 31:54
sounds wonderful and genuine. Yeah, it really does.
Moira McCarthy 31:58
It gets harder and harder. Because I know that I'm people think I'm a dinosaur, but what I understand is, I'm kind of a dinosaur, but I'm a dinosaur that's evolved. Like, I understand technology and respected and I know what's going on. Do you know what I mean? It isn't like I'm stuck back in barefoot and that was fine.
Stacey Simms 32:20
I know the trick that I know you're trying to pull here is using technology to the best of its ability to help us and not hold us back.
Moira McCarthy 32:29
million percent. Yeah, we know it's so happy. So happy.
Stacey Simms 32:33
Yeah, it's and another thing that you said that I just want to bring out if you know as you listen, a lot of newer people we mentioned control IQ. And you mentioned jdrf Moira, and I think this is just another reason to stay in the game. You may not realize as you listen, that control IQ way back in the day was called tape zero technology and type zero technology came out of University of Virginia. Maybe you know that if you listen to this podcast, but you may not know That the first funder of type zero technology was jdrf. And without the biking that you do more and the walks that so many other people do, and the fundraising that goes on, you know, the control IQ and other closed loops, hybrid closed loops, I need to be careful. You know, it's not going to happen. And I know a lot of times like, because I see the comments, people don't know that jdrf does these kinds of things. They just kind of think it springs up. But I wanted to tie all that together. As you mentioned it since we already talked about it this episode, and it's just really important to me to have that link. If that makes sense. I feel like I'm helping
Moira McCarthy 33:38
even further back from that type zero, when the very first continuous glucose monitors came on the market. No one was buying them. They weren't getting any attention. Zero insurance companies were covering it. And so at showed her up and I was one of the lead people on this. I chaired advocacy nationally and stuff like that at the time, but a whole team of us The first thing jdrf did was no company wanted to fund studies. The NIH didn't want to fund studies. No one cared about CGM. So jayda funded studies in six centers across the country, on children and adults in CGM. And those were the very first studies that showed that they would make any difference. And that's when companies started saying, Hmm, maybe we might want to invest in this product. So then companies invest in the product. And what we did is we physically and I was one of these volunteers found people in large insurance companies, because no one was covering them, and filled out their paperwork with the mic by hand, got them covered in all the big companies. So then we could say, well, there's a precedent for you, someone's been covered in your company. And that's how they got covered. So that's all I just thought that was an interesting little It
Stacey Simms 34:48
is alright, we'll have to talk to jdrf. We're going to do the Time Machine thing where we go back and talk about CGM and the artificial pancreas project and all that kind of good stuff. A great idea. Yeah. But more thank you so much for popping on and sharing some of your wisdom. We're not doing this every month like we were last year, but we'll do it here and there.
Moira McCarthy 35:07
Yeah. Thanks for having me. It's always good to catch up.
Stacey Simms 35:09
All right, and I'll be consulting your book for Benny's driving contract as soon as we
Moira McCarthy 35:14
add the CGM thing. Don't forget no looking at your CGM. I love
Stacey Simms 35:18
Unknown Speaker 35:25
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 35:31
I'll link up all the information on things we talked about at the episode homepage at diabetes connections.com. And wherever you listen to the show, a lot of people listen through social media or on apps. That episode homepage has all of the information. And starting this year, every episode has a transcription as well. So go ahead and please check that out. Isn't it funny though, how I remember that blog post and exactly where I was when I read it. It's just funny how things stick with you and I can't believe it was more than seven years ago. Now. Oh my goodness.
All right, I will have Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a really long time, I thought it was something just our endo used, but you can use it on both the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I have been checking it about once a week, I'll be honest with you, since we switched over to the control IQ software, I am checking it more often. Just because this is new, and I want to see the trends, but it really does help us dial back and see the trends and not overreact to just what happened one day or one hour. Those overlay reports help the context of these glucose levels and patterns and you can share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the best CGM systems working for us. Find out more at diabetes connections calm and click on the Dexcom logo.
A couple of days ago, Don Muchow took off running, and he is not gonna stop for quite some time. Don is running across America took off on February 1, and he is estimated to reach the finish line on May 8, he is heading east started in Newport Beach, California. And the plan is to run 2830 miles in less than 100 days. The goal here is to make the fastest to Wendy crossing to date because other people have done this. But he also hopes to compete the first ever solo run by anybody from Disneyland to Disney World. I will link up all about Don because this is obviously not his first time doing something like this, although I think this is the longest one, but man, it's wild and he's got the whole route. You can support him. You can can track him, you can join him. He is doing this with the support of many people and not least of which is coming from his wife who's driving the support van. And one of the things that stuck out to me as I was reading about Don, is that he didn't do his first five K, until he was 43 years old. He was diagnosed at the age of 12, in 1972. And at the time, they really thought it was just too dangerous. You know, there was no easy way to check blood sugar in those days. So they said, you know, skip gym class, don't do a lot of physical activity. And he says he followed those instructions for a long time. But when he was 44 years old, he needed treatment for diabetic retinopathy. And then he decided, look, it's only going to get worse if I don't make some changes. And that's when he decided to start running. Well actually started walking.
And this is a great article from diabetes forecast magazine. I'll link this up, and you could read the whole thing. But he didn't start out with an iron man. He and his wife decided to start eating less and then they started walking. He said it was boring at first, but then it got more fun, bigger accomplishments. And then he ran his first five K. And he went on from there. He eventually founded a chapter of the diabetes and exercise Alliance, which is a community of people who are really active with diabetes. And really active seems like an understatement when you're talking about crossing the country, just on your own power. There are two people with type one who have done this before we actually spoke to one of them. We talked to Noah Barnes and his dad, Noah walked in 2017 spent the whole year basically, and is holds the record for the youngest person to cross the US on foot. So I'll try to catch up with Don as he is on this journey or shortly after, but again, I'll link up all of the information because the route is there, how to support him, his there and all the dates and everything else. So I urge you to follow along and they're also posting all this stuff on Facebook to T one determined all one word, Type One Diabetes run across America. The page and he's reporting you know everything blood sugar's food, sleep, whatever you want to know. This is great. We're all behind you done. Good luck. Tell me something good.
Quick little update on Benny. Many of you have been following his injury this year he started out on the high school wrestling team. And the got pretty badly injured in October needed knee surgery. It wasn't really wrestling, it was just bad luck. So he is doing much better now. He's been off the crutches since the beginning of January, hallelujah. He's feeling great. He is dying to get cleared or ready to wrestle, but it looks like he's not going to make it by the end of the season, which is really the end of this month. But you know, it's hard to have perspective when you're only 15 but the doctor is really looking at this as a long term issue and doesn't want him to have any problems when he's 30. I think Benny would trade that right now given the choice to wrestle a couple a match. But of course, we're gonna kind of let him and luckily his coaches gonna let him either. I'll keep you posted as that goes because we were really in interested to see how he would do with diabetes. We got the blood sugar stuff kind of under control at the beginning of the season after some serious lows and some big problems with I mean, he had one practice I told you where he 75 uncovered carbs, holy cow. It's such intense physical activity. But we're more concerned and curious now about keeping gear on. Because when he actually wrestles, which he hasn't done yet, he's done it in practice. But you know what I mean, we had to figure out where to put the Dexcom the pump, he wears a tend to pump, he can just clip that off for the match. But the Dexcom is gonna be really interesting. So I'm talking to some people who are in the wrestling community. And we're going to figure this out because he will be back on the mat soon, even though the season's over the club season apparently will continue and he really wants to participate in them. So I hope it continues. It will be fun to see and I hope we can experiment with different places to put the decks and see what goes on with that.
My next trip is in March 1 weekend in March. I will be in Wilmington, North Carolina. Really excited to go to their first JDRF summit there. It's gonna be a little cool to hit the beach but Wellington's always a fun place to go hang out. thank you as always to my editor john kennis from audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday for our minisode
Unknown Speaker 42:20
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this?
Check out Stacey's new book: The World's Worst Diabetes Mom!
Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind.
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Episode Transcription
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes. Available as a paperback eBook and audiobook. Learn more at Amazon or diabetes dash connections.com.
Announcer 0:15
This is diabetes connections with Stacey Sims.
Stacey Simms 0:26
Welcome to another week of the show. I am so glad to have you here! This is one of our minisodes the shorter episodes that have become sort of the editorial page. If you look at the podcast as a newscast, as I often do. That's my background. I'm a broadcaster local radio and television for many, many years before I started the podcast. So the Tuesday episodes which runs longer and usually have an interview with a newsmaker. That's the news. And then these episodes have kind of become the editorial. And this week, instead of the headline stop doing this or think about before you do that, which I've been Doing a lot lately. I'm going to talk about why I think what I'm doing is wrong. And maybe you could help me with that. I know I'm not alone. But I'm going to tell you straight up here. I don't really have the answer for what I'm going to talk about today. And this is really about parents. But I'm hoping that if you're an adult with type one, you will listen to this as well. Maybe it'll sound familiar to you, maybe your experience can help us.
So this is all about my struggle, to, in a nutshell, stop thinking about it as my diabetes. It's not I know this in my brain. My son has type one diabetes, he was diagnosed right before he was two. We have been living with this for 13 years. And sure, my family is affected by diabetes. My family has to deal with diabetes, but my son HAS diabetes. And I'm kind of exaggerating, but you'll get a better idea in a minute why I'm saying it in such strong terms, because I know this is not helpful. So I'm going to tell you a story. This story happened in December, a couple of weeks before we got control IQ, the new hybrid closed loop system from Tandem. It does tie in, I'm going to tell you about our experience with control IQ, and then how it relates to all of this.
If you've seen me talk or you read the book, you know that I'm really fighting against this pressure for perfection. And I think and it makes me laugh that a lot of people like I was just in Raleigh this past weekend talking to parents about this. A lot of people think that I now have this down pat that I know, that I that I am perfect at not being perfect. And I think what's really funny is, it never ends, right. There's no finish line to parenting, where you're like, Whoa, great job. I'm, I'm all set. right good for me. I did it. I mean, there are big milestones, like college and when your kid moves out permanently, but I really don't think that there's a point at which we can say, that's it. So we're all trying to improve. And I think this story will highlight really just What a dingaling I can be sometimes, because this stuff isn't easy, right? And we're always trying to improve. So let me tell you the story, and then you tell me how to improve.
Alright, so this happened, as I said, in early December, so almost two months ago now, Benny was right in range before bed. He was hovering right around 125. And for the last few weeks before this, he'd been dropping about 15 to 20 points overnight. That was it. Right? Just a little drop and then steady. So that was a fine number to just leave alone. But he texted me because this is how we communicate in my house, even if we're in different rooms. Right across the hall. He texted me a few minutes before I was gonna go in and turn out his light. And he texted me I feel really low. In my head looking at the dexcom I said, You're not low. You're 125 I don't want to treat that. You're going to mess up our great trend. And you're just going to go high. You're going to mess up our great numbers. I didn't say that out loud.
I went into his room and this is what I said. I said, “Really? Because Dexcom says 125. You feel low?” And he said, “I feel like I'm dropping. See now I'm 117.”
Even without the Dexcom number moving down a smidge. I knew my hesitation was selfish and misguided. Alright, it was dumb. He's not foolproof, but Benny knows his body. He has been living with diabetes for 13 years. And he felt low. And in my head, I'm like, “Stacey, come on. These are his numbers.” Did you hear me earlier when I said, you're gonna mess up our great numbers? I mean, I, it hurts me to admit that. But it's his number. It's not mine. It's not ours. So I said, “Okay, I trust you. Let me grab you a drink. Do you think you need more than that?” “Nope, just a juice box should be fine.”
Benny sleeps with an apple juice bottle by his bed. But it's it's a full like 25 or 30 carbs and he didn't need that much. So I grabbed Little can of pineapple juice, and I poured about 12 to 15 carbs, like a juice box, basically, over ice in a highball glass, because sometimes it's just gotta be fun. And in my head, I was kind of feeling guilty, even though I hadn't shared with him. I'm trying to make up for that by the splashy cocktail. So he loved that. And he drank the juice and he went right to bed. Now, I assumed I was going to hear that Dexcom high alarm pretty soon. I mean, I went to bed, but I just figured out right, I guess I just gave him 15 carbs he didn't need but instead, I woke up at 5:50am like I do every day. It showed that he had stayed between 100 and 130 all night long. He had been feeling low, he did need that juice.
While I am thankful that I didn't go into his room and say, “don't mess up our numbers” I didn't say what I was thinking out loud. It bothers me that I thought it at all. I mean, after all this time I do trust Benny with diabetes. I do respect his decisions. And I know that even though he is from perfect, right? He really is safe and happy. So why do I still have those thoughts at all? It's not about the good health outcomes. I mean, that's the first thing we think of as parents, right? We want our kids to be happy and healthy. And I would be lying if I said, Well, it was out of health concern. It was because I wanted to make sure that he felt good, and could sleep well and have a great day at school the next day. That's what I'm supposed to say. But it was about the straight-line graph. It was about wanting, I don't post them, but it was about wanting to not mess up the pattern we were on. I mean, what, would I really rather my son feel crummy and ignore what he has to say to me, showing him I don't trust him. I don't respect him to see that kind of graph. Ah, so how do we get past that?
Not only am I not answering that right now, I'm going to tell you another example of how it's now getting worse. And this is because of control IQ. First, let me say I love this system. tandem is not a sponsor of the podcast. They're not telling me what to say. Not that they ever did. But man, this is an incredible piece of software for us. I am so excited. We've had it as I'm taping the podcast, we've had it for about 10-11 days now. And in the last seven days, Benny's blood sugar has been in range 70% of the time at minimum, I think only for two days. For the most part, he's been in range with less work a lot less work. I don't think in the last seven days he has bolused for a correction, it's only been for food. Now the first couple of days we did have to do a lot of adjusting. And this is very typical. If you are on any kind of hybrid closed loop system and this is includes the DIY systems is my understanding the people I've talked to, you realize right away that most of your pump settings that have worked pretty well for you all this time are wrong. It's just that we are manually compensating for defaults. We're paying attention like we're supposed to, we're checking that Dexcom, we're poking the fingers a million times a day, right? We're really manually using the pump to get the most out of it. And not letting it run on its own. Because it's dumb, right? It's not a smart pump. Most of these pumps, most of the programs that we've had until recently, they're just a dumb brick that gives you insulin when you tell it to.
And when you switch over to the automated systems, you really have to trust and you really have to adjust. Because not only is the insulin duration all for most of us, but your basals are off, your sensitivity factors. I mean, I'm not going to go into too much detail here of all of the changes we had to make. But you do have to take your time with this. In fact, as I'm telling you this, we are still at the very beginning of making the changes here, even with those great outcomes we're seeing. I haven't changed anything in about five days. I've talked to Benny's endo, and we're going to wait another week probably just to kind of let it play out and see what really needs to adjust cuz it gets harder, right? The more in range you are, the less you want to tweak, but I know we can make it even better. But in a nutshell, we had some incredible lows like sustained under 50 lows that we hadn't seen and of course we overtreated for those. And then we had the perfect storm over a weekend of a birthday party that was an overnight party, huge dinner that he completely forgot to bolus for and then tried to make up for half an hour later at a bent canula. So that was high, high, high high for hours and hours and hours, which you know, of course, messed up my control IQ graph. And I am not kidding. Yeah, I know he was high. I know that he said he felt fine, but you know, he didn't feel great. I know that while Yes, his health is my number one concern in my little brain. I'm thinking, well, I want to show our control IQ graph and how great it looks. And I want to be like all those other people I'm seeing with their great results right away and isn't this supposed to be amazing and I want better results. And that's what I was mad about.
You know, I feel like a dummy admitting to this. But I know I'm not alone, because I am seeing a lot of my mom friends. And a lot of people I don't know, on Facebook, who are not necessarily saying it as plainly as I am, but who are definitely struggling. And sure we're struggling with the actual numbers. But I think we're also struggling with the expectations and we're struggling with our kids are old enough to do a lot of this themselves. So we're struggling now. With How do I and I'm doing this to Benny? How do I not helicopter, right? How do I not say to him five or six or seven times a day? Did you bolus? What did you do? What's going on? What do you think? How about this? Did you check? I mean, we don't talk about diabetes all that much in a day to day basis. But with control IQ and wanting to know what's going on with it, and wanting to be able to tweak it and make the adjustments. You have to talk about it. And we're out of practice. So I said to Benny, a couple of days in Look, you're just going to have to be patient with me, you understand why? If I'm driving you crazy, you have to tell me. And if you just want to give me the pump and walk away, so I can see what you did, that's fine too. But we have to find a way that I can see what's going on without driving you bananas, and that you can feel good that I'm still trusting you, I still respect you, I still think that your decisions about your body are ultimately the most important. But I need to help you with control IQ. Because at 15, and everybody may be different. But my kid is not old enough to really go through this and troubleshoot. And he's not interested. I mean, he didn't even really want to watch the training. He wants me to tell him about it. And that's fine for us, because we've talked about it now and I feel a little bit better about it.
But and I'll share another embarrassing thing. I just said that, you know, the last seven days, boy, he's been in range to 80% of the time. Well, today he's kind of struggling as I'm recording this. I'm not exactly sure what's going on. But he got to school and he went over 200 He probably ate some thing, right? I mean, it's not it. You don't have to be a genius to figure this out. And then he went back down. And in my head, I'm like, should I text him? No. Should I find out? What's going? No, you should leave them alone, Stacey, which I did. But I'm also thinking, Oh, I really hope that we're in range. But in my head, I'm thinking, Oh, I really hope we're in range more, because I don't want that 80%. It's messed up. I mean, come on. Oh, this stuff is not easy. I think acknowledging that It's troublesome to think this way, is important. I think acknowledging that I'm still going to think this way, is important. I'm trying to work it through and change it. Thank you for being my therapy on the show this week. Maybe I'm yours as well. If you have similar thoughts. I'm not really sure how to get past it, other than to acknowledge it and talk it out and laugh at it a little bit. Do you have a better idea? Do you have a way that all of us who are thinking about these lines And graphs as ours, and I'm not talking about younger kids, it's so different when your kid is two, or four or seven, or even nine. But once they're in middle school, you know, this transition, to independence, their own care for them to think about it, to take ownership of it, to know that you trust and respect to them. Even if you're questioning, I trust and respect my husband doesn't mean I don't ask him questions, right? It's a difficult transition. But it's such an important one, because soon enough, he's going to be in college and independent, and he's going to be out on his own independent, if I'm lucky. So I do think it's worth discussing, even if it's a little embarrassing.
And I was at a JDRF conference this past week that I mentioned in Raleigh, and I brought this up, I was with three adults with type one. And I mentioned I was going to call myself out on the podcast this week because of my graph thinking about it as my numbers. And their reactions were really interesting. They didn't tell me I was a terrible person. They didn't tell me I was a helicopter mom. They just said yeah, it's Gotta be tough. It's got to be hard. But it's really important to know those are not your number. It's not your diabetes. I think something else that's important to keep in mind is, this is so new, right? These closed loop systems are so new, there really isn't even a good instruction manual for how to know what your pumps settings should be adjusted to 10 history, the great job with the training, I think endocrinology practices are doing a great job with helping people but let's face it, most of us are getting advice on how to adjust this stuff from Facebook, which is not the best place ever, because I'm seeing a lot of people had a lot of highs, we had a lot of lows, the advice there is not going to be comparable, right?
So I'm going to give myself some grace. I'm going to give myself some patience. And I'm going to hope that I get better at this, that I continue to see the humor in this that hopefully Benny continues to see some of the humor in this and that I can continue to watch my language. I don't mean keep it PG. I mean to watch my language so that I am not saying my, when it comes to graphs, or diabetes, or more importantly, maybe most importantly, about how Benny feels, right? Isn't that the most important thing? I can see that number, but it's really about how he feels, how he wants to react at 15 years old, it is well, to the time to let him do that. So I hope I can continue to work toward those goals. Well, now you know why I am the world's worst diabetes mom. I really hope that if you get a chance to check the book out, you let me know what you think about that as well. It is available as an audio copy and you can get that for free. There's lots of opportunities there. I will link up all this stuff on the episode homepage. There's also a transcript of every episode beginning this year, and that's very popular now. So I'm hoping to go back soon and transcribe more of the episodes. We have almost 300 of them now. Holy cow back next week with our full Interview episodes. In fact, next week more McCarthy is back, ask the de moms is back. And we're gonna be talking about a variety of things, answering your questions, including talking about driving, because Benny just got his promise. And yeah, we're trying to figure all of that out as well. Oh my gosh, this stuff never stops. So I will see you back here for that on Tuesday. And in the meantime, be kind to yourself.
Benny 16:27
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged.
Transcribed by https://otter.ai
This week.. what is monogenetic diabetes and why should we – on a mainly type 1 diabetes podcast – care about it? The majority of people with monogenic are misdiagnosed as type 1. People like Kristin Skiados who thought she’d lived with type 1 for 38 years and her daughter Ava, was also misdiagnosed.
MODY Quiz - Probability Calculator
We’ll talk about how this could happen, what it means for the rest of us and what monogentic or MODY is all about.
Check out Stacey's new book: The World's Worst Diabetes Mom!
In Tell Me Something Good, how a little sister’s diagnosis changed a sibling's outlook and career..
And what the heck is a diabetes merit badge? We’ve got em! (Find out more here)
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Join the Diabetes Connections Facebook Group!
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Episode transcript (rough transcript, please forgive grammar, spelling, punctuation)
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer 0:21
This is diabetes connections with Stacey Simms.
Stacey Simms 0:27
This week, what is monogenetic diabetes? And why should we on a mainly type 1 diabetes podcast care about it? Because the majority of people with monogenetics are misdiagnosed. people like Kristin Skiados who thought she was living with type one for 38 years.
Kristin Skiados 0:44
It really was a phone call that was the answer to a new life. And it was probably the first time that I was speechless on the phone and the fact that That this meant there was a possibility to not be on insulin was just amazing
Stacey Simms 1:06
Kristin’s daughter was also misdiagnosed. We'll talk about how this could happen, what it means for the rest of us and what might have genetic or MODY is all about in Tell me something good. How a little sister's diagnosis changed a sibling’s outlook and career plans. And what the heck is a diabetes merit badge? I got them.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am so glad to have you along here on Diabetes Connections. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two I don't have diabetes. I do have a background in broadcasting and that is how you get the podcast. Hello to any new people joining us from the Raleigh Durham, North Carolina area. As this podcast is airing, I am just back from the JDRF type one nation summit in that area and thrilled to meet many new people and see some familiar faces. Not too long a trip for me. Of course, I'm in the Charlotte, North Carolina area, but always fun to go to those conferences, see people in person, talk about the show, talk about the book, the world's worst diabetes mom, and make those connections that I care so much about.
And this is the second time that I have taken the diabetes merit badges on the road. I am so excited about this idea. This came to be I guess it's one of those ideas that came kind of suddenly but then was also years in the making. I have always thought that we deserve like a gold sticker or a huzzah! Or hurray when something goes right in diabetes land. You know,There used to be a joke in the community that when your meter read 100 that confetti should come out of You know, stuff like that. But when I was writing the world's worst diabetes mom I even mentioned in one of the chapters when I talk about the first injection I gave Benny at home that I really felt like I had done something monumental and I wanted to you know, shout it to the world. And that's how the nighttime ninja sticker was born. So they are kind of silly. Yes, there is one that is a nighttime ninja. These are actual stickers. When I say merit badge, I mean, these are stickers that you can buy things like date night diva, which means you had a conversation without checking your CGM data 1000 times hold music marathoner finally spoke to a supply company representative dia-diplomat, calmly explained that sugar doesn't cause diabetes, insurance hoop jumper, and on and on. A lot is are geared to diabetes parents, which is obviously my perspective, but I teamed up with Rachel at diabetees who's a previous guest to the show and very popular in the community for her amazing shirts at her great Etsy store. So I'm going to link up in the episode homepage and on social media, more about these stickers, you can buy them in batches. I also have a sticker that's not in the Etsy store yet. And it is wanted for not waiting. It's the DIY cowboy sticker. Because that is for my friends at night scout and all of you who are not waiting, we're gonna do something fun with that, maybe a fundraiser for them. We're still working out the details.
As I said, this came on kind of quickly. I decided in December that this might be a really fun idea. And I called Rachel and she was like, Yes, I'm in and I gave her a bunch of the ideas. And she came up with a couple of them herself. And then she's a genius when it comes to the pictures and the drawings and it really came together beautifully. So right now, there will be a link in the episode homepage. Diabetes Etsy store is the only place you can buy the stickers right now. And I have them on my book tour and Rachel as she goes out and about the conferences, she will have them as well. I'm really excited about them. They're very funny and silly and just a little bit of a pick me up. And if you have ideas for these as you see them and you can see all of them and her Etsy store, let us know we will definitely add as we go if they're popular and people really want them. Love to hear what you have to say
A quick note, this interview is longer than usual. But it is a very complex, frankly, and a very interesting subject and I didn't want to stop talking about it. So I'm doing something a little different. For this episode, we're going to do about half the interview. Then we'll go into our Tell me something good segment. And then I'm going to pick the interview back up. You can always listen to episodes on your own schedule, of course, but I just felt this was a really nice way to lay this episode out with an interview. That by itself is more than 45 minutes. Regardless, the whole thing will be transcribed on the episode homepage. I am thrilled people are loving the transcripts. So if you are one of them, please reach out and let me know. I'm so excited to finally be able to offer this I know a lot of people wanted it Thinking about trying to go back and do more episodes in the past, we shall see.
All right diabetes Connections is brought to you by Real Good Foods - high protein, low carb, real ingredients. easy to find in a store near you, you can just go to the website, click on that store locator. Type in your zip code in our area. I can find them at Publix, Harris Teeter and at Walmart. And if you'd like to order, their website is fantastic. Lots of great options. I mean, all of the options are on the website. Great breakfast sandwiches, grain free, high in protein, low in carbs, because they use ingredients like cauliflower instead of processed flours or processed starches so you don't get those weird sounding ingredients or weird preservatives. And you can find the list of ingredients right online very easy for the all of the ingredients are on the website, find out more, go to diabetes, connections dot com and click on the real good foods logo.
My guests this week are here to talk about monogenetic, diabetes The type of diabetes caused by a genetic mutation. There are about 10 different types of diabetes that are genetic like this. And we are talking about a specific one today. These are all very rare. Together, they account for about one to 2% of all types of diabetes, but they are very often misdiagnosed, and usually misdiagnosed as type one. If you have monogenetic diabetes, you almost always don't need insulin, you take oral medication, so it is a big deal. Now I have to admit, I struggled a little bit with this interview. I remember vividly researching, when Benny when my son was diagnosed, I was so hoping that it would be monogenetic, MODY or something else. And I struggle now, because there's not an easy test for this. You can't just call your doctor and get a quick result. As you will hear it is more complicated. So as you will hear me ask, what are we supposed to do with this information right?
My guests are Kristin Skiados who lived with type one for 38 years before genetic testing showed she didn't actually have it. And we'll hear briefly from her daughter, Ava, also misdiagnosed for years. And Dr. Tony Pollin, a Board Certified genetic counselor, a human geneticist, and she works with the mano genetic diabetes research and advocacy project that is aiming to get universal access to diagnosis and individualized treatment. So here is my interview all about monogenetic diabetes. Dr. Pollin and Kristin, thank you for talking to me. I am fascinated with this and I'm so excited to learn more. Thanks for spending some time with me.
Dr. Toni Pollin 8:43
Thank you for having us.
Stacey Simms 8:46
Let me start with with you Dr. Pollin, let me just ask you, what are we talking about here? You know, I know people we know there are different types of diabetes. But what is mono genetic
Dr. Toni Pollin 9:00
So if you just kind of, you know, break down, monogenic, you have mono, which is one, and then genic, which is gene, what it means is that there's one gene that's really important in certain cases of diabetes. And we actually know that almost all diabetes is highly genetic. It has a lot of hereditary influence, you know, so their genes, their variations in our DNA that we inherit for from our parents that act in concert with other factors to determine whether or not we get diabetes and whether or not we get type 1 diabetes, or type two diabetes, which even itself is a lot of different diseases. But for some cases of diabetes, the genetics is actually a lot simpler. There's some very specific change, like a misspelling and a gene that causes a person to have diabetes makes them very, very likely to have diabetes really explains most of it. So when we say monogenic, we mean that the cause of the diabetes can largely be explained by a change or difference or mutation in one single gene and that person,
Stacey Simms 10:07
and how is it treated?
Dr. Toni Pollin 10:08
how its treated is it depends on the type. So it's going to sound a little bit contradictory because I just said monogenic. But there's actually several different forms because depending on the individual, they might have their several different possible genes that can be involved. But when an individual has monogenic diabetes, it's one gene. Again, that's explaining most of their diabetes. And so depending on the type of diabetes, the treatment will vary, so some types of monogenic diabetes, the diagnosis doesn't make that much of a difference, but the one that's ones that were most interested in and actually the most common types, that does make a difference. So there's one type of monogenic or one kind of group of types of monogenic diabetes called maturity onset diabetes of the young, and that sounds like a strange name, but that was an observation made in the 70s 60s 70s even earlier, when it was realized that some children had diabetes that looked more like the type that older people got. They didn't need to be treated with insulin and they actually some of them responded really well to oral medications. And so getting back to your question, which is how is it treated? Some people with certain kinds of monogenic diabetes called sometimes these types are called Modi, three and moody one, and they're caused by genes and changes in genes.. And those are treated with low doses, a very old class of drugs called sulfonylureas, and these are drugs that help the pancreatic beta cells to make and release insulin,
Stacey Simms 11:44
those medications is that like Metformin or these oral medications?
Dr. Toni Pollin 11:48
There are medications but what's interesting is back when these types of diabetes were first discovered, when it was discovered that you know you had these children who didn't quite fit either way, they were kids They were part of the way they why and maybe part of why they call it maturity onset diabetes of the youngest because they responded to the medication that was used in adult diabetes, Metformin did not exist. Back in the 60s, there was only one kind of oral medication, there's only really one medication besides insulin that could treat diabetes. And that was a class of drugs called sulfonylureas. So that's things like glyburide, and other drugs like that. And what those drugs do is they help the body to make insulin. They help to stimulate the body's capacity to make insulin and to secrete the insulin and really they said stimulate the body's capacity to secrete the insulin. And so the drug Metformin is is among many drugs. And sulfonylureas still use, but Metformin is actually safer. And so and it's, it's often the first drug that's tried and type two diabetes. The problem is if you think somebody has type two diabetes, and they really have one of these modes, These are these transcription factor types of diabetes, then they won't respond because their problem is in secreting insulin. Metformin helps you to respond to insulin. Metformin is what's known as an insulin sensitizer. So,
Stacey Simms 13:12
but I took you down that road because I mentioned Metformin.
Dr. Toni Pollin 13:15
So that's fine, though, because that's important. And that's actually ironically, one of the reasons why a misdiagnosis is even more of a problem today than it was a long time ago, because it used to be that people were treated with the type of drugs that actually work with monogenic diabetes. Yeah, so yeah, so but that's just one of the treatments. Now, there's another whole kind of class of monogenic diabetes that doesn't actually require any treatment. And so this is due to a partial deficiency of an enzyme called glucokinase. That kind of tells the pancreatic beta cells that there's glucose around and catalyzes a chemical reaction to people who have that form. They actually have a lifelong Mild hyperglycemia that if it doesn't have any other causes, then it's it's largely benign. And it actually doesn't respond very well to treatment. So knowing that you have that form, which is called glucokinase diabetes means that you could discontinue treatment.
Stacey Simms 14:16
All right, Kristin, let me bring you on because you lived with what you thought was Type 1 diabetes for a very long time. Can you tell us your story?
Kristin Skiados 14:26
Yes, I was diagnosed at the age of five, back in 1980. And I had all the classic symptoms of type 1 diabetes. As a matter of fact, when my parents didn't know what was going on with me, one of my friends moms was a nurse. And she said, geez, yeah, I think she might have diabetes, and I ended up in the hospital and the very high glucose. they diagnosed me immediately with type one, and I was put on Matter of fact, I was put on purified pork insulin, and then move to bovine and, and I stayed on insulin for a better part. Love for 38 years. I didn't move on to a pump when I turned 25. And life was just normal for me. I don't ever remember not being diabetic. And I think that was a good thing. I was so young when I was diagnosed, and I don't know what life is like, not having it. And I know it was an adjustment for my family for my siblings, because, you know, my mom made them do all the same things I did minus the blood sugars and the insulin. But they had to eat it and they had to have snacks and they had to get up early to and it just became a norm in our house. Yeah, I went to college, I did all these great things, traveled, played sports, got married my husband and had two kids.
Stacey Simms 15:57
Alright, so fast forward then. So Your daughter Ava, who is now 11. She was diagnosed with type one as an infant. And I imagine that that was, you know, devastating not only because you you've already been through it yourself, but she was so young she was 15 months.
Right back to Kristin in just a moment, but first diabetes Connections is brought to you by one drop, one drop his diabetes management for the 21st century. One drop was designed by people with diabetes for people with diabetes. One drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning one drop mobile app, sync all your other health apps to one drop to keep track of the big picture and easily see health trends. And with a one drop subscription you get unlimited test strips and lancets delivered right to your door. Every one drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your doctor visit, your personal coach is always there to help, go to diabetes, connections calm and click on the one drop logo. Now back to Kristin, talking about her daughter's diagnosis.
Kristin Skiados 17:17
You can have a little bit of the same classic symptoms that I had. A few things were different. And when I kind of looked back on it in hindsight, there were signals kind of all along, I think, you know, she had thrush in her mouth as an infant a few times. She always had yeast infections, diaper rashes. When I look back on it, we're like, oh, maybe this was the manifestation of this but when she was 15 months old, she was still 17 pounds. She was eating a ton of food. I mean, she was the top of the zucchini, whole sweet potato, half a chicken bread. You know drink milk yogurt. Then two hours later, we're drinking more milk or having more yogur getting up in the middle of night. He wasn't excessively peeing all the time. You shouldn't have frequent urination. But she was just underweight. You know, she was the amount of food she was eating didn't match what her weight should be. So I kind of had it in the back of my mind. Well, maybe she has diabetes. She had bronchitis before she turned a year old that we went and we got the blood work done. And her fasting glucose was not actually overly high. It was in I think, the 200 but she was diagnosed as type one. And we had compounded insulin, they had a you know, dilute her insulin because of her at her knees and, and it was devastating in the fact that this was something I never wanted her to have, you know, so there was this mother's guilt of my gosh, you know, she got this from me. And that was Very difficult to deal with and, you know, not so much myself having diabetes, but now my daughter was going to have to do the same things I have to do. And her life wasn't going to be normal. And we had to say goodbye to that normalcy was almost like a death. You know, it was the life that we knew was now gone. And we had to readjust and, you know, her insulin had to be on ice. I had to be cold all the time. So we were always walking around with our refrigerated bags, we have tons of ice packs,
Stacey Simms 19:33
is it because it was diluted it had to be cold,
Kristin Skiados 19:35
okay, and in where we live, we don't have compound pharmacy, so it had to be shipped from Baltimore. Well, and it's the same thing my parents went through this this everything's turned upside down and falling in her blood sugar's every night 7pm constantly changing insulin to carb ratios and, you know, she was on shots and half unit so you know, trying to draw half Unit insulin doses and it was overwhelming. And this is coming from me who's lived with diabetes. It kind of knows more than the average person, you know, but even still, it was a huge adjustment. It was really, really hard. It was a hard pill to swallow life. Now with two diabetics in the house. A lot of care went into Ava, you know, I kind of put myself on the back burner for a little bit trying to manage her and manage me and it was a challenge and being that younger son couldn't communicate with me,
Stacey Simms 20:33
right? That's so difficult. So when in this journey then because here we are talking to you on a podcast about mono genetic diabetes. When did you find out what she really had
Kristin Skiados 20:46
said we were at one of her just regular checkup appointments at University Maryland and Medical Center, and Ava's nurse. She had presented us with this study. Asked if we wanted to participate. And I spoke on behalf of Ava and said yes. And being a biologist myself. I thought monogenic diabetes. And when Ava was diagnosed, I kept saying, How does she get type one like there is that genetic component to it, but for type one day, I think to be passed on Dr. Paul, and you can certainly correct me if I'm misspoken here, there's a lower percentage of inheritance rate for type one computer, obviously, money. So I can see, you know, all the research at the time when she was diagnosed with stem cells, stem cells, stem cell, I wanted genetics, genetics, genetics, and nobody was doing genetics. And so when this opportunity came about, I was like, Yeah, I want to find out more about this. I'd never heard of monogenic diabetes. And I started reading up on it and I thought, This is what I've been looking for. This is what I wanted now. So we entered Ava into the study, and got our blood work done and just waited for our results.
Stacey Simms 22:06
And how old was she at the time?
Kristin Skiados 22:08
She just turned nine.
Stacey Simms 22:09
Oh, so this has been going on for a very long time. This is her whole childhood. And Toni, let me ask you, I understand, how do you live with what you think is type one and it's really something else. I mean, is it dangerous to be on an insulin pump? Is it dangerous to be treated like a type one when you when you actually have something else?
Dr. Toni Pollin 22:31
Well, in some cases, it's not necessarily acutely dangerous, you know, because the problem in all diabetes is the problem with blood sugar. And in certain types of monogenic diabetes, it's because you're not producing enough insulin. You can treat it with insulin and that'll be okay. But there's a couple of reasons why it would be preferable not to do that. And one would be of course, as I think Kristin and Ava will be able to tell you about Better than I can that most people seem to prefer taking a pill to wearing a pump or doing injections. But the other thing is that when you think about, you know, just think about anything that you have wrong with you. It's almost like you know, you can put a bandaid you can kind of treat it superficially, or you can treat it in a more in a kind of deeper way you can treat the underlying problem sometimes not everybody, but for some people, they might be fine on insulin as Ava and Kristin were, but you might be able to be even better if you're treating the underlying problem.
Stacey Simms 23:31
Alright, so let's go back Kristin. Ava's nine, you get the results. Were you both in the study or did Ava get the results in that? They said, Hey, Mom, we better check you too.
Kristin Skiados 23:41
Well, you know, when the study was first presented, I said, Hey, can I get in and they said only if Ava's positive and she presents a mutation. So she had her blood work done in May and we got the official diagnosis on December 5, and I get it. Like I always get choked up talking about that phone call because it really was a phone call that was the answers to a new life. And it was probably the first time that I was speechless on the phone with that with Dr. Three, and he had called me with the results. And the fact that this meant there was a possibility to not be on insulin was just amazing. When we were going through this study, we never really presented much to Ava, because we didn't want to give false hope. You know, we didn't want to build something up that might that may or may not be when we were going through this. You know, we just said what we're going to see if your diabetes can be treated differently. When we got the news that she had kcp diabetes, often known as MODY 13 this is one of the forms Where you can take sulfonylureas instead of insulin. But that's it, you know, it's a 90% success rate of 10% failure rate. So that was something that we didn't want to, once again get our hopes up with her. So we were very cautious with how we proceeded through this whole thing. You know, the news of her having this mutation was amazing. It was probably one of the greatest days of my life. And then that meant Hey, I get in the study to I was I was really happy about that as well. Ava came off of insulin within two weeks of taking the globe, your eyes is still on your reality. But it wasn't an easy process. It wasn't like just start taking a pill and come off insulin. You have to wean yourself off of it. She she had a difficult time she was low. Miss the time like in the 30s. It would take hours to come up I've had to like leave work and pick her up in school and Then you know, at night she'd be, you know, 400 and, and it was kind of like being in that first diagnosis stage all over again with CGM going off and we got her regulated and she's great. Her A1C was just recently like 6.2 I'm sorry. 6.9 she corrected me. I'm sorry. 5.9 Her A1C was 5.9. Yeah. She responded immediately to it like a one See, Why's she was down. Within two weeks of coming off of insulin. Her agency was down into the under seven,
Stacey Simms 26:38
right and this 5.9 is now what two years later?
Kristin Skiados 26:41
Yeah.
Stacey Simms 26:43
And what happened was you did what did you get that phone call? What was that? Like?
Kristin Skiados 26:48
I got a call from Dr. Street in February I think was right around Valentine's Day. And you know, she called and told me that I had the same mutation and It was, you know, once again that see it was like hitting the lottery. It was just something I couldn't believe I was hearing, you know, and of course, you know, the emotions come into play with it. And I thought when she was diagnosed with diabetes, I felt incredibly guilty that I had passed this disease on to her. And now when I look at it, I am so happy that if I pass anything on to her disease wise, thank goodness it was this because if she could still be on insulin, I could still be on insulin. And we're off and it's, it took me about a month to come off of insulin. I had a couple things working against me in this process. First off was my age. I was in my 40s to I think that oldest documented patient in literature was about 36. Oh, so there's a quite a bit of an age difference there. And plus I had died. I was on insulin for 38 years. Compared to another documented case, I think where it was significantly less, you know, so that 90% success 10% failure was pretty heavy for me because I wasn't necessarily responding to the medication as quickly as Ava did. I was kind of not having any lows. And I think Finally, like when I had my first low, I think I was in my classroom teaching, and my students were like, you know, what's wrong? I said, My blood sugar's low. And they're like, Oh, yeah, what do we do? I go, nothing. This is great I with them, because my students had kind of followed me and Ava kind of through this process. And I was like, No, this is I need this to be low. And then it took me about a month I came off of insulin essentially, it was April 28, is when I came off of insulin and I just had my A1C done, and I'm 6.5 Right now, and I take my glyburide twice a day Ava takes it three times. I know that my endocrinologist at Hopkins was shocked that I had a form of monogenic, and he's pretty keen on picking up things like that. But he said with my particular mutation, to KCNJ11. Geez, it mimics type one. And it's harder to identify a KCNJ 11 compared to that of a of a type one because they do mimic each other.
Stacey Simms 29:34
Let me stop you just for a second. Toni. I have so many questions. I think you know, my first reaction as a mom of a kid with type one, it goes back to this first days where we're all thinking, couldn't this be something else? Isn't there another possibility? And I remember find it I found MODY and I found other types of diabetes and I asked my endocrinologist and he said, Stacey, I really wish That he could just take a pill, but this is type 1 diabetes. So am I now supposed to go back or all the parents and individuals with type one listening to the podcast? What are we supposed to do? Should we go back and demand these tests?
Dr. Toni Pollin 30:15
So this is the really hard thing. So a couple things. One of the things that I do worry about and kind of want to temper is that, you know, of course, most people with a diagnosis of Type 1 diabetes actually have type 1 diabetes. And the the study that Ava and then Kristin were in the purpose of that study was really to find a realistic way to make sure not that necessarily every person with diabetes gets tested, but that every person with diabetes gets considered as a possible candidate based on certain red flags that clue you in so there is more overlap, I think that people realize and how people with different types of diabetes present and the resist study done. I sort of always knew this anecdotally, I come at this from kind of a unique perspective. I trained as a genetic counselor, and then went to Winton, and became did research and did a PhD studying the genetics of type two diabetes. And I realized that we had a lot of things we were promising about what would happen when we understood the genetics of type two diabetes and realizing that actually, with some of these monogenic forms, if we could just find the patients, we could already make a difference in their lives. And so I began to realize that it just often wasn't considered, or it was considered so rare, as long as not to exist.
And then in 2012, there was actually a study published that was a study called the search study where they were trying to find all the diabetes, what caused diabetes and in a whole bunch of children at different centers in the country, and they found that you know, at least 80% of the time or more monogenic diabetes or specifically MODY is misdiagnosed, as either type 1 diabetes or type two diabetes, it can be mistaken. There are clues that you can look for. So how did Ava and Kristin end up in our study, when you know their own doctor didn't suspect them? So one of my team members I happen to have on my team, a mate, I'm not sure she may be the only physician who's double board certified in both endocrinology and medical genetics. And as one of our strategies, we had several strategies for identifying patients and trying to find ways of identifying patients and medical systems. One was using questionnaires to have simple questions for the red flags I'm about to tell you and also getting referrals. But also she just started she started to actually look up in the charts of patients who were coming for treatment for their next appointment to look for these red flags. So the one of the red flags we were looking for was children who are diagnosed before the age of 12 months, because we actually know that if they're if you're diagnosed before the age of six months, which is very, very Rare, the overwhelming majority of those cases are monogenic and not type one. It gets more and more likely to be type one as they get older, but the sort of gray zone, one of the things we were looking for was any children diagnosed before 12 months. Well, Dr. Street and saw Ava was coming in, she was diagnosed at 15 months, it was kind of Gee, isn't that you know, that's, that's pretty young. That's kind of borderline, you know, you sort of the line kind of creeps up, because you want to make sure you don't miss anybody. Then when we realize too, that, as Kristin pointed out that her mother also had type 1 diabetes, even though it's diagnosed with a little over age, that raised the suspicion. So that's actually one of the things they look for is when you see type one being transmitted from generation to generation, it happens and there's definitely an increased risk of children. But if it's monogenic, then the risk is more like 50%.
So those are one of the things what's really important is that if it's type 1 diabetes, usually not always, but usually there are antibodies that indicate the autoimmune process. That says that the beta cells are going away, they're being destroyed by the immune system. But you have, especially the right antibody tests, and you don't have those antibodies, that's a red flag, it could still be type 1 diabetes, but when you get anybody's tested and you don't have them, then it raises the chance. The other thing is that the longer the C peptide persists, that also raises the suspicion because you know, C peptide, is a measure of whether the pancreas is actually producing insulin which you can measure even if a person is taking insulin injections, because it's it's the kind of byproduct of insulin that's produced by the body. Those are the kinds of things they look for sometimes somebody is we also look for people this has a really good likelihood of picking people up people who are diagnosed with diabetes, but it's not type 1 diabetes, like it's somehow it's known not to be type 1 diabetes, says Lena we might see some diagnosed with Type Two Diabetes at 25. Especially especially person is not overweight, not obese. So there's just see these sort of a typical situations that raise the suspicion. So you know, there's these characteristics. And we turned out that was our best characteristic for picking people up diagnosed with non type two diabetes and then we can non type one, then we confirmed it by looking at the antibodies and C peptide, then got hits is just, if you think about a physician who sees thousands of patients with diabetes, they're going to start to kind of notice like this one really looks a typical. So people start, you know, just noticing something a typical and sometimes it didn't always fit with the exact characteristics that we were looking for. But it almost fit and it sounded like it could be it sounded like you know, basically this is, you know, a child who maybe doesn't really need insulin.
I mean, there are cases published there's an actual case report published of adolescent rebellion leads to diagnosis of monogenic diabetes because a teenager decided to stop using his insulin and was fine. And so they suspected. So I think earlier when you asked about, you know, what's the consequence of being on insulin when you don't need to be, I thought you might also ask, you know, why is this? Why are so many people you know, not correctly diagnosed. And that's it that there's some people not knowing about it. But then even if people know about it, then there's a lot of overlap. But there are these things you can do. There's a way you can put out links, but we've started to develop resources to help those patients and providers to start to think about it. And there's a website at the University of Exeter, where they have a calculator, where you just put in really basic information like hva watse. And whether you have a parent with diabetes, and it actually gives you based on their own database, the percent chance that someone you know, might have a mutation in one of these genes. But you know, as you can hear, no matter what you do, it's just not always straightforward. And that's what we'd like it to be.
Stacey Simms 37:00
I just and this may sound very ignorant, so pardon me, I can't wrap my brain around the fact that we're all supposed to be so careful with insulin, right? And people are terrified to, you know, to give too much. And yet you got 4% of people with diabetes who don't need insulin necessarily, who are taking it every day and not having these terrible adverse effects. I guess my question is, I'm almost more confused. I might. So not everybody is supposed to get into the testing, but you could be taking 40 units of insulin a day, and have monogenic diabetes, not need the insulin and not know it.
Dr. Toni Pollin 37:38
Right. So when I say not everybody should get genetic testing. I should probably rephrase that if there were a way and I believe there will be in the future for everybody to have genetic testing, then it would make sense got it, people if you know, I'll probably a lot of your listeners are, you know, podcast listeners are probably listening to some of these genomics podcasts. And you know, we're we're now at the point where more and more people have their whole genome sequenced in many of our kind of visions of, you know, what is genomic medicine look like, people often talk about, oh, I want to, I want to have genetic testing to see what I'm at risk for, I want to have my genome sequenced to see what I might risk for. But what I see is in the future, when everybody has access to their genomic data, then it could just become a very routine thing, where, you know, you get diagnosed with diabetes, and they run a bunch of tests, because forgetting about MODY, there's still tests to run to figure out what kind of diabetes you have, if you're, you know, if you're kind of on the border, if you're 29 years old, you're a candidate for type two, your candidate for type one, especially if you're, you know, if you're overweight, you know, some of these other risk factors. So in my dream, everybody has very ready access to their genomic data. And so so if somebody is diagnosed with diabetes, then you'll be able to run an algorithm that will pull up whether there are variants in any of these genes. It's just that we're not there yet, and it's still, there's still costs associated with doing genetic testing. So what we are needing to do right now kind of till we wait till the genome era is that we really need to pay attention. I think a lot of what we need to do is, is we need to, I think stories are the key. So that's why I was so excited to come on here with Kristin and Ava. Because I think that every story is different. And I got interested in this, for the reasons I said that I realized that there was a way that genetics could be used to help. And I A lot of what I knew was just from reading journal articles, but as I got started, you know, got funding for research and started doing the research and started talking to patients, I kept learning more and more nuances. And so I think one of the keys is just finding out I think there's a whole lot to this that we don't know because we don't know the full extent of the patient lived experience, but when we do that will help us to help other people.
Kristin Skiados 39:51
I would have never known I was a monogenic diabetic, had it not been for Ava because my people Parents don't have diabetes, there is zero history of diabetes in my family. So if it weren't for Ava, having diabetes, I would still be on an insulin pump and I would still be taking insulin and probably spend the rest of my life on insulin. So I'm very grateful, of course to my daughter for having diabetes is a weird thing for a parent to say. But when you when you look at, you know, the scope of kind of what's happened in our life and what and how we went from, functionally a pancreas that's because that's what our life had changed to, we kind of stopped being human, and we started being in Oregon. And there's not too many chronic diseases out there where you actually have to do the job of the organ that isn't working. And that's and that's what diabetes is and you become your band, forget, you know, but manipulating the pump and the shots and everything. To go from being a pancreas now to being a person, again, it's a pretty amazing thing. But once again, my position that I was type one the whole time. So if it weren't for Ava, being in the study, this would not be in my life today, being insulin free and on medication. hopefully at some point, people will have access to their genome to identify things like this so that you know, another person doesn't spend 38 years of their life taking insulin when they don't need to.
Unknown Speaker 41:40
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 41:45
Much more to come. We will continue with our talk. The second half of the interview is coming up, including my chat with Ava, Kristin's daughter, and I want to let you know that if you're thinking what are my chances, what are my child's chances of actually having managed genetic diabetes, there's a short quiz you can take to see if it is worth talking to your doctor about this. And I am going to link that up on the episode homepage. It's just a couple of questions. I took it and really doesn't seem like it is worth it to talk to our doctor, but you can take it for yourself and find out more diabetes Connections is also brought to you by Dexcom. And you know, we started with Dexcom back in the olden days before share. So trust me when I say using the share and follow ups makes a big difference. And I'll tell you how long ago we started. We were cleaning out some things and Benny came running into my room and he's like, remember this and it was the share cradle. That's what for you new people. That's the only way we could share for a little while was plugging the Dexcom receiver into the share cradle. But you know, it makes such a big difference when you can see those numbers right. And you have to set parameters, at least we do about what I'm going to call him how long to wait. You know not to overreact to everything. It really helps us talk and work about diabetes less if you had a sleep over or away on a trip, it gives me so much peace of mind. And I really like that I can troubleshoot with him, because we can see what's been happening over the last 24 hours. And not just at one moment. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to diabetes, connections calm and click on the Dexcom logo.
Time for Tell me something good. And I got a great message via Facebook from Christina and she writes, “I have a good news story for you. My older daughter Natasha, who is 24 has been a great help to her younger sister rose, six rows was diagnosed three years ago. And Natasha has been there for everything. The hospital stay the classes and everything in between. She is busy with her own life, but always had time for us and her little sister because of her sister who has type one And her brother who has Crohn's, she is getting her master's degree to become a dietitian.” Christina, thank you so much for sharing that. Thank you for the great picture that we will share on social media. You know, we know that any chronic condition is tough on the family, and it's tough on the siblings who don't have it, right, because everybody's life is affected. It is hard stuff to go through and make the siblings feel included. They get so much empathy and understanding, but there's can be a lot of resentment and normal bad feelings, too. I think it's important to acknowledge that. So I really appreciate you sharing this and all the best to Natasha, she goes forward in her studies Keep us posted.
And Christina also added and I'll put the city but that's very self promotional. But Christina added that “I want to tell you how much I appreciate you and your podcast. So many times. I feel like I'm living in my own world with this crazy diabetes. I listen, and I instantly feel better. Thanks. Keep up the great work.” Well, Christina, you just made my day. Thank you so much. For that, you know, I gotta tell you, it's so selfish to do this podcast because I do it and I instantly feel better. It's really just a nice way for me to be connected to the community. It's really it's not a one way street here. So thank you for that very, very nice note.
All right, let's get back to our talk on moto genetic diabetes. This is the second half the interview, and we're going to pick up here with a few words from Ava, who was initially diagnosed as a baby. But a study found that at the age of nine, she didn't have type one at all. And I want to let you know here, she talks about her insulin pump and her elementary school experience. And while everyone is different, you'll understand in a moment why I'm saying this, but this did not match our experience at all. And I think it's really important especially if you are newer to an insulin pump or considering one for you or your child, that if your child is being excluded, or cannot do certain activities with an insulin pump, or is being told they cannot. The staff at that school needs better education and It's a great idea to talk to your educator or your endocrinologist or even your pump Rep. To say, my child can't do this with this pump. How do we work around it? Because as you know, if you listen, having a pumps and stage two with tubes, pumps, and he never stopped my kid from doing anything. All right, so let's pick it back up. And here I am. I am talking to Ava, when your parents told you that you actually didn't have type one. But you had something else. Do you remember what you thought about that?
Ava Skiados 46:29
I thought that it was worse, because my mom just told me that I didn't have type one, but I thought that it was a lot worse.
Stacey Simms 46:38
And then they explained that it was good, just going to be different. And did you feel better about it pretty quickly.
Ava Skiados 46:44
I yeah. It took like an hour before they told me that I just fell off of insulin.
Stacey Simms 46:51
Do you remember? So it's been about two years. I'm curious if you remember what it was like to take insulin and where an insulin pump
Ava Skiados 47:00
actually change my site every three days. And when I had to wear the pump, I had a cord. And it got stuck on things. And I couldn't do much physical activity or I could, but like I couldn't do certain things in gym, because it was off the little hack that connected to my catheter, or my pump was all about and a disconnect that way. So I couldn't do many things that other kids got to do. So just kind of like left out and sitting on the lawn, Jim.
Stacey Simms 47:36
Oh, well, that stinks. Tell me what you do. Now, you don't wear an insulin pump. You take a pill a couple of times a day.
Ava Skiados 47:43
I take the post three times a day. And every except for the fact that I can do more things that I couldn't do. I can go without I can just do Without leaving, as my mom can get a card calculated is this and I need to put it into my
Stacey Simms 48:09
your mom talk about what it was like before cuz you know she thought you had type one also?
Ava Skiados 48:16
Yeah, I don't talk about it. No one really brings it up. But if someone brings it up and asked me like how it was before I came off as one. I don't really like to talk about it but I can stuck with how I was before. Grab your eyes.
Stacey Simms 48:34
Do you mind me asking why you don't like to talk about it? It's okay if you don't even want to answer that.
Ava Skiados 48:39
Because I couldn't do a lot of stuff in school. When I was in like third or fourth grade, that's when I finally come off. But when I was in kindergarten through about third or fourth grade, I couldn't really do the last one. I couldn't do many, like I it was hard to do a play that I was it. They had a microphone and my side too, but it always got to hold on to the microphones. We had to readjust it regularly.
Stacey Simms 49:17
Have you sat down and talk to each other about how extraordinary this all is? Because it's hard I think when you're the people in it to see.
Kristin Skiados 49:26
Well, you know, when we were presented with the study option, you know, they thought like, Oh, we have to go we have to get blood drive. She was like, No, I don't want to do that they go you know, but you have to understand not only can this help us but you know, it can help other people and really, when we started getting involved with Dr. Poland through med rapid going to the French for life conference that you know, I totally event that, you know, what we're doing is helping other people. We're giving other people People the potential opportunity to experience life without insulin. And that's the beauty of medical research. And I've done a lot of different and participated a lot of different research studies, where, you know, we kind of get to see the outcome of that. And I and there's an intrinsic value to doing things like this and to talking about it tends not to talk about as much as I do. But yeah, like we've, you know, we've talked about, you know, why we're doing this, and you know, why we're doing the podcast and why we went to Florida. And that was one of the most fantastic diabetes conferences I've ever been to, and why we're sharing our stories because there's other people out there like us, and you know, she's 11 and, and she's in her little 11 year old world, and I'm not sure she really kind of sees, you know, the outcomes of what we're doing. I don't think she's going to really realize that until she's a little bit older. See, wow, you know, there's people in my high school that have monogenic it, you know, when she I think she begins to meet other people that have a form of monogenic?
You know, when I was type one was diagnosed with type one, I was the only person in my town. And I was one of only like nine kids in northeastern Pennsylvania with Type 1 diabetes. So talk about being kind of your own being in a community. Everyone knew I was diabetic at the age that I'm at now and I'm a teacher. Every year I have the diabetic kids, they put them in my class, I think the conventional other diabetics, put them with sciatica, pain, you know, and even got a couple kids in her class that are type one, you know, and so you kind of feel that you're not alone, that you're not just this person with this one illness that, you know, doctors, you know, can treat but it's hard to manage. And I think that as we're moving forward with the research that Dr. Poland is done, that There's going to be a shift where Ava is not going to be the only monogenic, diabetic patient or kid in her school, or in our county, you know, or in Southern Maryland as a whole. Hopefully we'll see. There's more kids out there that had been re diagnosed with a form of monogenic. So we talked about it in terms of the value of it, but I think for an 11 year old, it's a little bit harder to grasp the big picture. When you're still the only kid in your school that monogenic, she's not the only diabetic, but she's the only monogenic kid. You know, when she started Middle School, we had to have a meeting with the administrative team and the nursing supervisor because they didn't know any of this stuff.
Stacey Simms 52:49
Well, wait, let me jump in. Because I know we're getting really long on this interview guys, but I may have misunderstood so she takes a pill three times a day, but does she have to do anything else? Are you still checking blood sugar and worried about highs and lows
Kristin Skiados 53:00
So you we are we have any we still do worry about her highs and lows. So I mean, if she's high, it will come back down when she's low. Yeah, we still have to treat it, you know, 15 grams of carbs. We still have that protocol. She wears a CGM most of the time. So she really just kind of checks in with her nurse and she has to take her glide right at lunchtime. So she visits the nurse there. But you know, when you're dealing with something that's not the norm, people get a little bit nervous with it.
Stacey Simms 53:31
All right, before I let you go and Toni, let me ask you to weigh in on this one more time. I just keep coming back to what do we do? I know that in the future, hopefully we can get more testing. But is it a question now of Okay, my son was dead. Let's use me. My son was diagnosed at 23 months. He looks like classic type 1 diabetes. No one in our family had diabetes before him. I don't recall. You know, not needing Insulin at any way, shape or form. In fact, he's had that classic journey of teeny tiny doses. I remember growing up those quarter units in a syringe, we couldn't see it at all when he was 23 months, and then the basal rates doubling and then doubling again as he hit puberty. So I think we're probably not a good candidate to be tested for this. Right? It certainly
Dr. Toni Pollin 54:21
sounds like classic type one, I should do my kind of disclaimer now that I'm not a physician. But, you know, I think part of the problem is that we still don't know what we don't know, which is why what we were telling people you know, when we've now we've been to Kristin and Ava and I were mentioned at Florida Kristin and I went to the friends for life conference recently, more recently in Falls Church and just the importance of getting those antibodies and the C peptide, because you know, to be No, I think it's becoming more routine to get them. But just because it's possible to even the C peptide, it's possible to not show When you see peptide in the blood because this particular type, so the type that Kristin and Ava are have is actually different than the main types they talked about, where you know, the insulin gets made, but there's this channel that doesn't function properly, and so the insulin can't get out. So I say, look for the typical cases. But if you have any doubts, if you're curious, at least make sure you've kind of had these these kind of baseline measures that make it clear that this really is type 1 diabetes, because we don't know every possible scenario that this can present as I also did want to say, because I wanted to kind of correct something a little bit you were asking earlier, you know, is there harm to being on insulin when you don't need it? I can tell you that this KTP diabetes is potassium channel diabetes. It's most common in you know, really little infants, like we're talking like zero to six months. And I've heard some of those parents, for example, there's a little girl in Chicago, who's actually in a movie called journey to a miracle if you know Educational Resource and her I've seen her parents speak and talk about how she would have hypoglycemic seizures because it was very difficult to control her in her glucose with insulin, especially when she couldn't verbalize what was going on inside what really struck me I went to actually the the premiere of the of the movie they made when they showed it in Chicago. And actually, I think this movie is available on Amazon. So if people want to see it, it tells some of the story but what really struck me was these parents many of these parents saw this as a cure, which kind of surprised me because I thought oh, we don't have a cure but it's better but it to them it felt like going from a kid with a with really difficult to control Type 1 diabetes to you know, manageable, mild type two diabetes like the other thing I should this is kind of really bringing up a whole nother subject but some of the kids who have these mutations it actually affects it has it has neurological function and actually affects some of their brain function and some of that can improve with the treatment as well. So that's just kind of extra, but kind of getting, you know, back to your question of what do we do? This is what's keeping me keeps me up at night sometimes, but it's keeping me in research. This is this is what my research is really trying to do. How do we address all these barriers? I mean, we've talked about some of the barriers, genetic testing can still be expensive. We need to communicate to insurance companies what the genetic testing does and how it's useful. We need to communicate to providers worldwide, when we do the genetic testing, we need to improve the dinette testing. So there are better at telling the difference between which variations in the gene actually cause diabetes. And so one of the other issues that I have is I have a worldwide panel of experts in monogenic diabetes that can pull together not only their knowledge, but they can pull together their cases. So to give an example, the mutation that Ava has, was only reported one time in the literature and because it was recorded in the literature. We were able to say that it was an important mutation in this disease, otherwise we wouldn't have been able to. And so the solution really is communication. That's why we're here on this podcast. And people telling their stories, working together, being open and finding more people so that other people can help come up with other creative, creative ways. So
Stacey Simms 58:22
well, Toni, and Kristin and Ava, thank you all so much for sharing this story for giving us all of this information and for continuing the research. I mean, it's incredible to think about how many people might be walking around with a misdiagnosis. So thanks for coming on. I appreciate your time so much and you know, keep us posted. How about that? Isn't it difficult to think about being misdiagnosed and not having type 1 diabetes? I mean, as Kristin said, it really is a dream. It would be so nice to be able to tell my son Oh, sorry. You don't need to take insulin anymore. There were times during this interview where I kind of felt myself getting I got jealous. I got a little angry. I got resentful. I was very happy for them. I'm happy for any family that that, you know, turns the situation around. Although it doesn't sound like monogenic diabetes is a walk in the park either. I mean, let's be honest, but I had to let myself feel those feelings as we were talking. And if you felt them too, you're definitely not alone. Okay, next stuff on the world verse diabetes mom book tour. I'm heading to South Portland, Maine this weekend. Oh, it is gonna be so much colder. I'm so nervous being the southern transplant that I am. It's gonna be great. I'm talking to a group called the main pea pods, parents and providers of diabetic children. And I am thrilled to be going up there so excited to talk to this group and meet everybody. We're gonna have a great weekend. If you'd like me to come speak to you definitely reach out there's a page at diabetes connections. com called Community It's got our schedule where we're going, where we've been and what you need to do to request an appearance from me. I can come out and do the podcast, I can come out and do what I'm doing this weekend, which is the world's worst diabetes mom presentation, which is all about why you all should be more worst. Making mistakes is a really, really great idea. We have a lot of fun. Thank you, as always to my editor john q. kennis. From audio editing solutions. Thank you so much for listening. Our mini episode is going to come along and just a couple of days. Those are airing every Thursday. So I hope you can join us for that. I'm Stacey Simms, and I'll see you back here on Thursday.
Unknown Speaker 1:00:43
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress.
What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids.
Links referred to in the episode can be found in the transcription below.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Join the Diabetes Connections Facebook Group!
Sign up for our newsletter here
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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Beta Transcription - please excuse grammar, spelling & punctuation
Stacey Simms 0:28
Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two.
Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to Diabetes Forecast Magazine. We are in their January February issue as one of the top trending items for winter. It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading.
But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this.
So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe.
Now, I know what you're saying already, right? This is important. We need to show the real side of diabetes, right? We need to show more than the smiles when a kid gives himself a shot for the first time or you know, gets over the fear. If you listen to my longer show that airs on Tuesday, you know that every week we do a Tell me something good. And I very happily show pictures of those people who are featured each week, and I have been accused of being more positive and you know, too rosy sometimes. And, you know, but we're talking about realism. Right? Everybody says we need to show the hospital days they happen. We need to show diabetes isn't fair. Well, of course we do. Yes. Yes. We need to show that that is important. And I am all for realism. I promise it is not sunshine and unicorns and rainbows over here. But you know what we don't need to do to show that we do not need to exploit children. And that's what's happening here. These are kids who cannot give consent to be featured. They can't give consent. They're too young. And they have just as much right to their privacy as we do. How would you feel if someone took a photo of you at your most vulnerable, and posted it on Facebook?
Let's just back up and think about this. And I will get to when I think it can be done and how it can be done in a way that educates and informs and brings out emotion and still protects the child. But right now, let's say on these photos of distress, I did a little bit of research on this and there are a lot of articles about social media and photos. There's not a lot of research because this is Still so new. And when I see research, I mean real scientific published paper, that kind of research. But I did find some interesting articles. And I'll link all of these up in the show notes on the episode homepage. So here's an article from Dr. Kristy Goodwin, She's the author of “Raising Your Child in a Digital World.” She has a PhD in the impact of digital technology on children's learning. And she says that right now, sharing every part of our lives has been normalized by social media. But what happens really, when you dial it down is that it's a desire for a like, which is really a desire to feel connected, which she says is one of our biological drivers as a human, and it is needed to experience empathy. It does fulfill a purpose.
Dr. Goodwin says and here's a quote, “For many parents when their kids are seriously sick, they have lost all control and their world is literally spinning out of control. When parents go on social media, they have a sense of control over their life again, They can post things and choose exactly what aspects of their child's sickness that they want to post.”
Another article is from a pediatric hospitalist from St. Louis Children's Hospital, Dr. Shobha Bhaskar. She says, “We are all looking for support when our loved ones are not well, but when your child is running a fever or has a broken bone, please put down the camera step away from the screen. I'm sure if your child had a choice, they want to look their best to like you do. And your child would not appreciate a picture of them looking tired and rundown on the emergency room that we talk so much about patient privacy rules and rights. But what about the privacy rights of our little ones? Or do we think they just don't have any,” she says,
I'm going to take this one step further. Because I do think while we're on this topic of digital privacy, it's a good time to sneak in something else. In my Facebook group. I have a local Facebook group in the Charlotte area that I started, I don't know, maybe five or six years ago and when I wrote the rules and regulations for the group, the admin announcements. Here's what I wrote. “Please think twice about any pictures you post of your children. A picture of a pump inset on a naked toddler’s backside may be completely innocent, but there are creeps out there. This is a closed group, but there is no guarantee of privacy on any social media outlet. Please, please crop pictures like this very closely. So we can't tell what body part of it is for your child protection.”
And then I go on to say, “Same warning for posting pictures of your child in distress. This includes hospital pictures, pictures during illness, etc. You have our support and sympathy already, your child has his or her own right to privacy and may not appreciate being pictured online in such a manner. These pictures aren't banned. But take a moment to think about why you might want to post something like that.”
If you listen to carefully you might be saying Stacey what? They're not banned in your group but you just got on your high horse and told us how terrible they were? Well, they're not banned in my group, at least, and they are banned at some other groups. But here's why I felt like banning them outright would take away the conversation and the thinking, if you know that you're allowed to post them if you really need to, perhaps you'll stop and think about whether you want to a little bit more. And whenever anybody posts it, I usually send them a very gentle, private message, reiterating what I already talked about here in this episode, we support you, we love you, we're so sorry, Your child is hurting. But why are you posting that picture? Can you please think about your child's privacy? Sometimes I wait, because if the child's really ill, there's no reason for them to hear from me when they're in the hospital. Don't worry, I'm not direct messaging, a parent whose child is in a critical situation in the hospital and saying, could you please check your photo on Facebook? I mean, really, I'm not that cold. But I do if they're not in an emergency situation. I do do it right away, but it rarely happens in my group anymore.
What actually happens is we have conversations about why it's not a great idea, and what we're looking for, and what else we can do when someone's in the hospital. I mean, Benny had knee surgery a couple of months ago. And you bet I took pictures. We took funny pictures when they shaved his leg. I took a picture of his pump in the hospital gown. I took pictures of him and sent them to his grandmother, you know, going in thumbs up, that kind of stuff. I also took a picture of him coming out, because he was bundled up in so many blankets. He was so cold from the anesthesia coming out of it, he was fine. But that's not a picture he'd want me to post. But it was a picture he wanted to see later on. I knew he'd want to see how, you know, kind of funny he looked, but I knew he wouldn't want me to post it. So I'm not talking about not taking pictures, right. I mean, he had a terrible injury when he was about seven or eight years old, and we were in the hospital. And I took pictures. This was when we knew he was going to be okay when things had calmed down and he was stable. And I was sitting there with nothing to do feeling helpless. I took some pictures and sent them to my mom and my sister. And I showed them to Benny later on. I mean, they weren’t gruesome or anything. You know, if you're a longtime listener of the show, you may be thinking, I've never heard about this. And I'm not going to tell the whole story right now. You know, and I also it's a good time to point out that I don't share everything that's happened to Benny, I work hard to protect the privacy of my kids and my family in ways that make sense. So I have these pictures of him in the hospital at the time of that accident, but I didn't post them.
I did mention earlier, there are ways to do this. So how do you do it? Well, when he was in the hospital for his knee surgery, I posted a picture of I don't even know some of the hospital equipment, right, the IV bag, I posted something and I said, here's where you know, we're going in, everything's good. I'll keep you posted. That kind of stuff. And I've posted pictures of him drinking a juice box, you know, he's low and you can kind of see in his face he's look you know what to look for. Rather than a more dramatic picture I've posted on I use it to my presentations. Several years ago, I took a picture of his bedside table, which was just it was one of those horrible nights it was covered with juice boxes and test strips and, you know, inset changes, it looked like a war zone. And that conveys the difficulty of type one diabetes in a very similar way.
I posted this on my personal Facebook page, just to say, Hey, I'm going to be talking about this topic. And I was curious what other people in the community thought, and I got so much feedback. One of the pieces of feedback I got, which I thought was very, very interesting. And by the way, the vast majority of adults with type one that I heard from said, Please, please, please tell parents not to post pictures of their children. It really is something that I know people feel very strongly about. But I did hear from advocates who said, we need to get our cause across. We need to push we need to fundraise. I've two responses to them. One is we've been fundraising for JDRF and some other causes for 13 years. We have raised 10s of Thousands of dollars, we might be close to $100,000. If I sat down and added it all up, we have never posted a picture of Benny in distress. Has he been in distress? You bet. have I written about it? Have I talked about it? Sure. But we have found creative ways to show what goes on with diabetes. And I've never felt like I've exploited him to fundraise. And I know many, many other people who have raised a lot more money than me, who have never posted a picture of their child.
I also heard from people about what the DKA campaign. Now, if you're not familiar, there is a campaign and it's a great campaign to diagnose Type One Diabetes sooner. There are so many cases of children and adults diagnosed while they're already in DKA, while their lives are in danger. The most dangerous time to be type one diabetic is before anybody knows that you are and the thinking was, you know, we need to show the faces of this. We need to show what can happen so that laws can change. And as I'm speaking about this, I'm also thinking about the insulin for all campaign and People who are dying because they're rationing insulin, but I'm going to give you the example of Reegan Oxendine and this is a little girl here in North Carolina. She was a toddler. She died. She had type one diabetes, it was misdiagnosed again and again. Finally she was hospitalized but it was too late. And her story has been told several times, I'll link it up in the show notes. Previously Healthy was a wonderful bit of journalism, photojournalism done by the folks at Beyond Type 1, but I bring up Reegan because it actually illustrates the point I'm trying to make that we can affect change and we can get the point across even if in this case, it is a terrible point, without photos that are exploitive.
If you're familiar at all with Reegan’s story, what may come to mind is the most impactful picture in my opinion. And it's not her in the hospital, and it's not her looking ill and in distress. It's a devastating photo. It's just her mother's hands, holding Reegan's tiny little shoes. Her Shoes fit in her mother's hands. I'll post this picture. It's incredibly powerful. It's disturbing in its own way. But it is not exploitive at all. And it is a photo that really affected change. The law changed in North Carolina. Now is it as a strong laws everybody wanted and we've done episodes on this, I will link up more information on the episode homepage. As you can see exactly what happened. It's frankly, more of a recommendation for pediatricians but got the awareness out it got legislators talking about it. There are other cases of children and adults who have died. And they have been pictured online in many different ways. I am not going to judge those parents. You know, frankly, that takes us down a different road. I'm not sure how I feel about that. And it is certainly not for me to judge how those parents how those families react. However, that's not exactly what I'm talking about here. And I think we all know that I'm talking about the case of your child who's throwing up, run of the mill sick, you know, maybe has ketones that you're treating, who just looks awful. And you know, you grab the camera, because isn't that what we do?
It's so interesting to me how much things have changed. I mean, when Benny was diagnosed in 2006, nobody had a camera because it wasn't on our phones. Right? It never occurred to us to take pictures of Benny in the hospital with Type One Diabetes, being diagnosed because who would bring a camera to something like that? And you know what, I wish I had those pictures. Only because there were so many funny and touching and wonderful and and sad moments that I remember, but I'd like to see I'd like to see little baby Benny ripping off all the stuff that was on him. We had such a hard time keeping anything on him. He's like little baby Hulk pulling off the sensors and things like that. I'd like to see him maybe getting his first shot. He was so brave. I'd like to see his face. Sister hugging him, you know all the things that are in my head, but that I don't have a photo of. And it's because times have changed so much that we don't think about photos.
I have thousands of pictures on my phone, right? I don't even know what they're up anymore. We just take them in a screenshot and I save things and we don't even think about pictures anymore. But I'm telling you, these are pictures that we need to think about. I also think it's important to keep in mind and we all know this, but we don't really think about it when we're posting the internet is forever. And if you've posted a picture of your child in distress, child might be five years old, that photo will live forever. Your child will probably find that photo at some point in their life. So before you post another photo, just stop and think for one moment. I don't care if it's a closed Facebook group. I don't care if it's a private Facebook group. That's a bunch of bull. Nothing is private. In social media. The minute you hit post, somebody else can screenshot Somebody else can save it, somebody else can forward it, you have no idea where it's going, right? So just take a moment to think, why am I doing this? What do I need right now? If it's support and sympathy, I promise it's out there. If it's showing the real side of diabetes, I promise there's a way to show that without exploiting your child. And if the next time you post you're thinking, well, but think carefully, what comes after that. But what is stopping you? Is there a little bit of doubt in the back of your mind? If there is, you know, which other 10 minutes Think it over? You can't take it back once it's out there. I promise. There was love and support and sympathy and understanding and empathy and fundraising and awareness without posting these kinds of pictures.
Agree? Disagree? I know a lot of people feel very strongly about this. And I know when this gets posted, most people aren't going to listen to all the way to the end, they will see the headline and they will tell me I'm a terrible person. So keep in mind, I am the world's worst diabetes mom. You know, what do you think I really would love to hear from you. All kidding aside, we will put this in the Facebook group. I'll be talking about it on social media when the episode airs. And of course, I'm Stacey at diabetes connections.com. You can find that a lot more about the show about the book. And about this episode on the website. Of course there is a transcription. all the episodes beginning this year, have that transcription on the episode home page.
All right, back to our regular full length episodes every Tuesday, and then these minisodes on Thursday. I'm Stacey Simms. I will see you back here next week. And until then, be kind to yourself.
Announcer:
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged.
Transcribed by https://otter.ai
Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about Diabetes Wise from people who know it’s about more than the hardware.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and why it’s needed.
Stacey spoke to Korey on a previous episode about diabetes gear and mental health. Find that episode homepage here.
Join the Diabetes Connections Facebook Group!
In Tell Me Something Good – the greatest game of Marco Polo every played.. and Stacey finds her diabetes doppleganger.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Sign up for our newsletter here
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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!
Click here for iPhone Click here for Android
Episode transcription (it's a rough transcript, please excuse grammar, spelling & punctuation)
Stacey Simms 0:00
Diabetes Connections is brought to you by one drop treated for people with diabetes by people who have diabetes, and by dexcom, take control of your diabetes and live life to the fullest with dexcom.
Announcer 0:17
This is Diabetes Connections with Stacey Sims.
Stacey Simms 0:23
This week, choosing your diabetes technology can be complicated. Wouldn't it be nice if there was sort of a Consumer Reports for pump and CGMs? Enter DiabetesWise from people who know it's about more than the hardware,
Korey Hood 0:38
there's the physical side to wearing it, then there's this mental burden that is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is the distractions and the potential workaround. So you have to come up with in these various settings, whether it's school work, family relationships,
Stacey Simms 0:56
that's Korey Hood, who lives with type one. He's part of the Team at Stanford who along with the healthy trust created DiabetesWise, we'll talk about what it is how it works and why it is needed. In Tell me something good, the greatest game of Marco Polo ever played, and I find my diabetes doppelganger. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. And I'm really excited about what we're talking about today. Because I don't know about you. But when we went to pick out our pump for Benny, and I'll tell the story during the interview, it was just overwhelming. And while our educator was fantastic, I really wish we'd had just something to kind of compare and contrast the different types of tech like now exists with DiabetesWise. So we'll get to that and the interview in just a couple of minutes.
But you know, I get so many great things emails and messages and I'm so terrible at reading reviews and sharing this stuff with you. You know, there's all sorts of techniques and strategies for getting people to share more reviews and email you more in blah blah blah. I'm just terrible at that. But I have to share this one with you. Because it was like getting a message, like a message in a bottle from a time machine. So here's what happened. Casey messaged me. “Hi, Stacey. I'm sure you get messages like this one all day every day, but I couldn't resist reaching out. I wanted to reach out and tell you how you impacted my world for the better. My son was diagnosed with type one on the 21st of November of 2019. We are soaking in all the new information, trying to get sleep keep up with our jobs, all while trying to keep our regular life intact. I came across your podcast and more specifically, the episode titled all about babies and toddlers with Type One Diabetes. I immediately thought finally a podcast discussing everything we have been dealing with lately. Plus, it's run by a type one mom – score! and Anyway, long story short, she writes, I listened to it and learned a lot.”
“But that's not why I'm messaging you. I am messaging you because my son's name is Benny. And he was diagnosed just six weeks before his second birthday. His sister is four. If that wasn't enough similarities for you, we are also from Charlotte. They live in Charleston. Now, I know this might not mean that much to you. But for me listening to your podcast, shifted my world, listening to your story somehow made me feel not so alone. All I can say is thank you. Thank you for telling your story and putting your life out there for the world to see.”
It took me a minute, I had to reread it to be honest with you. Because if you're not familiar with our story, my son, Benny, was diagnosed right before he turned two his older sister had just turned five. So it's a very similar story. I mean, they have used to live in Charlotte. It was just this feeling of kinship. Yep, I'm not sure I we're still talking. I'm kind of working out the emotions, because it is kind of like looking at a time machine. And I'm so grateful for the people that were there for us when Benny was diagnosed, and the blogs I read and the people that I talked to. So to be that for somebody else now is really remarkable. So Casey, thank you so much for reaching out. Definitely. Let's keep in touch, our Benny's. Maybe we'll meet at some point, how much fun would that be? I mean, we go to Charleston every summer. That's where we go to the beach. So I'm really hoping to follow up on this because man, those connections are really what it's all about. For me, it sounds really hokey, but if you've listened to the show for any length of time or met me, I think you'll say that that's the truth.
Alright, so DiabetesWise coming up in just a moment. But first, Diabetes Connections is brought to you by One Drop and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the slickest looking at most modern meter My family has ever used. It's not just about the modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to diabetes, connections dot com and click on the One Drop logo.
My guests this week are Korey hood PhD professor of pediatrics and of Psychiatry and Behavioral Sciences at the Stanford School of Medicine. We did a great episode a while back about the mental burden of wearing devices. With Korey It was really eye opening for me and I will link that up on the episode homepage. And we're also talking to Laura Kester T1D program officer at the Helmsley trust. I should note, we taped this interview a few weeks ago. So when they Talk about things added to the website. Some are already there. And starting this year, all of our episodes are transcribed on the homepage. Have you checked that out, you can go right to the episode homepage on diabetes, connections. com, scroll down just a little bit. And the whole episode transcript is there so you can read the episode, if you prefer. love to know if you're doing that. So let me know what you think. Here is my interview with Korey and Laurel. And I start out by asking Korey, what is DiabetesWise?
Korey Hood 6:30
Well, thanks again, Stacey for having us on. And we're always happy to talk about diabetes life. So this is a website that we collaboratively worked on. So I'm a psychologist and clinical researcher and one of the things that we've noticed in practice and and also in research is that people are not always aware of the different device options they have and I'm not always aware of the different technologies available to them for managing Diabetes. And so we wanted to create a resource that was unattached to device manufacturers to companies that hopefully is unbiased and and can be free and people can go there and compare different devices and understand a little bit about what other people who are using those devices have, you know, thoughts on it. And so, we've been doing some collaborative work with the Helmsley Charitable Trust for four or five years on understanding some of these device and psychological factors related to device use. And so we have support from them and have been working on this for much of the past year and a half.
Stacey Simms 7:45
Laurel, let me ask you, I remember years ago now, looking for the insulin pump for my son who was two at the time and it just seemed overwhelming what was out there. I had no idea how to make a decision. What would I find at DiabetesWise how would this have helped me?
Laurel Koester 8:03
Sure. So one thing I think is really critical about DiabetesWise and makes what makes it so different from what's out there is the use of personal stories from real people living with diabetes. So, you know, our ultimate goal at the trust is to help people be aware of all their technology options that are out there, and kind of get the inside story and real talk from other living with type one about their experiences, trying, maybe stopping, maybe trying, again, different types of technology. And we found through some market research that we've done is people really you know, they're kind of two groups of people. There's a group of people that you really trust their doctor above everyone else. Then there's other folks that really look to online information sources. Know, like a DiabetesWise, like beyond type one. But there was nothing really focused specifically on technology. And what is really great about DiabetesWise is that it has a short questionnaire at the beginning that basically serves as an algorithm to help see where people are when they come into the site, and then provide suggestions on what device is right for them through the use of the personal story.
Stacey Simms 9:40
And we're like, I definitely want to talk more about the homestay trust and why it got involved here. I mean, so much for people with diabetes, but Korey, okay, so you've and I've talked before about the mental load people with diabetes carry when we carry when one of these devices is attached. Right and how we kind of don't think about that. I mean, it never occurred. occurred to me when he was two and a half we put the Animas 2020 on him, it never occurred to me to think well, What's this doing mentally to my child? You know, as a teen, it's kind of easier to see. But can you talk about that a little bit about how it's beyond? I mean, they all work really well. There's not a bad insulin pump out there.
Korey Hood 10:19
Yeah, absolutely. I think that, and what you just mentioned, I think is a great a great example of why we have to think about this at different stages. And, you know, for somebody who's, like your son diagnosed the two, and then the family is adjusting and I mean, the burden around the mental burden around diabetes management at that point, even devices are not as really on the parent and so the it's really just a physical side that's on the child, but as they develop and then you know, as you know, many of the people with diabetes using these devices are adults that there's a I think there's a couple different parts of Did that sit in the psychological impact and one of them that we noticed a lot, especially in the teen years, there is the social side. And so what kind of attention is drawn to the person based on wearing these devices and having alerts, alarms, having, you know, disruptions and various things that they're doing. And so I think that the there's the physical side to wearing it, then there's this mental burden that is, is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is, you know, the distractions and the potential workaround, so you have to come up with in in these various settings, whether it's school work, family relationships. And so I think that there's a, there's a lot to think about, that we often I think, especially in the clinical care side, we forget that as soon as people leave the clinic, this is what they deal with.
Stacey Simms 11:56
Just this quiz, well this take me through which pumps beeps Am I going to actually listen to which CGM sensor alarm? Well I respond to I mean, I'm kind of joking. But you know, alarm fatigue and things like that. Are things that really happen. Are those kinds of things taken into account when you're trying to figure out what to choose?
Korey Hood 12:17
Oh, absolutely. I think that you know, one of the things that we wanted to do, and I think that this is best illustrated with our CGM comparison tool, which we did a lot of collaborative work with Laurel and her team to make sure that we got it right. And one of the things that we have there, you know, people can compare the sensors compare the different devices on whether or not it provides, you know, you have to do calibrations, you have to do finger six, but you also know the kind of alerts whether they're customizable or not. Because, I mean, as you know, as you just stated in all the user testing that we did, that is a big concern for People are these alarms and alerts and and what are the ways that we can at least notify people of them and what it's going to be like that also, in our, in our stories, people talk about that. And they talk about it being disruptive at different times and some of the little tricks that they found to actually help those situations. And so we try to, you know, it's just, you know, essentially just real talk about what it's like to use these different devices.
Stacey Simms 13:27
Also, Korey mentioned your team and some of the research that you did you had done. Can you talk about that a little bit?
Laurel Koester 13:33
Yes, absolutely. So I think just want to take a step back is, you know, we know the technology works, but how do we get more people to be aware of them, and not only aware, but to then use them and found them. And so we know that there are a lot of different factors that kind of play into the space around technology adoption, you know, there's a lot of barriers, but also facilitators out there. And so we really wanted to hone in on, you know, we know their system level barriers, like insurance coverage. So our idea was, let's go directly to people living with diabetes and, you know, just understand their awareness around different technologies. And some of the market research we did was specific to CGM, but we thought, hey, if there are the system level barriers, and we also know that, you know, maybe not all providers actually know about these diabetes technology, you know, especially if you're talking about primary care providers. And, you know, given the number of people living with Type One Diabetes, but also type two in the number of endocrinologist in the US there’s just not enough to meet demand. There are a lot of people that are seeing in the primary care sphere. primary care providers just, you know, don't have the bandwidth. So some of the market research we did was to, you know, we wanted to learn about information sources that people trusted. And the the two main points that I alluded to earlier was, there was a group of people that really trust a variety of information sources, ranging from their doctor to diabetes bloggers, to online community groups, and then there's another group that overwhelmingly trust their doctor. So for us, this told us that we need different approaches to raising awareness about diabetes technologies, one being through patient facing resources, like diabetes lives, but I think part of our larger vision is to also we understand now from this research that we also need to involve healthcare provider. Ultimately, the truck vision is to increase the use of diabetes technologies for people living with diabetes and others who are on intensive insulin therapy because it really is a an effective tool to help improve management.
Stacey Simms 16:22
Cory I'm curious as somebody who lives with type one, and I assume I shouldn't assume, but I was gonna say I assume who wears devices? Do you use a CGM or a pump?
Korey Hood 16:33
I do. Okay, yeah. So you probably too many of them.
Stacey Simms 16:36
Wait a minute. So tell us how many are you wearing at the moment?
Korey Hood 16:40
Oh, no, I'm just, I'm just exaggerating. I've tried I think everything that's on there.
Stacey Simms 16:45
That leads to my question, which is, do you mind sharing separate from DiabetesWise? How did you choose? And you can mention brand names if you want to, but I'm curious how you go about before there was a resources like resource like this. How you You went about choosing what devices you would at least try and then wound up with?
Korey Hood 17:05
Yeah, I think it's a great question. And I think it's something that
there's there's probably a few themes about how everybody arrives at this place about devices. And I'll tell you mine, but I think that it's there are not that many different routes to people getting on devices. And so for me, I mean, I it was fairly straightforward. This is when you know, back in, this was 10 years plus now when the first CGM came out on the market, and my insurance would pay for it, that was what made me kind of intrigued about it. You know, I heard a I was I've been working in the diabetes space, so I knew that it was coming and and so I wanted to try it because I could, but if I had to pay for that out of pocket, I probably wouldn't have paid for it. I probably wouldn't have done it at that time. So it was it was accessible to me, which was, you know, an important part. And then also, you know, I was
I liked the idea of something that gave me a continuous, you know, feed of what was going on with my glucose because I knew from finger sticks and we still know most people are still using finger sticks that there's you miss a lot of the peaks and valleys with those kind of intermittent glucose readings and so for me that was appealing because then I could maybe catch a low I could. And so I just for the management purpose, I think that I was really drawn to it from the pump side. You know, I've been, you know, you've mentioned the Animas earlier and, and I that was my first pump and I use it for a long time and I still have it in my you know, diabetes Museum of devices at home. But I I, for that it was it was just because of provider said you should try this. I didn't know really a lot about it. You know, I was 1819 years ago and I thought you know, I'll try this and and so I think what I can tell you though now I currently use the Omnipod with the Dexcom g six within the loop system. And so my movement to the occupied was was just because it was working with that system and I was I wanted to give it a try to have to blitz and, and for me and my lifestyle and my you know, when I do physical activity, it's just so much better and so so they do have too long of an answer to your question, but I think it's evolved over time about why I've used devices and I've been drawn to ones more recently that are smaller that don't have to be in and that that make it a little bit easier to do the things I like to do you know, outside of work and family.
Stacey Simms 19:59
Our experience was, was not exactly similar and choosing an insulin pump in that we were given a lot of choices. And at the time, back in 2006, there were actually more pumps on the market, which is kind of sad to think about. And we chose the Animas 2020. Because I felt like of all of the devices that I was shown, it kind of seemed the easiest. I said to my educator, I really said, I need devices, including pump insets. And everything else. I need the the Venn diagram of idiot proof, and does really good does what it's supposed to do with diabetes, because I really was so overwhelmed. And that's what we wound up with. And as Benny got older, and you know, every four years you're changing and making decisions. We stayed with a two pump. We now use the tandem. One of the reasons we stayed with it is because my son is very responsible, great kid does well loses everything. And we felt the Omnipod PDM would be gone in about 30 seconds, but I'm curious. So when you go through the quiz Your pump and sensor and that kind of thing. What kind of questions are you asking? I mean, I should have taken the quiz before I talked to you, sorry. But I'm wondering like, do you want everything attached to your body? So you don't lose it? If that's one of your questions, or if that's, and I'm laughing, but you know, you understand I'm saying that's one of the No, absolutely, yeah, form factor or your lifestyle factor?
Korey Hood 21:22
Absolutely. And I think you raised a really good point about that. The systems that that work well, and are easy to use, have been designed with the person in mind. They've been designed to be, you know, to have the form factor, like you mentioned, but the user experience is something that is positive. And I don't think that all of them are designed and created equally, in that in that sphere. And so I think that, this really great examples of that, and I would say that the tandem is one of those that has You know, and using use an interface that especially for anybody who's been diagnosed in the last few years, you know, that's that's what they're used to in terms of touchscreen. And so with that said, it's a good question about the quiz and one of the things that we did just quickly give you a little bit of history of it. So, in our we did a lot of work serving over 1500 adults with type one 700 adolescents, 700 parents of kids with with type one, to really understand what are the main questions that we need to ask people so that we can put them on the right path toward, you know, an experience where they become more aware about devices and then also maybe matches better to what their lifestyle is. And so we were able to take hundreds of questions and and derive a quiz that have five questions in it. And a part of those questions is about the level of distress and burden that they perceive about that. BTS because we found that that's a really critical factor in making sure that people get the right kind of information about using devices. But we also ask them what their priorities are, what are their concerns? And what are their main ones. And although we don't specifically phrase it, the way that you mentioned, it is that we, we get it, we get at a number of different priorities that people have. And then that starts them on this path. And then because of the way that it's framed, and as Laurel said, around the algorithm, that it will then take people to, based on their responses that will take them to individual stories of others who have those same concerns or same priorities. But then when it one of the parts that's not live on the website, yet, is a device readiness tour device Finder. And so in there, you can drill down a lot more deeply about what your priorities are, and so For example, if someone really wants it to be discreet, if someone wants it really ease of use ease of use as one of the ones that we have in there as a priority, if someone really wants to avoid fingerstick there's all of this that you can tailor the advice or the recommendations that you're going to get based on what your priorities are. So that's great for people who have some idea of what it is, but it's also great for people who are just trying to get a sense of I'm not even sure what my priority is. I'm not even sure what I want out of this so you can learn about it as well in the process.
Stacey Simms 24:34
Alright, so I'm looking at the website, and I know that as you said, more is coming. But it does say there's stuff about pump and smart pump. There were only three pumps in the US as far as I know right now. Which ones are the smart pumps? to dump I'm sorry.
Korey Hood 24:50
Right? Exactly. I there was something funny there that I couldn't quite come up with but I do agree with you that it what we found and said this is Why is it so important to ask people and involve them in in user testing and development? One of the things we found were that people really wanted to distinguish between something you just put on your body that administers insulin that doesn't make doesn't have any kind of alteration or it doesn't change what it's doing based on anything else. And so, you program a pump and they're, they're, you know, they're sophisticated for, say, 1995. They haven't evolved a lot. But they, they still do a great job and are reliable and precise. With what's what we wanted to distinguish is this idea that a pumpkin do something like low low glucose suspend or can be part of a larger closed loop system. And so the smart pump idea really came from what we heard from people and although it's not a, you know, an FDA category of devices, we really heard from people that they wanted to that distinguish between kind of the traditional way that you would pump versus something that has the capability to be within a closed system or to have low glucose suspend. So that was really the distinction there.
Stacey Simms 26:11
Got it. So in other words, if you use an Omnipod on its own, that's a pump. But if you use an Omnipod as part of the non FDA approved loop with a Riley link, now you have a smart pump.
Unknown Speaker 26:26
Exactly. Okay.
Unknown Speaker 26:27
Let me ask you. We talked
Stacey Simms 26:29
about this at the very beginning that one of the things that makes DiabetesWise unique and very, very helpful is that it is not put out by a company with a stake in what device people
Unknown Speaker 26:41
choose. The
Stacey Simms 26:44
Helmsley charitable trust I think many people are familiar with is so much of what it has done for diabetes research and funding and grants. And we've talked to some folks from the homestay family on the show in the past. What was the purpose here? You know why did Helmsley want to get into involved, it seems really obvious, because you're helping people. But I just wanted to ask you about the involvement here.
Laurel Koester 27:08
Yeah, absolutely. Well, I think they see the point that you raised about the the fact that we are an independent entity really speaks to kind of the trust factor not only in you know, what Helmsley because we don't have a financial stake in this. But we're also partnering with some of the leading diabetes researchers in the field at Stanford University. So we really want to ensure that that we're supporting information that is unbranded and unbiased and that people can trust. And I think, again, to underscore that this website is really informed by People living with diabetes is their voices. And, you know, for example, one of the tools that Korey mentioned of this device readiness tool, some of the research that's going into that is, you know, from a sample of people with diabetes, so when people see, you know, different priorities and, you know, writing, as you know, kind of just a sneak peek into some of the features that are going to be coming out, those are actually based on input from people living with diabetes, who are using diabetes was for the first time so it's a really unfiltered real deal.
Stacey Simms 28:44
Cory, what's your hope for this? Do you do you hope that like a CDE would say, hey, let's sit down together go through the quiz on DiabetesWise, or is it a question of people just kind of seeking a little bit more, or even people. What I find fantastic about this is that you have empty I'm on here as well, you're not assuming everybody wants an insulin pump, some curious what your hope is going forward?
Korey Hood 29:07
It's a great question. And I think that the ultimately what we want to do is we want to be able to match the device with the person and their lifestyle and their interests and their priorities. And, and I think one way to do that is that we traditionally don't do a lot of in clinical care is to spend more time objectively figuring out what's what's going to be the best fit, because clinics are busy, providers are busy, it's hard to get that dialed down really closely. And so my goal really is to get the right one for the person and so it's not a one size fits all approach. And if people are using multiple daily injections, and using a meter, you know, I could argue most of the time that you know, add a CGM add dilib re add something that will give you a little bit more glucose information to dial it in. So there's Maybe a little bit of room, but if you don't want to move, and you are really happy with it, then maybe there's some other some areas of distress related to diabetes that we've learned about in this process that we can help you with. And so, you know, I, it's, it's really intended to be a resource that can match and fit with anybody's interested in what they want to do around devices. But also, you know, at a minimum, you know, it educates the person about it, it also can be a resource that like you said, CDs could use one of the things that we found really helpful is we went to a D over the summer and in August and Houston and one of the things that we learned and, and talk a lot about with CDs was, you know, how this could be a helpful tool for them. And so that's another thing that's in process is making sure that we have something that is that can be used by them in a in a helpful way so that they can also get people on the right devices. I mean, I think that everybody If you get the right device on somebody, and they use it effectively, everybody, when there's less time and involved in on the clinical side, they're better outcomes. The person's happier. I think that there's just so many reasons that we want to do this. And then the other vision for this is that we keep it completely free, that we keep it disconnected from are not connected, not tethered to any kind of device manufacturers, we need them, they have to be part of this. And they're doing great work. But we don't want to be as Laurel said, we're not you know, we don't want to be biased or branded in any way we want it to be free and an objective tool for people to use.
Stacey Simms 31:43
I'm curious, what do you mean by you need them for this?
Korey Hood 31:48
Well, I mean, I think that we don't necessarily, we don't necessarily need them for DiabetesWise, although, I mean, you could argue that, you know, we wouldn't have DiabetesWise if we didn't have devices, but that's Maybe getting a little
Stacey Simms 32:02
device.
Korey Hood 32:04
Right, exactly. But But I think what I think I'm just noting that we need for I think the person with diabetes, to have the best chance of the best outcomes we need device companies who are pushing the edge and who, who are, you know, are the competition is a healthy competition. And so I think it's good that they all exist and that they do the work. We just don't want them. We don't want people with diabetes to feel like they have to go to a certain device. And so that's why we we created this so that they could have a more
you know, unbiased view of what's available.
Stacey Simms 32:47
I just didn't want to make sure I just wanted to make sure I didn't misunderstand there that you didn't need them. In other words to give permission to recommend or that they had to somehow sign off on DiabetesWise.
Korey Hood 32:58
Right, right. Okay. There we go. We, you know, if if we want to, we want to work with them on this and make sure that we have accurate information. But ultimately, this is driven by us and our team and our collaborations. And so if there's something on there, that isn't that they don't like then or a story that someone bashes their device, and it's still going to be on the website. But it's also that we we appreciate that they've done a lot of work to bring us to this place where we can actually have these discussions and we can actually have options.
Stacey Simms 33:35
Yeah, it's interesting. I mean, I mentioned when Benny was diagnosed, there were more pumps on the market. And while there are fewer now at least the technology is improving. Before I let you go, Cory, could you speak just for a moment about where it's been for you? And you know, where you are looking for to go in the next couple of years?
Korey Hood 33:54
Yeah, you know, I think that I mean, I've been it's a little bit of background I've been using For over, I think two and a half years now and, and I've found a great deal of benefit from it mainly on glucose control, but also in on the mental side and having longer chunks of time throughout the day where I don't think about diabetes, which is really nice. So I, for me, I've been really happy with the progression, it's not perfect, and there are still pieces, you know, multiple pieces you have to wear, we still have to, you know, stab ourselves with sharp pieces of metal. So there are a lot of these things that aren't going to go away and I don't think are going to go away anytime soon. But I do think that the ability to put something on and to not pay much attention to it for a few days is we're close to that. And I think that that's what is really appealing. For me and I think for others that we talked to is that if we do Just continue to decrease the amount of time that people have to think about it, and they feel safe, and feel like it's reliable. And that's really what we're aiming for. And I really do think that that's where we're moving in the next few years.
Stacey Simms 35:12
Laura, let me give you kind of the last word here, you know, what are your hopes for DiabetesWise and how it helps people
Laurel Koester 35:19
just positing said, That's quite a big question. You know, I hope. I think from the homepage standpoint, we want to make the information about diabetes devices and technology is available to everyone living with diabetes, you know, no matter where they live in the US, you know, um, you know, a lot of times just information isn't accessible for people and we want to make sure it's a trusted source of information. And you know, if someone lives in rural America, for example, and they don't have access to support CT groups or an endocrinologist that they can still connect with people like them to learn about the different technologies and devices and experiences of people that are navigating there. They're the same disease.
Stacey Simms 36:18
I'm thrilled that this is available. I really wish it was around when we were choosing our devices, because it was a little bit like throwing darts at a dartboard. Luckily it worked out. Okay. But Korey and Laurel, thank you so much for joining me. I really appreciate your time.
Unknown Speaker 36:38
You're listening to Diabetes Connections with Stacey Sims.
Stacey Simms 36:44
More info about DiabetesWise on the episode homepage and of course, the link is there to go ahead and take the quiz and tool around on their site and see what you think. Up next. What Marco Polo has to do with type one that's in our Tell me something good, but first Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That is the wonderful thing about share and follow. As a caregiver, a parent a spouse, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow up is required. You can learn more just go to diabetes, connections dot com and click on the Dexcom logo.
It is time for Tell me something good. And this one made me smile when I read it. Oh my goodness. So Rachel shared a story: “We were at Target today and my son's low alert on Dexcom went off and we heard in the distance, ‘T1 I hear you – Marco’ my boy lit up. ‘Yes, you do T1 – Polo!’ and another kid pops up out of breath. And the two of them just chat for a few minutes about Legos or with with everything in common. I melted.”
So how about that? I mean, we've heard some Dexcom alerts or seen somebody checking their blood sugar. And of course, I want to run over. And how are you and what are you doing here? But I don't I try to contain myself. But every once in a while, I'll say something. But I can honestly say it has never occurred to me to yell Marco, and hope to hear back a Polo. Dexcom alert. So kudos to these kids. And Rachel, thanks for letting us know about it. any follow up? You have we would love to find out. I mean, I can see her son doing this again, and maybe they became friends. I don't know. But I thought it was a really cute story. And if you try it, and it works, let me know.
I think the closest we ever came was interestingly enough at a hotel pool speaking of Marco Polo, this years ago, we took a road trip to Chicago. That's a story in and of itself. We took an RV from Charlotte to Chicago. And we did six states and five days to go see Syracuse play in the NCAA Tournament. Anyway, long story short, we did not bring the RV actually into Chicago, it would have been very expensive to do that. So rather than you know, pay a lot and find a place to park it, we parked our RV at my husband's friend's funeral home in Skokie, outside of the city, but that's not what I wanted to tell you about. Um, so we're at the hotel pool. And we look over and there's a little girl with the Dexcom and Omnipod on the backs of her arms. And of course, Benny at that age, was willing to go say hi, be social. So he did and we struck up a whole conversation and they were so nice. It was a lot of fun. Sometimes those diabetes spottings in the wild, really give you more than you'd expect. There. Just something so rewarding and so affirming about knowing you're not the only one, I think as much for parents as for the kids, and someday I'll tell you more about our crazy road trips, we're on a quest as a family to try to hit all 50 states and the kids were so excited about this when they were younger, I think we're on 27 or 28, I'd have to check. And I think I'm the only one who's still excited about trying to do it has to be all four of us together, you have to have feet on the ground, airports do not count. And so feet on the ground, you can't drive through either you have to actually get out and stop and take a picture. You need picture evidence. You don't have to have all four faces in the photo because sometimes people are grumpy and don't want to take pictures. But we need all four of us. So we have one or two pictures where everybody's holding up a cup of coffee or hot chocolate. That one was like at 6am in Ohio on that road trip. I have another one in Las Vegas where we're all holding up gelato, and you can't see our faces. So I'm hoping this summer not to get completely off track to go to New England with the kids because we've got a lot estates a hit up there. Anyway, if you have a Tell me something good story can be a road trip or anything of the kind, whatever works for you. You can send it to me Stacy at Diabetes Connections. com or post it in the Facebook group Diabetes Connections to the group or send it to me on social media, it'll find its way to me, just tell me something good.
Keeping that busy schedule, which I'm actually having so much fun with. I'm going to Raleigh, North Carolina for the JDRF type one nation summit this weekend, doing not only the world's worst diabetes mom presentation, but also my favorite one about making connections in real life Diabetes Connections. I have been doing this talk since before the podcast came about. That's where the podcast got its name. And I'm also talking about social media. So I'm really excited to meet some new people right here in my state. And then in two weeks, I'll be in Maine, for an event in South Portland, Maine dizzy calendar as I head out on the world's worst diabetes. Mom book tour. And if you've got an event later in the year, things are still pretty busy. Definitely through April. But after that, it slows down to about one event a month right now. So if you've got a jdrf summit, if you've got another event, especially in the fall, please let me know. So we can plan for it. I would love to come and meet you. I can do those presentations. We can do a live podcast, we can just hang out and talk. It's always fun to meet new people. And I do love making those in real life connections.
All right, coming up later this week, another mini episode, where I'm taking on what I think is a pretty controversial topic. In fact, when I posted about this on my personal page recently, I was shocked at the response I got. I'm going to be talking about why I think it really is a bad idea to post pictures of your child in the hospital. Yeah, I know a lot of people do this, but it's just not good. So I'll be talking about that coming up on Thursday. In the meantime, thank you as always to my editor john ducatis. audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday.
Unknown Speaker 43:12
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Using a shot of long-acting insulin along with an insulin pump sounds like a weird idea. But Stacey found when her son's insulin needs went way up around age 11, that it worked incredibly well for them. She explains the method of untethered, which is also sometimes called POLI (Pumping On Long-Acting Insulin), what led them to believe it would work, and why you don't always need to use a ton of insulin to benefit from it.
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Episode transcription (rough transcript, please excuse any grammar, spelling, punctuation errors)
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom, Real life stories of parenting a child with Type One Diabetes available as a paperback eBook and audio book. Learn more at diabetes connections.com
Announcer 0:21
this is diabetes connections with Stacey Simms.
Stacey Simms 0:27
Welcome to an episode of diabetes connections. I'm your host, Stacey Simms, and this is one of the new episodes I've added for this year. Where in addition to the weekly interview shows that are longer. I have started doing these shorter mini episodes where it's just me talking about one topic, hope you're enjoying them. It's been really fun to get the reactions and hear what people want to hear more about. So if you're brand new, just real quick. My son was diagnosed right before he turned two back in 2006 he is now 15 and a freshman in high school taller than me, and recently got his permit to drive like North Carolina. And our young, young permitted drivers are graduated licensing. But that's not what we're talking about today. Just to give you context on how old he is, and you know where we've been, he was diagnosed 13 years ago.
couple of episodes back. I mentioned Tresiba. I was actually talking about a Tell me something good segment on the show, which we do every week. Um, a family was sharing their last night of Lantus because their daughter was going out of pump, and Lantus really burns. So I was talking about Tresiba, which is another newer, long acting insulin as an alternative. And I had a couple of people asked me about that, one through email and a couple online. Don't you use Tresiba, they said, as an untethered method for Benny, and I thought this would be a really good chance to answer that question and talk a little bit more about what's called untethered or POLI. They both kind of mean the same thing. They're a little bit different, but we'll go through them.
I will start out by saying, once again, I am not a medical professional. All of the information I'm giving you here is through my personal experience as a parent of a child with Type One Diabetes. I am not a healthcare provider, please call your endo or your care team to follow up and ask them any questions especially about a topic like this one. But this is the kind of topic I love sharing about because the only reason we tried untethered, which changed my son's life and has just been amazing. Over the last. It's been more than a year now. We started in September of 2018. So the only reason we started it is because another diabetes mom reached out and said, Hey, have you thought about trying this? So Cheryl, thank you very much. I'm just trying to pass along the information here.
So what are we talking about? Well untethered means making use of an insulin pump. pump and taking long acting insulin at the same time, a lot of people use untethered to mean that they only use the pump for boluses. So in other words, all of the basal would be coming from the long acting shot. That's why another term has cropped up which is POLI pumping while on long acting insulin. And that is supposed to mean where you do something a little bit more flexible 50% of Basal from the pump 50% from the long acting, and all of the boluses from the insulin pump, and that's actually what we do, but I still call it untethered. So for the purposes of this podcast untethered is going to refer to any use of an insulin pump with long acting insulin, whether you're doing 20%, long acting 100%, long acting Basal, that sort of thing, just for conversational purposes. I think untethered is an easier way to go. I have been criticized online For calling it untethered, because I guess technically it's not correct, but you know me that has never stopped me before.
Alright, so why would you use it? Right? What this is my question, why would you go through all of the bother that is an insulin pump, right? inserting the inset every three days wearing the pump itself, you know if you've got little kids wearing it in the pouch, or if you've got the Omnipod schlepping the PDM around, you know, why would you do all that and then add a shot of long acting? Well, in my case, I couldn't imagine it until Benny became a teenager because what happened was his insulin needs went up so quickly and went up to numbers I never thought we would see. I didn't know people could take that much insulin and be ok.
And in our case, and this is a layperson opinion, but I stand by it. I think the insets get overloaded. You know when your basal rate is 40 50, 60 or more units a day. Those insets just They don't seem to be able to keep up. We had so many leaks. We had so many issues. And we tried everything. We rotated sites. We tried a longer needle. We tried every two days every one and a half days. But you know, I turned around the insulin would be like leaking down this kid's stomach. And we knew that it just wasn't working. Something wasn't going right. Plus, he has the Tandem tslim X2 which holds 300 units, we had switched from Animas which held 200. I mean, no pump holds exactly about that. It says it was always a little bit less because you have to prime it and blah, blah, blah, if you use a pump, you understand. But with that 300 units, he was still changing out his cartridge so much more often than before. And I knew that something had to give.
And then Cheryl reached out online and said, Hey, I really think you might want to try this. It really might help. So we talked to our endo about it. He recommended Tresiba which was also what Cheryl had recommended which is a newer long acting. And I always laugh because when I talk about Tresiba, I feel like I'm talking about whiskey Right, it's smooth. There's no burn. It's steady. It just doesn't sound like you're talking about insulin. But all those things are true. And it just lasts longer in the body than Lantus or Levimr. And that works really well. For some people, it doesn't work as well. For others. Of course, your diabetes may vary as always. But what's nice about Tresiba is once you hit the steady state, once you've been taking it for three to five days, there's a little bit more flexibility in when you have to take it. In other words, if you take Lantus every day at seven o'clock at night, you really have to take it at seven o'clock at night. There's there's not a lot of wiggle room with it. But of course, it's always better to take it at the same time. But with Tresiba you can miss that dose. We have missed the dose by several hours. And it really has been okay. It just works a little differently in the body and I'll link up more information as to why it's a different makeup. It really does work differently in the body and it's been amazing for us.
So we worked with our endo and CDE to figure out the dosing, because we had to change it gradually over time to get to I believe we started out with 30% basal from Tresiba 70% from the pump, and we gradually moved it up. And now he's 50-50. It really took about three months to find the right dosing because we were hitting moving target, right, we went from 30 to 40 to 50%. And we were changing things all the time. But we saw changes right away. I mean, it was incredible. Once those basal rates in the pump came down, it seemed to work so much more efficiently. I really do believe it was the insets, but even if your insetts are working great, and your basal rate is like 20 a day, you know, if it's different and you're not a teenager, why would you want to try this?
Well, interestingly, the first people I ever heard of doing untethered, were adults. And the reason that they shared with me was, they just had a little bit of trouble, especially at first trusting the insulin pump. You know, think about it. If you've taking shots, your whole life with diabetes. And suddenly you're on an insulin pump. But you know, it's been 10 years or 20 years, it may be difficult to trust it, not just the technology, but you don't see the insulin going in, like you do with shots. So both adults said that they started with untethered, because it was kind of an emotional thing. They wanted to make sure that everything was working, they wanted to kind of ease into the pump. And then one person did that for a couple of months and one person stayed on it. And I have another friend who has really bad anxiety and she found herself worrying. Are my insets working? Do I have a bad cannula, is something's gonna go wrong while I'm sleeping. And her endocrinologist prescribed, untethered to help her with that anxiety and to help her feel better and to know that the insulin is indeed going in. And that's made a huge difference for her too. So there are a lot of reasons why you consider something like this.
But I think the most important thing is to know what's out there to know that this is something that you can do. You don't have to do it forever. You don't have to do it at all. But if you want to try it out, you talk to your endo. And you can do it for a couple of weeks, couple of months. Keep it or not, if it doesn't work for you, nothing ventured, nothing gained. And if it works, it could work amazingly well. Benny hit puberty and oh my gosh, I'm sorry, I don't wanna get too personal on him. But I do want to share this. He hit it like a rocket ship. I mean, it just happened so quickly. It was and he was younger than most kids. And his insulin needs went way up, his numbers went way up, because we really didn't understand what was going on. You know, we were doing everything we felt we were supposed to be doing. I was helping him at the time. So I know it wasn't a question of not bolusing. But whatever we did, you know, once you get high, it's so hard to come back down and that was happening all the time. And in my head I'm thinking, you know, is he eating when I don't know about it, is he not taking insulin, you know what's going on, and it was the basal rates, they just needed to be increased. And once we added Tresiba, and took the load off those insets, his A1C, all his numbers, his time in range, everything went back to pre puberty, even though his insulin needs have gone up, and his teenage hormones are obviously still there.
So he's 15. We just had an endo visit and things are finally beginning it looks like to come back down in terms of insulin use. So I don't know how long will stay on untethered and control IQ coming out is, you know, possibly going to change things for us. But he has said he wants to stay on untethered for at least a month into control IQ, and our endo and our CDE supports that and of course, I do too, so we shall see what happens. But if you're a parent of a teenager, and you're freaking out, because their numbers have started to get really high, and you think, oh, they sneaking food, are they not bolusing, but you know, that doesn't feel right. You just don't think that's really the case of what's happening with your kid and I don't want to talk about sneaking food that's those two words should not be used together. So let's just say eating food without bolusing. That's a different topic for another time for sure. But you You're not sure what's going on with your kid. Do not assume the worst is all I'm saying, do some basal testing, talk to your endo about basal needs. Because if like me, your kid was diagnosed at two. And the first basal rates you ever saw on a pump were 0.025 when they suddenly shoot above needing three full units every hour, it's easy to think this can't be happening. This isn't possible. But it is. And this is just one way to kind of help ease the pressure off the pump. If that's not working the way you and your endo think it should be. It's an alternative to think about that really, really helped us.
It is no fun to take a shot every day. I give Benny so much credit. Although now he rolls his eyes at me. I can't even say like, I'm so proud of you. And he's like, Mom, you're so lame. But you know what I mean, right? It's not me taking the shot. It's not you if you're a parent. So we really have to get our kids on board with this. I'm not above incentives. Try this for a month. You know, here's 25 bucks for Amazon, or whatever works in your family. But I think it's important to at least ask these questions rather than live day in and day out wondering, what are we doing wrong? Feeling like a failure. teen years are tough enough. And I know, you know, using Tresiba isn't gonna solve everything. But I talked to so many parents who just don't realize how high the insulin needs can get. I mean, look, a basal rate of four units an hour. sounds crazy, but it's not that uncommon, using 80 to 100 units a day of basal insulin. It sounds bananas. But for some people, that's what they need. And people who don't have diabetes, their pancreas is are just pushing this insulin out as teens. You have no idea how much insulin your kids’ friends without diabetes is making them his body. They need what they need. So talk to your care team about it. Talk to your kid about it. And if nobody thinks it's a good idea, just remember, I am the world's worst diabetes mom.
Oh, I will would be remiss before I go to not say, while I have sung the praises of Tresiba, like everything else in diabetes land, you're often at the mercy of your insurance company. We were very lucky to find that this was covered. But it is not always it is a much newer, long acting, so you may have to fight for it. definitely make sure your endo is willing to go to bat and help you appeal if need be. If this is something that you really feel strongly about, and they do, too. You don't have to use Tresiba as the long acting to go untethered, it's just what has worked for us, but unfortunately, it is so new that a lot of insurance companies do not cover it yet.
Alright, we are doing these minisodes every Thursday, and every Tuesday, we have our regular length interview shows where I talked to newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people just living with Type One Diabetes. Learn more at diabetes connections.com. You'll also find the episode homepage and links to a lot of what I spoke about here, including studies about untethered and a lot more information so head on over to the website, please be sure to join the Facebook group diabetes connections group. I'm Stacey Simms, and I'll see you back here next week. Until then, be kind to yourself.
Benny 14:19
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Tandem's Control-IQ system was approved by the US FDA in mid-December. In this episode, Stacey talks to Molly McElwey Malloy, Tandem's clinical outcomes manager with behavioral sciences.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Control-IQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).*
Check out Tandem's YouTube channel, featuring new videos about Control IQ
Join the Diabetes Connections Facebook Group!
This is our last episode of 2019! Stay tuned for new sponsors, new segments and new weekly mini-episodes.
Sign up for our newsletter here
To use Control-IQ, you must have the Tandem t:slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump.. it does not require a purchase of new hardware.. no new pump needed. You do need to have a prescription from you doctor.
If you are an in-warranty customer the Control IQ update s free. All software updates released through 2020 are free to in-warranty t:slim X2 users. It doesn’t matter when you choose to download the update. The no-cost is determined by our release date, not your download date.
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Episode transcription (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors)
(Time codes listed refer to times within the interview, which starts 5:30 into the episode)
Transcript:
This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes, available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Welcome to our last episode of 2019 and it's a big one all about Control IQ the new hybrid closed loop system from Tandem recently approved by the FDA. I'm talking with Molly McElwee Malloy from Tandem. And I'm going to try to keep this intro short. I know you all just want the information. But I do have a few housekeeping and other things to get to. You can always skip ahead if you wish, I will not be insulted.
But first while my regular podcast listeners insulted first when things like this happen when there is a Big news in the community. We get a lot of new listeners. So I want to go through some basics first. Hi, I'm your host, I'm Stacey Simms. My son was diagnosed 13 years ago, right before he turned two. He is now freshman in high school. He is 15. And boy, time has really flown. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting, local radio and TV news. And that is how you get the podcast. We are four and a half years into this podcast. We have more than 260 episodes. So I would encourage you to head on over to diabetes dash connections. com If you're brand new, scroll through. There's a very robust search feature. So if you want to type in Tandem and see what we've done over the years leading up to this release, or any other topic pertinent to diabetes, you can go ahead and do that it's very easy to search through. It's very easy to search through, and everything you'd want to know about the podcast, including how to subscribe for free on whatever app you want to use. Joining the Facebook group all about me, it's all there on the website.
Okay, let's talk about Control IQ. What is it? Control IQ technology is an advanced hybrid closed loop system. It is the software within the pump. It uses an algorithm to automatically adjust insulin in response to predicted glucose levels. So we're going to talk about that to help increase time in range. Time in range and the recommended target range is 70 to 180. And yes for the International listeners we have quite a few. This is a USA centric episode Control IQ is rolling out in the US. We will be staying up to date on when it is available in the rest of the world where Tandem is already in your marketplace. But this is a USA centric episode so when you hear us talking about numbers, that's the system that we're using.
For Control IQ you must have the Tandem t slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump. It does not require a purchase of new hardware, no new pump is needed. You do need to have a prescription from your doctor and you will hear more about that if you are an warranty customer, the Control IQ update will be free. All software updates released through the end of 2020 are free to in warranty t slim X to users. It doesn't matter when you choose to download the update. The no cost is determined by Tandems release date, not your download date as we're right at the beginning of 2020. That probably doesn't matter to most of you listening but I think it's important to point out.
Control IQ is FDA approved for those 14 and up. It is not a replacement for diabetes management. And it is not a cure. It is not a cure. There is so much information about this online already from Tandem. I will be linking up a lot of stuff on the episode web page. They have YouTube videos. There's so many features that we don't even get to in this interview. I mean, the tubing fill, you can now set that to vibrate so it doesn't beep when you fill the tubing and change the cartridge which I know Benny just so excited about but in this interview, we really just scratched the surface. So please know I will be doing follow ups and there's a lot of supplemental information on the website.
Quick note about Molly McElwee Malloy, who I'm talking to from Tandem, she was diagnosed 22 years ago this week as a young adult. And as you will hear, being in an artificial pancreas trial, changed her life. It changed her career path, everything. And she is one of many, many people who has been with this project for a very long time. We do spend the first four minutes of this interview on that subject on who Molly is and getting to this point. And if you're dying to get Control IQ info, again, go ahead and skip ahead. But I think her story is an important part of all of this and I think it sets up all the information very well.
One more thing. There will be a full transcription available for this interview. A lot of you have been asking for that. That's a new feature I'm making available for the podcast in 2020. So stay tuned on that for every episode, but this transcript will be right on that episode web page. The best way to read it go to diabetes dash connections. com scroll down and click on this interview to open it up. All right here is my interview with Tandems, Molly McElwee Malloy,
Stacey Simms 0:01
Molly, thank you so much for joining me. I can only imagine how busy you are and how full your inbox is.
Molly McElwee Malloy 0:08
It's a really exciting time. For sure. Absolutely. No doubt.
Stacey Simms 0:15
Well, congratulations. We're very excited. I mean, personally and professionally. I can't wait to talk to you about this. So let's just jump right in. I do have to ask you though, for people who may not be familiar, tell me a little bit about your background because Boy, you have been with this project. Really, I want to say almost since day one, tell me about your involvement with what has led to Control IQ for Tandem.
Molly McElwee Malloy 0:39
So I'm, I'm sort of what you would call like the obsessed fan who went rogue. So I, I was in an artificial pancreas prior in 2006. And full disclosure, because no surprise to anybody who knows me but I have a bit of OCD. And for me, that was manifesting is testing my blood sugar 30 times a day. Wow. And yeah, it was really out of Control. Or as most, you know, endocrinologist say, I was a perfect patient with zero Mental Health Quality, but life like it definitely was impacting my quality of life. But I participated in one of these trials. And it was, you know four IVs and somebody at your bedside for 32 hours and the whole nine yards, but for me, it was life changing that for a period of time, I could relax for the first time and just let somebody else take Control. And everything was fine. And I sort of just realized that deep breath at that time was exactly what I needed. And I and I was like, Well, I'm going to do whatever it takes to work on this project. So you know, at the time, I was a professional musician, which makes getting into science..
Stacey Simms 2:05
Be vert interesting,
Molly McElwee Malloy 2:06
Just a super, super easy transition (laughs). As logical obviously, as you've spent your life, being a musician that makes sense to just go into science. So I went back to school for nursing and continued to participate in trials through nursing school. And then when I graduated they hired me on at the Center for diabetes technology at the University of Virginia, which is where all of this magic was taking place. And I have not looked back. So they hired me in 2010 have been acquainted with the algorithms since 2006 as a patient, and here we are, it's almost 2020 it's 2019. And it's finally getting to market so I've done that and I worked with a startup called Type Zero technologies, which commercialized The algorithm licensed it the Tandem diabetes care. And then I jumped over to Tandem to pursue commercializing the algorithm. So, a little bit of like a dog with a bone, go and fill it out. But it was sort of my glimpse at sanity. Like, this is what sanity, this is what my life could look like with diabetes. If something was managing it in the background, I was really only worried about the big things. And I saw that and I was like, that is exactly what I will do. That's what I'm gonna be doing. I will do this all the time until it gets there. And it is. It's been a very long journey. very rewarding journey. Very difficult journey, but to be here today, wearing the device is magical.
Stacey Simms 3:54
Okay, I'm gonna stop you there. I could talk to you for a long time about the process. But as you listen, I know you want to get to Control IQ. So I will just say, I've talked to Molly a couple of times before and I will link up the other episodes because the background on this, as you mentioned, type zero, you know how Tandem came to have that software, the development of all this, it's really important. And it's really interesting to listen to. So I will link those episodes up. But let's talk about Control IQ, so many questions. What are the what are the first steps? What's going on right now.
Molly McElwee Malloy 4:27
So because of this all happening right around holidays, what we're doing with him doing kind of behind the scenes and, you know, as we speak up through the beginning, or first two weeks of January is we're educating the whole you know, diabetes educator and endo workforce, getting everybody up to date, getting everybody ready, making sure we're on the same page. So that when you go to your endocrinologist and say I want this you know that customer, they are well informed of what's going on. So all of that's been going on in the scenes like, you know, just earlier today I was on the phone with 10 different doctors trying to make sure that we all understood everything. So we're, we're educating as fast and as seriously as we can. We have an excellent online training program.
So you as a customer, if you are current X2 user base, like you are just x to the end user will get an email, and I believe it's the first the second week of January way of January 13. That week, you'll get an email saying, hey, go ahead and login, update your information, make sure everything correct when you get the prescription will, you know will we talk to your doctor and will help you if you're an existing customer with we have that information kind of fully loaded, ready to go. You could also log into the portal, the customer portal and you know, go ahead and start that process. I'm interested, I want this and talk to your doctor. That's all that's one place. It is super easy scripts with your doctor that gets loaded. It's an automatic process. Once we have that, if you've already got that, like a blanket prescription from your providers practice is already going with us and we're trying to initiate that next two weeks. That's already there, we will automatically check on the background and then it will, you know, provide us with going ahead and giving you the green light to issue the next email which will be your training is ready.
And then you will do the online training. And it will give you the ability to learn all about Control IQ. It's very interactive, you can't hit play and walk off. I know people do this on other training like I know we have webinars and we push play and we walk off we do the dishes when we come back. You cannot do that with this. It actually won’t advance to the next part until you've done x, y, z that is asked you to do. We've designed that for a reason so that you actually come away with the knowledge you need to operate the the algorithm and integrated into your life. So then you will answer a couple of questions and take a quiz. And you will have had to pay attention to get this information correct. And if you don't, you can go back and re learn until you do answer the questions correctly. Once you do pass the quiz and the module, you will then get the download code which is specific to your serial number of your pump.
So I know there's been some questions, people sharing about work arounds, can you share it? The answer is no, no. You can't share it. It is your learning and your code is specific to your serial number. So all of that lines up perfectly to allow you to download the software update. And that will be, you know, everything will walk, walk through all the steps and pretty obvious, but for those who think that this some idea that someone will get a code and then we could post it on the internet somewhere and share it like, sorry Debbie Downer you're gonna have to get this on your own. Like, we work smarter than that and the FDA is smarter than that, and they're not gonna allow one code to rule them all. Yeah, so everybody's gonna have to do this upon their own and because it requires a prescription you have to go through all this stuff.
Stacey Simms 8:37
When you mentioned training healthcare providers, and this might be a really dumb question, Molly, so forgive me, but is do they go through a more in depth training? It just seems like a couple of weeks to try to get all of these endocrinologists and CDs on board is a tall task. Do they all have to be trained before they can write the prescriptions and then what is their training like
Molly McElwee Malloy 8:59
this have to be trained before they can write the prescriptions we want them to be trained before, obviously, we'd like them to have knowledge before they write the prescription, but they don't, they need the training to be able to treat patients, right. And I want them to be we want them all to be informed before they write the prescription to know if this is a good choice for the patient. But you could always write the prescription and then the person doesn't do the update. Right. So there's, you know, there's, there's always a couple ways to be kept it at the end if they don't intend to write the prescription. But writing the prescription with knowledge is always excellent. And we want to be aware, it's really, you know, an hour and a half two hours of their time. It's not a whole day thing. I know with other systems, there's been some feedback about like the links of training being really long and and we took all that into consideration. You know, we got the beautiful gift of not having to go first. Right? So we got to see what happens with the market with feedback before we did it. And we implemented a training and the good news with Control IQ is, it's not difficult. You do have to understand some concepts and some differences. Right, but it's not hard.
Stacey Simms 10:27
I guess my concern was that people would be calling their health care providers and saying, Are you trained? Are you trained? Did you do this yet? Because you could see that happening.
Molly McElwee Malloy 10:35
Yeah, and the good news is that we're getting them trained. So and it's on there's an online module they can take to do this. Like it doesn't have to be me on the phone with somebody train them, although we are doing that for them for larger offices that need, you know, to have that interaction, but there is an online module that they can take to get trained. So we do have a provider but site that has been launched. We've been very patient centric and very patient forward and our website and our outreach, and we are adding new dimension to both Tandem and our website, and how we are looking at our business. So, you know, to be honest, when you do this business, there's, there's at least three customers you're looking at, right? There's a patient, there's the provider, and there's the payer, and all those things need to be addressed. And we've been very patient centric. And now we are and we are continuing that we're just expanding to be very have people that are actually focused on providers. And so there is a portion of our website now dedicated to health care providers, and their education and resources specific to them. So that is launched that is up and running, and it's actually a very elegant website a host of resources for healthcare provider.
Stacey Simms 12:10
Alright, so let's get to the moment at hand - Control IQ. How does it work? Talk to me a little bit about you know, the pump settings or what do we have to do you? What is the? What is the basis of Control iQ?
Molly McElwee Malloy 12:24
Yeah, so this is the beautiful thing and I love all things that are based in science reality and truth, right? Like, I don't like we and Tandem doesn’t like this either, but we don't like you know, don't let trick and we don't like you not be able to see what's going on. So the beautiful thing about Control like you would like about all of Tandem technology is that it stays in the science and the foundation that you know in love, which are pump settings that you already understand. So the traditional rules that healthcare providers have used and I can provide you a link to article that’s helpful on you know 15 and 1800 you know, rules that they've always used and you know, implement duration action that is built in on the foundation of many many many decades of science. So, the all of that I can provide you some links and educate people about that what does that mean but your traditional insulin to carb ratio, sensitivity factors and basal rates all still apply. We use that the Control IQ technology uses your pump foundations and your foundations order the basal rate into the carb ratio, correction factor to operate from right so those are specific to you, they always have them they always should be. And that is where we you know, we start the game of Control IQ technology. So Using those settings, Control IQ technology, what we making adjustments from your baseline parameter, so your baseline parameters are exceptionally informative of how Control it technology will work.
Stacey Simms 14:12
So we've been using a pump, let's say, you know, our personal case for 12 and a half years, we're pretty good at the settings. You know, we're going to talk about insulin on board because that's an interesting change. But we have our ratios and our, you know, our sensitivity factor. People like us, you know, a lot of people who are used to changing things on their own, you're basically saying we're not gonna have to learn to use the pump that we know so well.
Molly McElwee Malloy 14:38
Correct. Right. So all the settings that you know and love are great. And you will move forward with those right? Okay, people coming from other systems, like maybe different pump or multiple daily injections, things like that. You're going to want to establish some really good baseline settings and make sure that those are accurate. So you particularly, if you're coming, I could say you're coming from a competitor's product like that, that has automated insulin delivery, you want to make sure that those settings are good to go. Because the previous, you know, previous other things that you may have used, only altered on board and carb ratio, right. So if you're only pulling two levers, the other things may not be totally, you know, set in stone and based and in the reality that you need. So, moving forward, you will need to make sure that the patient has, you know, your patient which would be your son or myself, that user has the pump parameters and settings that are based in
in what you would want to use.
So somebody is moving from a different product. We just want to do a double check and there's going to be in the healthcare profession. We'll have a little checklist to go through and we'll ask them, you know, you're coming from a different product, please look at the baseline settings and make sure that they are perfect for the patient. In your situation, you're just going to be moving from you know, base like you to Control like you. And those settings will apply. I will say a note for your super super savvy listeners who have used Basal IQ. And something we've noticed just in real world data as we've looked at people who data people have up to their basal rate to allow for, you know, like you to go to be like suspend, resume, suspend, resume and kind of hug that line at 80. A lot of people have done that. And I want to talk to that community real quick and say, Look, I know what you did with Basal IQ with riding those basal rates high to hug that line at 80. I saw that we saw that. You did that. We know why you did that. Just look at them. One more time before Control IQ because Control IQ is going to be adding, right? It can add insulin. So just before you go on your merry way with Control IQ like you double check your baseline settings, are they where you want them to be before you go right knowing that a system can add insulin to it.
Stacey Simms 17:20
Okay, so you mentioned a lot of people, a lot of my listeners like to ride that 80.
Molly McElwee Malloy 17:27
Let's talk about people, man, a lot of people love that they want like, they want that super, super tight Control and I get it. I totally get it. But you got particular, you know, space of listeners needs to be open to the idea that we're now going to be adding insulin right? So if you've kind of made these aggressive pump settings with Basal IQ and now you're going to be just on your merry way. We don't want you to experience hypoglycemia, right? That, you know, we don't want to put anybody into hypoglycemia land. My personal least favorite experience of, of diabetes? Well, let's, let's not do that.
Stacey Simms 18:10
Right. But the question then is, what are the targets? I thought Control IQ wasn't really going to let you ride that 80. Can you talk a little bit about I mean, obviously, nothing's perfect hypoglycemia can happen hyperglycemia can happen, but what is it aiming for?
Molly McElwee Malloy 18:29
If your listeners can pull up the little chart, the patient pamphlets that I that I gave you, there's one of them that has a really good visual of what that looks like. And just so that we can go from soup to nuts, the person who has now downloaded Control IQ technology, all you have to do is turn it on. It’s either on or off. Just to preface all of this before we get into target and all of that. There's no kick out with Control IQ technology. Control IQ technology works, so long as we have CGM. And I will say that as long as we have a continuous stream of CGM, or we will continue processing that data. But if there are 20 minutes or more of missing data from that CGM and those who are very savvy with Dexcom know that you can kind of get internet readings occasionally. I'm not talking about reading, you've got a loss of CGM for more than 20 minutes, we're going to revert to your pump settings. And so we can get that until we can get that information back up and running. But if we miss a value or two when we come back, and we've got that information, we're running full steam ahead We're good to go. If we have any data point in that 20 minutes that pops up, you're still in. It are still in the game. They're still playing. But there's no kick out. Right?
Stacey Simms 20:14
So as you mentioned that, just to be clear, there's no auto mode or manual mode to kick out of. So if you lose the CGM signal for that period of time, as you said, What did you say 20 minutes.
Molly McElwee Malloy 20:26
It has to be greater than 20 minutes
Stacey Simms 20:28
if you lose CGM signal for 20 minutes, it just goes back to regular Tandem pump, all the settings are in it. When the signal comes back, it automatically starts Control IQ, you don't have to do anything else.
Molly McElwee Malloy 20:40
Correct. You could sleep through the whole process, right? You do you right. Like if we lose it, we'll we'll get it back as soon as possible. We're going to alert you that there’s no CGM available, right? Right. We're gonna alert you that this happening. But if you're sleeping or you're doing something else and you are not paying attention to it, we’re going to keep running with the ball in that process without having to like all these bells and whistles, and there's no modes, right? Control IQ is on or you can turn Control IQ off. There's no mode.
Stacey Simms 21:16
Alright, so let's talk targets.
Molly McElwee Malloy 21:19
Yes. So there are several targets, the one you will call the main target is the number 112.5 which in the pump, it's going to default to 110. Why because you don't have 112 point fie as an option. 112.5 for those who are interested is a weighted average between 80-120 with the least amount of hypoglycemic outcome. So if you're a statistician or mathematician and you love numbers you can a bunch of scenarios of hypoglycemia and when it will likely going to happen in all these different situations which is what did happen to come up with this number you would come up that 112.5 had the least amount of hypoglycemic outcomes in the greatest amount of time in range and you know successful euglycemia. Yeah, so 12.5 it is. And it will show up as 110 in the settings 110 will be the target. In the settings that you set up for Control IQ it is non-negotiable. We have different ranges for things that we're using throughout the way the system progresses, but as far as looks on the settings on the pump, is going to show up as 110.
Now when you enter the system, as long as you're in euglycemia land, like as long as you're in range and predicting range, which would be predicting 70 to 180, we’ll use your pump, right your pump study should be adequate. But the minute your predicted to be outside of the range. And this is where this graphic is really helpful. If you’re predicted to be 70, right, less than 70, we're going to start decreasing basal insulin. It's predicted when you start going below 112.5 right. And then when you get to 70, we're going to stop basal delivery. And this is during this time, right? So the during regular Controller to you, if you are predicted to be less than 70, you start going down less than 112.5 we're going to decrease basal, and we'll eventually halt basal. Now if you're above 112 point five and you're heading up, and you're predicted to be above 160, we're going to increase that insulin delivery and increase that in the background until you hit a prediction of 180 and that's not you hitting 180. That's the prediction heading 180. If the prediction hits 180 then we can give an automatic correction bolus once an hour during waking time and I'll go over more about what that means in a minute.
But predictions to be above 180 one at if there was, you know, not been another bolus in the last hour, we can give one at that point to try to keep blood sugar more in range. So the range 70-180 again, 112.5 is euglycemia. Going below that, you know, we start decreasing if you're predicting below the lower than 70 we're going to, you know, stop basal insulin delivery, you’re predicted to be above 160, we're going to be increasing basal insulin delivery of your predicted to be above 180. We're going to deliver an automatic correction bolus once an hour during the waking time. And by that I mean when you're not using exercise or sleep. There's three activities in Control IQ and they are Control IQ or what I call wake time. There's sleep and there's exercise. And those three things have three different targets. Because if you think about it, those three activities have very different applications for your blood glucose. So, waking time 70 to 180. That's sort of where we aim for all things during the day to accommodate for blood glucose fluctuations with meals and stress and schedules and everything like that. Sleep is something you program. So you can have just like you would program a basal rate. So if your basal rate normally changed from three to 4pm, every day… the sleep is, you can program that right. So mine is programmed for 10pm to 6am. So from 10pm to 6am I'm sleeping and it will automatically go into sleep, it will automatically come out of sleep. I don't have to do anything. And during sleep, we're going to target 112.5 to 120 which is a much tighter range, but we're not giving automatic correction boluses during sleep,
Stacey Simms 26:02
can you tell me a little bit about the thinking there? It seems obvious. But is it just because a person is sleeping and can’t adjust the pump? I'm trying to figure out the logic?
Molly McElwee Malloy 26:14
The logic of not having the autocorrection? So the logic around not having the autocorrection overnight is about being super conservative with the FDA and their comfort level . But also, the algorithm really drives a really tight range during that time because there's not a lot of interference, right? You think about sleep it's like for blood glucose is the easiest time to manage diabetes, right? because nothing's happening. Although you are asleep, so technically difficult because the operator is asleep, right but as far as what's happening with diabetes, sleep should be a pretty steady state. So if we can automate going into and out of and having a really timeframes for that period of time, then we can kind of optimize time in range by, you know, six hours a day being really tightly Controlled, or however long the sleep activity is. And we noticed in the in the clinical trial, those people who had a sleep schedule and not everybody did, and you do not have to set one. But those people who had a sleep schedule had significantly more time in range. So that's just something to notice. No, you don't have to set one right? Could you have automatic corrections going all night long and being awake, I'm sure you could do that. If that that's how your diabetes works. Great. My diabetes, your diabetes, somebody else's diabetes, they're all going to be different, right? We all have different versions of how we metabolize things and how we sleep and how we process and our activity and you know, sometimes, you know, the sky's blue and sometimes it's not and it just depends. That's life with diabetes, some things will work with some people, somethings won’t.
We did have in the clinical trial have some people we refer to as Sleeping Beauties who had sleep going 24 hours a day and and that would put you at the you know, like the 112.5 to 120 all the time, no automatic corrections but you would get basal increases and basal decreases to try to keep you in that range. And for some people, that's great. You know, that's where you want to live, that's fine. You will not get the automatic correction, you will need to give that correction when you need it. It's not going to be enough to accommodate that. But hey, if you're sleeping beauty and that works for you, that's fine.
Then there is exercise. Exercises is a button you press. You go into options you press exercise – start. I'm exercising now and then I will leave it on exercise and when I want to stop I will go in and I will stop exercise. And while I'm exercising will be a little Running Man on the side of the screen to show me that I am exercising. And that will tighten the reins to 140 to 160. To help prevent hypoglycemia, it also engages what we call the brakes or the prevention of hypoglycemia by 10x. So if you think of a car rolling down a hill, and if you think of getting your brakes tightened 10 X, the minute you start going downhill, you're going to stop, right? It's going to be like that, stop, it's gonna be really, really grippy. And that's the way it works doing exercise. We anticipate hypoglycemia. Now you can still get an automatic correction bolus, and you can still get an increase in basal during exercise because there are people who will go high during exercise. With the pediatric sports particularly, you notice a big difference between game day and practice day. Like game day there's a lot of adrenaline there's usually a lot higher blood sugars and practices it’s low blood sugars. So You know, this is why that's still going on in the background, starting in an hour before starting at the time of exercise, leaving it on an hour after all of that's going to vary depending upon the person and the activity and you're going to have to play with that and see what works for you. You know different strokes for different folks. And some people won’t need to put on the exercise right they'll be fine where they are. It just depends on what you're doing your body, your diabetes, what's going on. And as to when you start it and when you stop it or if you use it. Likewise, you know you could put exercise on 24 hours a day if you wanted to, if you needed to ride a little bit higher or you know were feeling very cautious about something you know, and you want it to be, driving all day or something you know, like I just want to be a little bit higher today
Stacey Simms 30:53
Your kids first sleep over
Molly McElwee Malloy 30:55
your kids first sleep over and you want that automatic bolus, they're going to snack. And, you know, if you think about it, like if I think about my kids there, they are active 24 hours a day until they crash, right? So if they're super, super active, and I'm getting, I'm getting frequent lows from that activity, I might put them in exercise all day, right? So depending on what's going on with that patient that time and what works for you, they'll be different. They'll be different reasons why different activities are better for some people than other people and when you want to use them, but they're all available to you to use as you want to because we all deserve choice, and we all should have Control over what happens with our diabetes.
Stacey Simms 31:43
It's really interesting. Okay, I'm trying to get through the list because I have I have 14 questions for everything you answer. So I know we'll talk again, but I do want to ask you about insulin on board and I will set this up by saying in the last few months, I've been reading up a lot on this in anticipation of what we're going to talk about here, because Benny's insulin on board, which is as you listen, you may not realize there's a setting in the pump, all pumps, where you try to figure out how long the insulin that you're giving is lasting, and this is with MDI as well, but the pump does it automatically - you have to tell it and then it keeps track. So we have always said Benny's at three hours. And then when he hit puberty, we kind of tightened it up. And I've learned that it really didn't matter what we said, or what we thought that everybody's insulin on board, studies show, is about five hours. And so that's what's in Control IQ?
Molly McElwee Malloy 32:40
Yeah, it's at five hours. So if you look at some data, and again, I can provide you with links to some published data on that, the data says it's between four and a half and six hours. So let's split the difference and call it five hours. So we're using five hours for several reasons. One it’s established data we can rely, on you can hang your hat on it. Also, it's a static number, right? So if you are, if you are trying to aim for targets with a multitude of patients, a multitude of patients and you're trying to automate an algorithm, you cannot then vary IOB without causing some pretty crazy ripples, right? So it's going to work for some people, some people not, we want something that works for most people, right? Like, I understand that Control IQ is an amazing solution for a lot of people. And if some people are like, I'm so much better when I do it myself. Do it yourself. That's fine, right? Like that's why we have choice. But in order to design a system for the masses, you're going to have to go with the large majority of scientific evidence, right, which again, shows insulin on board somewhere between four and a half and six hours. So going with five hours and keeping that static when you're aiming for different ranges, and you're allowing people to do different basal rates and carb ratios and sensitivity factors, you will have to lock something in and we've locked IOB. And that gives you some really good results, obviously, but and for skeptics, I will say this, you know, try it. Try it and see what you think. Because it may not be as different as you think.
Stacey Simms 34:27
well, I’ve been shocked to find out that the entire looping community, and the do it yourself folks, all of those systems are based on five hours, pretty much.
Molly McElwee Malloy 34:37
Right, right. And you do have to assume some, you have to make some assumptions, right when you're writing an algorithm that's going to modulate insulin for the masses. And one of the assumptions is how long does this thing last? If you change that, all the other math has to change. And that makes it a very unstable algorithm. A very unstable system. And then it’s not for the masses, right? So that is why it's locked in and there's a lot of scientific evidence. And the DIY community has embraced us too, you know, at that five hour time frame.
Stacey Simms 35:13
In terms of the rollout Molly, I remember when we got Benny's pump about a year before Basal IQ was available. And as I was looking back, it was a pretty seamless process for us. In that I remember it was FDA approved. We got the email, we got the prescription from our doctor then Tandem said here's your code, and we downloaded it and the whole process took from FDA approval to on Benny’s pump, with no special treatment, was 35 days. I'm not going to hold you to that. I'm not asking you to keep to schedule, but I am going to ask and I think 35 days was pretty great. Is there anything that you all learned from the Basal IQ roll out that people who went through that can expect to experience differently this time around or did it work pretty smoothly?
Molly McElwee Malloy 36:00
Yeah, so I mean, you always learn, right? You always learn, and we're always learning and Tandem is excellent at collecting data and then understanding, you know, and learning from it. So one of the things that we did, we did learn there is that we needed a more robust patient portal. And so we've done that we've built a more robust portal, and we've built a lot of automation in the background. So doing things like if you entered, you know, I'm going to update this and your physician had a blanket statement on board. And, you know, we could automatically line those two things up. It doesn't have to be a separate step it just automatically Yes. Okay, you're good. We have this checked in our records checking. We have this and this is on file, and we can do all of it. So there wasn't a lot of automation that there is now and there were maybe a couple extra steps involved in getting people either approved or making sure we had all the documents and we've streamlined all that. So it should be a very seamless process. The update itself could take eight minutes, but it shouldn't take much longer. You know, it's the eight minutes from, you know, whatever you're on now the Control IQ, and then you know, and then just reschedule it and doing the online training right before that, that's, you know, a little bit of chunk of time, but I think 35 days is pretty good. So we got approval this past Friday 13th. And we plan to roll out those emails to existing customers a week of the 13th. So it might be coming at close, but I think you can probably you could probably figure on the 35 days.
Stacey Simms 37:43
(laughs) I'll give you some grace for the holidays. I mean, the last approval was August, so we only had to worry about back to school. I'm not too worried about 35 on the dot. I did want to ask you a couple of questions from the Facebook group, the diabetes connections Facebook group, you've answered a lot of them, but I had a really good question from Tim who was asking about in the clinical trial, he said, You know, people were able to familiarize themselves with the pump in the system about two to eight weeks, I guess. So he said, what took place during that period? And how much interaction with healthcare professionals was required? So I guess the question really is, how much do I need to interact with my healthcare professional? How much do I need to ramp up and learn before Control IQ will work well for me, we've mentioned you know, there are variables.
Molly McElwee Malloy 38:29
So I think, and I think looking at that run-in phase, that was what it was called that two to eight weeks is that when you were taking people from multiple daily injections, introducing them to CGM technology, introducing them to pump technology and getting pump settings straight. So that was the longer run in period for people who were completely naive to both CGM and pump technology. And they could they could be allowed up to eight weeks, I don't think most of them completed their run-in phase much faster than that. And most people have people that already had pump or CGM or some knowledge of one or the other could go but at a much faster speed. So it was just getting them up and running and comfortable with the technology and the physician or whoever was overseeing at that site felt comfortable that, yes, this person is ready to proceed to the next step and go ahead and use an automated system. So that just allowed for all walks of life to come in and to do this trial. And that's really what that was about as far is, you know, how many connections how many touch points with an HCP. You know, I can't speak specifically to each situation. But typically, in a run-in phase when you're getting people up and running that have never used technology before, you might check in with them every couple of days and then do a download at the end of the week and then check those settings. So And I would suggest at a later time you having one of those sites, the principal investigators on to talk about the studies it’s fascinating. And they could really get into the weeds of these details, because I think Tim had a really good question about that. As far as the average person though, getting up and rolling, the big thing with Control IQ technology, is you have to have good pump settings. Right. So that may be a couple of touch points you maybe have to have with your HCP if you've never had a pump before, right? Or you're and you're just waiting for the first time. Or if you've had pretty poor settings, and maybe pretty poor Control along and you've never really sat and been like, Huh, I wonder if these are right, or your HCPs never sat down with you into like, let's take another look at this. That that may take you a visit or two but if your pump things are pretty good, you should be fine to go And then you can check in with your doctor. At your comfort level, right, like there's no recommendation. As long as you feel like you're doing well, then great.
There is a mobile app that will roll out with this. It's embedded into the technology update for Control IQ that will give people access to this mobile app, which will be available on Android and iOS. But this will allow for automatic uploads to the cloud. So the data will be going seamlessly to the cloud. You could also then see it on your phone. You cannot yet bolus from that phone or dismiss alerts or alarms. But you can see what is happening from that phone. And it will, it's a ways to send data to the portal so that your data is always updated. And so you know, your healthcare provider can check in and say how you doing and I see this is happening or I see that's happening and you can all beon the same page without actually, we go into the office or upload your pump or any of that stuff. Yeah, I believe it that process.
Stacey Simms 42:08
That was going to be my next question. But my understanding is that the phone app is going to be just for healthcare providers as it's rolled out, and then consumers can use it down the road. Is that not correct?
Molly McElwee Malloy 42:19
No. So there are two parts to this. So the app will be on the patient's phone, right. That's how the data gets the cloud. So the space is going to have visibility to their data. The data going to the cloud goes to the HCP portal, right. So that's the healthcare professional portal, the portal that we offer up to professionals so they can manage all their patients in one place. Right. So they log in, they can see data as long as you have Wi Fi available Wi Fi is both publicly and people having it at home or you can choose to use cellular data. You can send your data for the cloud every five minutes.
Stacey Simms 43:04
I just want to be clear. So when I get my Control IQ, let's say, let's say I get Control IQ by the end of January, when I get Control IQ on Benny's pump, he will be able to look at his cell phone, not do anything with it, but he will be able to view his pump data in real time on his cell phone.
Molly McElwee Malloy
Yes.
Stacey Simms
Yeah, that is amazing. Okay, so I know that many people who are newer might think, well, that's not so amazing. But I mean, after 13 years, you know, we had these dumb pumps and no CGM to have Benny be able to look at his phone and say oh is was my battery charged. Do I need insulin? You know, even the simplest things. And then the idea is down the line. And maybe you can give us a peek into the future. As you said, You can't bolus from it, but possibly someday, soon.
Molly McElwee Malloy 43:50
Oh, we are working on integrating the ability to do a mobile bolus. Yes.
Stacey Simms 43:58
All right. I'll leave that there for now because I know Talk to you another hour about it. But then my last question on the phone is, what about remote data from the pump? Can a parent caregiver, you know, friend spouse, once the Tandem information is on the user's phone, can it be shared.
Molly McElwee Malloy 44:15
So we are working on a remote monitoring feature. But at this time, it will just be available on the patient's phone, and it will be a way to get the data to the cloud. Now you could log in to see connect and look and see what's going on with Benny at school. If he's if he's got Wi Fi going. It's not really meant to be a remote monitoring system is approved for that. But you know,
Stacey Simms 44:44
(laughs) I’m just thinking of all the parents I know All I care about is is it charged and is there insulin in it, but I know a lot of people really want to see, you know, everything but that's really interesting.
Molly McElwee Malloy 44:52
It could be that you know, and then some people know how to like do the mirroring on their phone to another device and you know, there's going to be people will figure that out. And we will eventually have a formal system for that. And again, nothing is intended to be remote monitoring or you know, per share type viewing. It’s supposed to be a, you know, a secondary viewing device of seeing the data. But you know that data is going somewhere and you can log into that place. So, you do with that with whatever you want to, but you'll be able to see that data if he's got Wi Fi going.
Stacey Simms 45:32
All right. before we let you go. I have to ask you, we started this whole conversation about you talking about, you know, finally relaxing when you use an automated system in 2006. So here we are. 13 years later,
Molly McElwee Malloy 45:50
I know.
Stacey Simms 45:53
You've been using Control IQ I shouldn't make that assumption, but have you been using Control IQ?
Molly McElwee Malloy 45:58
I do have Control IQ Okay,
Stacey Simms 46:00
and I'm asking you this I know I may be limited in what you can say and I understand that. Are you as relaxed and feeling more in Control of your diabetes as you had hoped? Back in 2006?
Molly McElwee Malloy 46:15
You know and.. sorry, it makes me little choked up.
I am in a place I never knew existed, right? This is a place that I dreamed about. I'm not worried about what's happening with my blood sugar. I'm not worried. We had my daughter's third birthday this past weekend, and I didn't worry about, was my bolus enough for the cupcake because like it had my back, right? Like, I was like, if it's, you know, this more than this, whatever, it's got me if it’s less than this, it’s got me like, I didn't worry the whole day and I stayed in range the whole day and Got to enjoy my daughter's birthday without worrying about my diabetes. So that was pretty awesome. And that's where I want to live, right? Like I have other things to do. Everybody has other things to do than to try to be their own pancreas and their own organ. So let's relieve that burden and then you just interact with it with meals with exercise, you know, when you need to. It's much more of a relief than I imagined because in 2006, I was hooked to laptop.
Stacey Simms 47:35
Oh my gosh. That’s right!
Molly McElwee Malloy 47:37
Yeah, I was hooked to laptops with four IVs in my arms. And I was willing to do that. And I would have walked around like that. So this is some space age invention that never entered my mind that this could have happened but it is beautiful, very eloquently done. I have to hat tip to the engineers at Tandem, who took you know, years and years and years and years of research to work, you know, work done in neat tidy ways, right? And then put it into a system and made it this eloquent and this beautiful. Where I don't have to think about the 50 things I would have thought about before, you know, is my laptop plugged in and my plugs into the right USB port, my, you know, the things you've got to think about if you are plugged into bigger machine. Sure, like, I don't want to think about any of that. And, and during research, you know, seeing in all the different iterations. You know, we still had even we have a cell phone, we still had the fanny pack, right? Because you had to keep the receiver and the phone near each other and all this other stuff going on and the pump.
And now I'm just walking around with a CGM and a pump on and it's doing it and I don't have to worry about any additional things to keep up at it's pretty great, it's pretty awesome. This is a place that I never dreamed, I never even dreamed of. And I'm just so happy to be here.
Stacey Simms 49:10
Molly, thank you so much for joining me for spending so much time talking about this. It's been remarkable to just for the few years that I've followed along in your journey, it's been wonderful to watch. So thank you so much. And I cannot wait to get this for my son!
Molly McElwee Malloy 49:29
that I can't wait to see what you say. Because, you know, we're like to 2.0 we’ll make 3.0 We'll see what's going on. So your feedback, everybody's feedback is so valuable.
Stacey Simms 49:40
I would have liked to have ended on that emotional note that you have there. But we do have to say, for for many people who have been in this community for a long time, who are emailing you and me saying, Why can't I get the target under 100? Why cant I do this? I want this feature. I want that feature. It's not that they're that people are greedy. It's just that you know, you know we all we all want this so badly. It's a great reminder that this is the first step. This is this is the beginning of the automation. So, you know, I want it all too, but I get it. And I just think it's fantastic. So yeah, this is this is the first one with Tandem. Let's see what happens to the future. So gosh, it's so exciting.
Molly McElwee Malloy 50:21
It really is. And I could say to people who want to customize everything, want to do everything good. Look, the future is coming. And it's coming faster than we then we could have dreamed up and I realized we waited a long time. Trust me, me of all people. I know how long we have waited. But this is a really solid system that we get to build upon. It’s going to be a phenomenal ride. Like I would invite them to try it. See if you can relax a little and see if it brings you any kind of peace of mind. And then we'll work on getting the targets exactly where you want them.
Stacey Simms
So much more information on the website please check it out. And I know many of you have unanswered questions you know you really want to do a super deep dive you want more we will dig into the research as Molly mentioned, I promise we will do mentioned I promise we will be doing follow ups on this as a tandem family. You know, we'll have Benny fool around with it. let you know what he thinks I'm hoping to get him to do a review. As soon as we get control IQ, which, you know, we're not jumping the line, we're there with all of you. So hopefully by the end of the month, beginning of February, I'm really hoping that we'll have control IQ on his pump.
And, you know, that brings me to just a quick personal note on Ben, he was diagnosed 13 years ago, in December. So December of 2006, is when we heard those words, you know, your child has type one diabetes. And I remember a few bits of information from that day, we were not told, thankfully, we were never told, oh, the cure is five years away we were we were never told that and I had been a medical reporter for many years, and I'd covered type one diabetes. And I'd actually covered failed products like the gluco-watch and things like that. So I had my my knowledge around me and I knew there was going to be no cure in the next five years. So we didn't have that. But our endocrinologist did tell us that the artificial pancreas was in the works. And he said three to five years. And we would probably have that. And I have been hopeful, you know, cautiously optimistic, I didn't hang my hat on that. And I knew we'd have to learn to live well with diabetes without an artificial pancreas. But when I think now to 2006, knowing that that is when Molly, within that trial, and other people that I've been so lucky to meet and talk to, since people like Tom Brobson, so many people at JDRF, who were involved in the early early artificial pancreas project, , it kind of boggles my mind to think that I could go back to Stacey in 2006 in that hospital room and say, Look, it's not going to be here as soon as you hope. But your son's going to be fine. And you're going to get to talk to these people that right now are testing it out. I mean, to me, it's just wild. And more importantly than than me still me getting to talk to all these people much more importantly, is that the people with type one as you listen my son get to use it. I'm so excited for control IQ. I'm so excited for anything that takes any bit of burden away from people with diabetes. I'm not looking for the world's lowest A1C? I really know that I am looking for a healthy A1C that lets my son lives a life he wants without diabetes being a pain in the ass without his mother texting him 400 times a day did you bolus Did you check? Right all that nagging stuff? I don't want him thinking about it 24 seven.
When you talk to people who loop when you talk to people who've used open APS, right, these do it yourself systems. Their first response to you isn't, look at my fantastic A1C, although they're usually very good. It's, well, I get more sleep. Wow, I think about diabetes less. Wow, I worry about my kid less. And that, to me is what it's all about all of these decisions. I’m getting emotional thinking about it. All of the decisions that everybody who has diabetes, forget the parents that the people with diabetes have to make and that burden that is on you. I hope systems like this. Just relieve it a little bit. It's a good first step. It's not the end there is a long way to go. But that's what I am hopeful for. Okay. But that's what I am hopeful for.
And I know that I'll hear from you. You wonderful do it yourselfers who will be figuring out ways to you know, hack the sleep mode and change the exercise mode and figure This stuff out. So we will move forward with lots more information in the weeks and months to come. You know, I don't have a way to wrap this up with a big bow. I don't have a way to end this year by, you know, saying something incredibly motivational and giving you a boost into the new year. But I do have to say that it's so exciting to end 2019 with the approval that frankly, I've been waiting for all year, and I know many of you have as well. And seeing that as another step forward. And looking forward to 2020 and what may come.
Our next full episode will air on January 7, but later this week, I'm going to be releasing a new minisode I'll be doing more of these in the new year just really short episodes where I share some thoughts or some advice. love to know what you think about all that.
Big thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. wishing everybody a happy and healthy New Year. I'm Stacey Simms and I'll see you back here in 2020.
(disclaimer)
At times I mentioned tandem diabetes care. However, I am not compensated by tandem for my actions. And tandem does not support or control this content. I have created the content and it is based on my personal experiences and observations.
Transcribed by https://otter.ai
When 11 year old Elise Sammis applied for the Food Network's Kids Baking Championship, she didn’t think twice about telling them - right up front - that she lives with type 1 diabetes. She says she wanted everyone to know in order to show that diabetes wouldn't keep her from her love of baking, or anything else.
Check out Stacey's new book: The World's Worst Diabetes Mom!
Turns out, there's another young woman with type 1 on the show this season! You can learn more about Naima Winston here.
Stacey met Elise & her mom, Natalie, at an event in South Carolina. They spoke about the show, the stress and her diagnosis two years ago at Disney world.
Join the Diabetes Connections Facebook Group!
In TMSG - good news at the dentist - and it wasn’t about cavities.. and we'll share a story of a lot of spirit at Walt Disney World Marathon weekend.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Episode transcript (rough transcription, please forgive grammar, spelling, punctuation)
-----------Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
Announcer:
This is diabetes connections with Stacey Simms.
Stacey Simms 0:23
This week, when 11 year old Elise Sammis applied for the Food Network's kids Baking Championship. She didn't think twice about telling them right up front - she lives with Type 1 diabetes.
Elise Sammis 0:36
No, that was very important to me, because I wanted like everyone to know that if you have diabetes, you can still do the things that you want to do. And it was super cool because there was another girl named Naima. She's my super good friend and she had also had type one, and she's super sweet. And we were both like, yay, we both have type one!
Stacey Simms 0:52
That's right. There are two young women with T1D competing on this season of the show. I met Elise at an event recently, and I talked to her and her mom about the show the stress, enter diagnosis at Disney World
in Tell me something good. Good news at the dentist and it's not about cavities and a lot of spirit at Walt Disney World marathon weekend.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of diabetes connections. I am so glad you're here. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two. The show this week is airing a little earlier than usual. Yeah, we almost always drop the interview show the longer show of the week on Tuesday. But because the Kids Baking Championship is on the Food Network on Monday nights. I thought it would just be fun to release the show with Elise on the day of her show.
I love the baking shows, and we used to watch them. I feel like it was around the clock for a couple of years my daughter got into them right around the same age as Elise between the ages of like nine and 12. We've watched so many of these baking shows, we made cupcakes, we didn't ever compete. My daughter never wanted to be on TV like that. But it was great. And we certainly got a lot of comments about the cupcakes because I would post them on social media and I'll put some pictures up in the Facebook group because these were, you know, really big. I mean, they weren't beautiful, but they were sharks and cupcakes that look like popcorn and you know, all the dramatic fun stuff. And people would say all the time. Oh, it's too bad that your daughter has that hobby. What are you doing about your son? And I'm like, I'm not letting him eat 17 cupcakes, but I'm not letting her eat 17 cupcakes either. You know, it's fine with Type 1 diabetes, you just have to know exactly what you're eating. Right? It does take extra work. But now go ahead eat the cupcake.
And with those memories right in the back of my mind, it was even more fun to talk to Elise and to Natalie It is always a bit dicey talking to reality show contestants. You know, we've done this before, and it is always fun. But it's not just about what they can't say because here obviously they can't talk about the show, even though it's taped weeks and weeks months ago, but because you never know they could win the whole thing. They could be off the show before this episode even airs. But I'm so thrilled that Elise is is one of two girls on the show with Type 1 diabetes and it was great to talk to her and her mom and no matter what happens on the show, she is well on her way quite a personality and really just a fun kid.
All right, first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain and not only the ordering and the picking up, but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test trip plans, plus you get a Bluetooth glucose meter, test strips, lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn the founder of One Drop lives with type one. They get it. One Drop, gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach. learn more, go to diabetes connections dot com and click on the One Drop logo.
My guests this week are Elisa Sammis and her mother Natalie. Elise is a contestant on this season's Food Network kids baking show. She was diagnosed with type one at age nine and we talked about her diagnosis. But she was already baking a lot by then. And luckily her family realized you can continue to bake and enjoy dessert even with Type 1 diabetes. Being on a big show like this is a great chance to educate and what's really fun is as we mentioned, Elise isn't doing it alone. There's another young woman on the show Naima Winston from Baltimore is her name and I will put some links and information on our episode homepage, where there is also a transcript about Elise about Naima about the show and more information. So please check that out. That's a diabetes dash connections.com. And while you're there, please note every episode from the last four years is there you may be intimidated to scroll through I get asked all the time, what's the best order? I actually think the best way to listen is either to use the search box and put in whatever interests you Disney, Dexcom, Tandem, Omnipod, right or you can search by category as well. If you click on the tab that says all episodes, you'll see another search box to the right and then filter by category. And that is a really great way to dial into what you want the categories including advocates, athletes, artists, actors, education, technology, travel, family, you know, there's a whole bunch of ways to narrow this down because we've got more than 270 episodes now Holy cow. And I really urge you to go take a stroll through and see what interests you. Quick note, this interview was done on the road, I was speaking at the JDRF chapter, the Palmetto chapter in South Carolina. So the sound quality is a little bit different than when I'm doing things in the studio. And I may be a little soft at times. I'll tell you about the technical nonsense that happened. I'll tell you about that at the end of the show. So let's get to it. Here is my interview with Elise and Natalie Sammis.
Let me start with you, Natalie. How did you guys even find out about this? How do you get your kids on a show like this?
Elise Sammis 6:38
Well, actually, I didn't get my kid on the show. Elise put herself on the show. Basically, we live in the south and hurricanes are prevalent. And about a year and a half ago, at least you think it was Hurricane Matthew and we got five days off of school. And so I was very bored around the house. So I looked up, like, because I like to bake and I was getting into it. So I looked up like baking competitions and I saw like form so that we could, like fill out a form so that we could try out. And so I made a video for it and I sent it into them. And after that we didn't hear until like six months later.
Stacey Simms 7:23
So during that five days and your home and baking was that your first foray? Was that your first time into baking or is it something you'd always like to do?
Elise Sammis 7:30
I'd pretty much always like to bake from like, I guess like when I got diagnosed with Type 1 diabetes when I was nine, it was really stressful. So it was just really like stress relieving to be able to bake and it was like creative.
Stacey Simms 7:46
Alright, so we have an audience that knows about diabetes. But what you just said when I was diagnosed with type one I found it really stress relieving – that could sound strange. What were your thoughts as she was enjoying this as a younger kid?
Natalie Sammis 8:06
The two background stories, I think that are important in this piece are that a I am an avid Baker. And so literally, sugar is in my blood at all times. No, I my motto is dinner is always just a means to dessert. That is my life motto since a small child. And also number two, I'm actually an RN, I have my Bachelor's of Science and nursing. So I understand the principles. I understand that Yeah, you skirt the line a little bit closer. When it comes to desserts. It is a little bit more complicated in your carb counting. But it's also it's very doable. It's not off the table. It's not something that someone should be terrified of. It's something that you can balance and put into your life. And also we realized that half the time that we bake, we don't even eat it really we are sharing it with our friends or we're posting it like on social media to feel unify with other people. People It is really, truly a creative outlet for us probably like how people feel with art, but I don't get art and I cannot eat art. So we just go with the dessert side of the world and we like it and we make friends by giving people desserts.
Stacey Simms 9:15
How old were you when you were diagnosed?
Elise Sammis 9:17
It was the day after my ninth birthday, and we were in Disney. And there was my birthday and my mom actually fed me a chocolate chip cookie for breakfast. Right there. So we were like noticing a lot of symptoms. I was really thirsty all the time. So then my mom took me to the urgent care clinic, the CBS for CBS. And like the MinuteClinic the MinuteClinic Yep, yep. And I got and she got a glucose meter and she thought as a UTI at first.
Natalie Sammis 9:52
Right. So she took a blood sugar first and it just read error. When the very first meter read error. The nurse in me problem solving. I thought, ooh, there's something wrong with the machinery that that Wait a second, I know how to litmus test this. So I stuck my own finger, I tested my own blood sugar and it said 96 I still remember the number and my heart sunk. I knew at that moment, deep down that she had diabetes, but I didn't even then didn't want to admit it. Because, you know, that's the worst. So we went to the urgent care and the urgent care. I still remember they looked at us like we were crazy because we walked in. And Elise is holding a Diary of a Wimpy Kid book. And she's just flipping through and reading it and she has a bottle of water in one hand, because at that point, I said, You drink as much as you can. Right? Right, right. Just drink this. And I said, I think my daughter might have diabetes. They look at me, like, does she fall down? Did she pass out? Like I'm like, No, but she's drinking me. Are you from the area? No, we're on vacation at Disney. And they're like, so you stopped your Disney vacation and you think she has diabetes? I'm like, I know. I basically said tell me I'm crazy. I want to walk out of here laughing like I'm just a paranoid Mom, I just cannot in good faith just go back home after seeing the error recording and having those symptoms and I just need to know so we waited quite a while because we were not on the urgent list at that point. And even the doctor said, I think it's probably just a UTI. But he respected my wish to check your blood sugar. And at that moment, their meter read error Hi. And they said he pulled out his personal cell phone and said go directly to Orlando Children's Hospital.
Stacey Simms 11:31
Do you remember any of that? I mean, nine is old enough, but sometimes things get confusing. Do you remember like, anything that your mom was saying? Or what's going on in the hospital?
Elise Sammis 11:39
Well, I remember that like when I got in there. I was asking like, Is it ever going to go away and everything then I remember the turkey bacon was disgusting
Natalie Sammis 11:49
They put her on this restricted carb diet. So all she could eat with like a massive amounts of turkey bacon,
Elise Sammis 11:57
turkey bacon. like sugar free jello.
Stacey Simms 12:03
So did you ever get back to Disney World?
Natalie Sammis 12:05
Yeah, we did we After that we went to Hollywood Studios. We took it that Disney paid for us for a taxi or an Uber. I can't remember which one back to our place that we were staying in the other. My Elise is the oldest of four children. So the other kids and my husband were already at the party because we said go on without us because we had been in the hospital for about three and a half days. And we got in that taxi cab we threw our suitcases in there and we saw the next bus to Disney and we ran our little hearts out and barely caught the bus and we didn't get to do too much that day. And then we went home the next day but Disney was kind enough to give us passes to come back and when we had kind of our life under control a little bit more and we understood more about diabetes in real life. We came back probably three months later in May
Elise Sammis 12:52
is a lot better experience than the last. It was a lot more fun. Okay,
Stacey Simms 12:57
so after Disney World when you go home You say you figured out diabetes in a bad life? You were already enjoying baking at that point. After all that turkey bacon. Were you worried? Like that's it for baking or cupcakes? Or did your mom kind of jumped right back into it with you?
Elise Sammis 13:14
Well, for about a week later, I was like, I don't even know like what I can or can't eat. And so we like kind of researched a lot. And then I was like, wait, I don't have to just not eat sugar. I can just take insulin for it. So then I was like, Well, I can still bake and stuff. And so that's I was like, yeah, you know, it's got really excited about it.
Stacey Simms 13:39
That's great. So what a whirlwind diagnosis and hopefully we'll have time I want to talk a little bit more about Disney World later, but let's talk about the bacon. You send in the video. You wait six months later, what do you hear what happens?
Elise Sammis 13:53
So like, I've been waiting and then another season came out, and that was like, they just didn't see it. The following, never gonna happen. And then like, six months later after that, I was on the bus and my mom called me She's like, you're not gonna believe who just called me. And I was like Harry Potter.
Stacey Simms 14:14
well, she was almost 11.
Elise Sammis 14:18
And then she's like, no, it's the kids baking championship people and they want to interview and I was like, Oh my gosh, yeah. So I ran home. We did a lot of Skype interviews, and I had a lot of assignments and I had to make a ton of desserts. And there's a lot of other videos I had to make for it. And there's a lot of interviews as the mom you know, please seeking I mean, this is an exciting time but at the same time it's a lot of hopes for a young woman to have Yeah, yeah. Nervous that after all of this work, she wasn't gonna get on the show. Oh, very, very guarded, I guess will be the word.
Natalie Sammis 14:53
I mean, I'll backtracking when she said mom can I turn in the video and I did have to click like I agree and I help fill in. Some of the, like contact information so it was correct, because at that point, you were 10 years old when she turned in the video. And I told I still remember and people laugh at me still, at least still less than me. My caveat was sure I'll turn in this video but you need to understand that you will never hear back from them, they probably will never see it and you're never going to be on that show. And if you're okay with all those three sentences, I'm feeling okay with letting you turn this in. Because I'm more of a realist. I am Elise is a is a goal setter and a go getter and a dreamer. And she proved me wrong every time so I don't know why I keep doubting it. But I just I think I do that out of protection as a mom and so yeah, as time went on, you couldn't even the process is when they Skype, the parent in the room is not allowed to be in the room. You can't be there. They want the kids to stand on their own. They don't want some mom in the corner given them most of coaching and so I would put my ears to like the door but I have a he was four at the time. And he would be like read to me we've got this new dog that was like two months old and an idiot, so I'm literally like hearing every fifth word. And even then I'm like, oh, like so excited out of my mind that I couldn't even concentrate. So I mean, it was crazy. Just week after week, it went on for from March until June, just on and off on enough like, yes, you made it to the next step. Then we would hear crickets, crickets crickets, and you don't want to be the annoying mom. And then they not pick you because you're this weirdo psycho. So you had to play it cool. You have to kind of just wait for them. And then the next kind of like little piece of cheese would come and he would chase after that.
Stacey Simms 16:34
so then this is going on for a while. When did you really start to get close? What happens? I don't know how much you can share. So don't tell us what you can't. But how do you know that? This is going to be it?
Elise Sammis 16:44
Yeah. Well, we were doing all these interviews and videos and I was it just kept going. And I was like, when are they going to cut to the chase and like, actually do it. And so then we got a call in like early June. They're like, we want to fly out 15 kids, we're gonna send three home and all the other ones are going to be able to be on the show. And I was like, we're finally going to LA.
Natalie Sammis 17:09
Yeah. So we knew flying out there all the way to all this work. I mean, this is now we've been up till 2am, baking things having to print that present the next day unless it's work. I mean, huge amount of work. And it's a risk. It's
Stacey Simms 17:24
already going home. And then the competition, you know,
Natalie Sammis 17:27
oh, yeah. So our goal was to get on the show, and knock it out the first episode. And we didn't do those things so that we can just hang our head forever.
Stacey Simms 17:36
What happens when you're there? I mean, you know, kids are generally pretty friendly, I would think. I mean, you want to be friends, you're hanging out. There's got to be a lot of downtime. If you're not familiar with TV production, there's so much downtime, is it hard doing that knowing that they're not going to stay?
Elise Sammis 17:52
It was super hard because like, the first day like all of them were super nice, and they're all like super friendly, and like we went to the mall, and we hung out at the pool together. And like, I didn't want any of them to go. But they had to, there was no thing in me that was like, I want so and so to get out. Yeah.
Stacey Simms 18:13
So yeah, be nice if everybody could win. But that's not how the show works. Yeah. All right, what can you tell us because a couple of episodes have aired already, but when this podcast airs will probably be further down the road. So I'm curious if you can share anything about what goes on behind the scenes because I've seen the show and some of it looks very ordered. Some of it looks very chaotic. is some of that chaos planned? Or is it just you guys are really doing what you're doing? What do people really knock stuff over?
Elise Sammis 18:38
Sometimes they would tell me to ask how are you doing so and so? And they really like good. And then sometimes they would say like, tell all the other bakers you have 15 minutes left. And the other stuff we would just say random things. Yeah, your mind.
Natalie Sammis 18:56
Well, it was funny to that. I think there's a couple times that the cameras People I thought it was interesting. They have 13 different cameras going to get all the angles. They have one big overhead camera. And she said, anytime anyone made a mistake, you knew it, because you'd feel the crane. Whoa, hovering over you. So you didn't want the big camera to go on you. You knew that either something's on fire or going downhill fast. So no one wanted the big camera to be swooping in their direction.
Stacey Simms 19:27
we haven't really talked about diabetes and the show. That was in your video, some of your audition. Yes. You mentioned it. Was there any hesitancy on your part to put that in? Was that important to you
Elise Sammis 19:37
know, that was very important to me, because I wanted like everyone to know that if you have diabetes, you can still do the things that you want to do. And it was like super cool, because there was another girl named Naima. She's my super good friend and she had also had type one, and she's super sweet. And we were both like, yeah, we both have type one.
Stacey Simms 19:55
I was gonna ask you about Naima because I'm obviously we're not interviewing her for the show, but I've seen her story. Well, and it was incredible to me. So far the posts have all been, oh, there's two kids with type one on the Food Network. And everybody's been saying no, no, no, you're confused this name and no, you're no, you're confused. Oh, it's really
Natalie Sammis 20:12
well, well, even we were confused. But we walk in the first day and its orientation and all the sudden I'm hearing Dexcom alarms and I'm going Elise, Like what? Like, like it is because it sounds too far from us. And she should have it in your bag. And I said, Who's next column? What Where's your Dexcom? And then this other little girl pipes up and says, Oh, that's mine. And that moment, it was that instant bond of like, you have to wait, we have to. It was our first I think your first real friend like you have acquaintances that have type one, but this is the first time she connected with some one else on this kind of level who has type one and I think that's special.
Stacey Simms 20:48
So you guys have kept in touch.
Elise Sammis 20:50
We have a big old group chat. We all talk every day.
Stacey Simms 20:54
That's cool. I wish I can ask you more but I know Yeah.
Elise Sammis 21:00
Did any of the other kids talk to you about diabetes? I mean, kids don't always do that. I'm just curious. They were pretty curious. And they're like, what's on your arm? And I was like, Oh, that's my insulin pump and everything. They were super nice and they're like, they didn't really care about it. They were just super sweet.
Stacey Simms 21:29
Did any of the parents because I mean my son doesn't bake and I remember when I've been parental settings for sports or there's always somebody who's like, well can you really eat that? You know, anything like that?
Natalie Sammis 21:30
No one really I think because we had gotten that far. And they knew we were that serious about baking. They can't bear Yeah, there's two of us they dare not I think what we are all became like very good friends. I think it's always eye opening when you get to know other people that the little bit of understanding of what type one really means day in and day out and on vacation and we were in a very stressful situation and we were up I mean, her blood sugar would just go crazy every time she baked it every time she was on set I wouldn't even let her eat a single carb because I already knew her blood sugar would be through the roof when she's getting stressed her her levels go high and so her Dex have just been going off. I can't believe we can't hear it at the show you you are only there but it almost felt a little good to be able to just kind of explain and see what is really like it Yeah, we were up at 2am and 3am and 4am treating highs and then treating lows and this is our everyday and oh at least go change your pod or and they kind of like look at you with like huge eyes like you do this every day and you're kind of like Yeah, we do. It's all right that like what I am so proud of at least and I don't know if everyone told you this really but she did not once ever use diabetes or her blood sugar level as an excuse whenever she didn't perform how she wanted to perform or when she was stressed or other kids won certain competitions. She Never ever, ever even had that in a thought like it does not hold her back physically or mentally ever. I want to have my little mom sign like “do you know her blood sugar is 328, do you know hard it is to be thinking clearly?!” like, I just wanted to say that like you don't understand how cool she is right now.
Stacey Simms 23:19
So but let me ask you because obviously diabetes did not stop you from doing this. But did anything happened during the competition where you did have to leave to change a pod? Or it Did you know, mess you up? Did anything ever happened along the way because it does happen sometimes.
Elise Sammis 23:32
Thankfully, like nothing like sometimes the medical my medical person, she was super nice. She would like come over and give me some insulin but I would just keep on baking and she would like BB
Stacey Simms 23:46
Yeah, so was this somebody that the show provided
Natalie Sammis 23:48
that they had two medicd, so they had one assigned to Naima one assigned to Elise and I'm sure they would cover the other kids who like cut themselves to cut themselves on fire, but they were basically there to hover over The two diabetics.
Stacey Simms 24:01
Did you ever catch yourself on fire?
Unknown Speaker 24:02
No but someone did we had to slap it down with a giant pan.
Natalie Sammis 24:07
Yeah, yeah, there's some fire soon. Yeah. Spoiler alert. Awesome.
Stacey Simms 24:13
So much to ask you about the show. But I'm curious as you watch the show, the judges are a big part of it. You know, were you nervous meeting them? Was it fun? Anything stand out. I don't know what you could tell us.
Elise Sammis 24:25
It was super exciting meeting them and like Valerie was super nice. And she was just like a mom like the whole time she like was very nice. That was nice.
Stacey Simms 24:37
Sweet the judges of Valerie Burtonelli, who we all know from one day to time, all those great shows and then Duff is the.. he did Charm City cakes, right? Yeah. Duff Goldman. We were huge fans. My daughter is in college now. But we watched Charm City cakes a ton. He was our guy. Yes. And you said he was interesting?
Elise Sammis 25:00
He really funny and like sarcastic and he was really, like nice about the judging and everything and he was really, like supportive.
Stacey Simms 25:08
Maybe you can answer this. They also seem like they're taking it seriously. I mean, they're Valerie's nicer. Some it seems right to the kids, but they're straightforward. They're not telling you Good job when it wasn't right?
Natalie Sammis 25:20
Yeah, well, what's actually funny on I never got to meet them. They only let the kids talk to them meet them. I saw them through like closed circuit TV with no audio feeds, because their parents had to have some sort of eye on their child, but I didn't even get to meet them. But when those kids would come back from tastings and judging things and just baking during the day, they would just say, oh, def came over and talk to me and he was funny, and oh, Valerie, like gave me a hug and I trusted the kids in that setting there. They're not the other I don't want to call it other people's judges names and other shows, but they're not harsh. They're not on kind but they are they are very, they're.
Stacey Simms 26:03
Yeah. They seem to balance the fact that there weren't a kids show. Yeah. But if you're going to be good feedback,
Natalie Sammis 26:07
yeah. If you're going to get that far, though, and how hard we work to get there, those kids can take it. They're not delicate flowers at this point.
Stacey Simms 26:15
So of course, you can tell us how everything went in the end of the show, and you won't get in any trouble. even letting a word well done. I obviously can't ask you about the outcome. And I would never. Was it fun are you glad you did it?
Elise Sammis 26:29
It was super fun. I'm so glad that I did it because it's such like a good experience. Like you got to meet so many friends. It was really like a lesson to me about patients. Because all those interviews and all the time that was like put into it. It was a lot and yet there's a lot of waiting. So that was a really good lesson for me. Do you still enjoy baking? Is that something you think about? Please do? Yes, I feel like I would always do baking is really fun. In like, it likes me be creative.
Unknown Speaker 27:02
This is a good experience for your families.
Natalie Sammis 27:04
It was a really good experience me and at least had a great time. We were kind of out there as buddies. And then my, my husband and the other three younger kids flew out for a couple days to visit us. And they decorated our hotel room with balloons galore and messages on the mirror of good luck. And the little kids and me, myself included this kind of trail along on her coattails and got to have this amazing experience. So it was wonderful.
Stacey Simms 27:30
I have to ask you, she was three younger children. Do they know the outcome? Because I wouldn't trust my kids. No offense, I don't know your family.
Unknown Speaker 27:41
No, they don't.
Natalie Sammis 27:42
They even will sometimes, like try to guess and like act like it's real. They're like Oh, so and so did this and they probably did this or that and will be like, oh, whatever you want to think like we don't even validate it because the the what's the number at least that we will be sued if we let information that we
Elise Sammis 27:58
will be sued 750,000
Natalie Sammis 28:00
Yeah 13 page contract saying that we will not disclose information so we didn't tell the five year olds Yeah.
Stacey Simms 28:07
Anything something else exciting that you all are a part of and I guess this is pretty brand new is your clinical trial for horizon from insolent which is the hybrid closed loop system using Omnipod? So Natalie, can you share a little bit about what is being tested? Is it the full system with the phone app?
Natalie Sammis 28:26
Yes, it's the full system. So it involves they gave us a brand new Dexcom transmitter that has the capabilities of obviously talking to the the Omnipod and to the new I don't do they call it a PDM Do you remember lease, I don't know. They still called the PDM. But it's basically a locked out Samsung and they provide that as well. Along with pods that look identical except for this little blue tab. That worked just the same. Also, what I really really like about this, the whole point of it is that you are able to put it in that Automatic mode they call it and with the auto mode, it's every five minutes the Omnipod index home will talk to each other and adjust the Bazell every five minutes as needed. What's cool about it too, is let's say you forgot your PDM you're locked out Samsung somewhere. Even if it has no range, if you could throw it off a cliff even for at least three days, your basal insulin would still be being adjusted because the Dexcom and Omnipod can talk to each other independently.
Stacey Simms 29:29
Have you used any hybrid closed loop stuff before?
Elise Sammis 29:32
No, this is our first time.
Stacey Simms 29:34
All right. How many days? It's only been a couple of days. We started last Wednesday today. To 60 All right, though. Yeah. So have you seen a difference?
Elise Sammis 29:42
Yes, it is crazy. Like even we went to Disney World last week, and I ate a ton of junk and everything. And I like went to sleep and it would be a little high but that's what your blood sugar does. And I went to sleep and for the night It would be like a straight line I was so amazing it was it's a big difference. Just the normal taking insulin every time you hear ringing
Natalie Sammis 30:09
Yeah, it is just made me feel like less of a nag to like, oh at least check your blood sugar. Oh, I heard your alarm three times a baby. Have you looked at that like that is now silencing our neck. So I have high hopes for it and it really is giving us better control. She's in that crazy stage of life being 11 about to be 12 where it makes no sense. She goes to sleep it looks like she ate a box of Krispy Kreme Doughnuts for no reason and it's nothing but hormones and I don't know unexplained highs and lows. So already this week, it is refreshing to see so many more straight lines. I mean, there's still today we were stuck in the three hundreds for hours and that's just what it is. And but I'm really pleased so far and I'm ecstatic to be able to have it for longer than the three month trial period.
Stacey Simms 30:57
All right. Before I let you go you said you have at Disney World, you ran in half marathon full marathon
Natalie Sammis 31:04
on Team JDRF. The half marathon half marathon.
Stacey Simms 31:07
Yep. So you went back to Disney World. You ran the team JDRF half marathon. Let me ask you first though at least what's it like for you to go back at Disney World? Do you think about diabetes you just have fun when you're there.
Elise Sammis 31:18
I have like weird flashbacks kind of. Because I like like remember walking in that same spot being like, all frazzled, like what am I going to do? But then like going back and feeling like Well, I'm kind of normal now. Like, I got it under control. So like happy for me.
Unknown Speaker 31:35
That's fantastic. So like,
Natalie Sammis 31:37
I had some a mom, I'm going to get weepy no problem very silly. But to see it come full circle to leave Disney World that first time. And you know wonder what your future is going to be like wonder what your daughter's life is going to look like. It's kind of being scared out of your mind. And then to come back to the literally the same place in Disney. I don't know. It has some feel to it. Like, even if you had gone 20 years ago, there's something magic. There's that little spark of Disney that kind of remains the same. So it puts you right back where you were in this time to feel so much confidence. And I still remember on the half marathon, you turn a corner and run into the Magic Kingdom in the it was still dark because it's a ridiculously early marathon. But the castle was all lit up. And I had this like moment of like, Oh my goodness, we've made it so far. I am so happy where where we're at now. We're beating diabetes. I'm not being beaten by diabetes. And at that very moment, as I'm like, getting all bizarre and emotional. I look up and there's Team JDRF fans, right? They're saying that moment of like, oh, then I'm like, wait, I can't praise because I'm practice. So I stopped crying and I kept running and that was it. But yeah, it is a quite a journey, I guess, to come full circle and to go back in that way with so much support and so much like people behind you and helping you raise money for a cause, you know, to help your kid just live a happy, normal life. So it was great.
Stacey Simms 33:18
Thank you both so much. I would say Best of luck, but it's all. So excited to watch. To see how this goes. I hope you'll come back and talk to us again. Thank you so much.
Unknown Speaker 33:29
Thank you.
Unknown Speaker 33:35
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 33:41
Alright, so fingers crossed for Elise and for Naima. I am taping this just after the second episode has aired. So who the heck knows what has happened since and what will happen going forward, but we will certainly be following cheering these girls on. Up next. Tell me something good but diabetes connections is brought to you by Dexcom.
And you know, when Benny was very little, and his fingers would get wet, right? I'd give him a bath or we'd go in the pool. I would always notice his fingertips. And you know exactly what I mean, right? They were poked so much that they were just full of little little pinprick holes. You could see when they got wet. He is 15. Now, I don't really see his hands much anymore. But the other day, he's such a ding-a-ling. He was doing a project for school. He was using a hot glue gun and he you know, he burned himself a little bit. He's fine. He's fine. But when he came into show me I noticed again and every time I do see his hands, it just knocks me out. his fingertips look normal. We've been using Dexcom for six years now. And with every iteration, we've done fewer and fewer finger sticks, the latest generation, the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day in the past. Makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If you're glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. learn more, go to diabetes, connections calm and click on the Dexcom logo.
It's time for Tell me something good. I've got two great stories one was sent to me via Facebook Messenger. The other one I saw in a Facebook group and if you've got a story for me, the easiest way is in my Facebook group at diabetes connections the group or email me let me know what's going on. What is good for you.
Melissa wrote in “I have a Tell me something good. I've been listening to your podcast since maybe the summer and my four year old daughter was diagnosed March 28 2019. You are very optimistic. I haven't found a positive thing with my daughter's diabetes. Until today. It's been a horrible nine months with everything. We had our first dentist appointment Since diagnosis I've dropped a lot of ball since April, when the dental hygienist saw the pump. She knew what it was. I didn't have to explain. The conversation got direct to where we treat for Lowes, Skittles and starbursts and gummies. All bed for her teeth. When the dentist came to check, we had a discussion about the candies. He asked for her Endo's name, and he knew her. He's the pediatric chief of dentistry at the local Children's Hospital where her endo is affiliated, he texted an email to find better candies to use instead of the sticky kind. He went on to say collaborates with a lot of specialized doctors in the Children's Hospital to take better care of the kids. And he said get back to me after a discussion with the endo. I found the experience relieving that I wouldn't have to fight this battle. The dentist got it and my daughter was in good hands being cared for. I didn't think I'd ever find anything positive about our new normal. Today I did. So that's my Tell me something good.”
Melissa, I'm getting emotional reading what you're saying here. Thank you. She writes for your podcast your optimism, and having somebody to tell the story to understand. Her daughter's name is Katarina, beautiful name. And she told me that it's been difficult to find care for her. You know when they're that little it can be so hard preschools, that kind of thing. But she went on to write that they have been blessed. She's been taken care of by her school nurse in an all day preschool. Her endocrinologist who they love and her mother, Melissa's mom, the grandma, who was able to watch her while the parents are at work, and now the dentist, she writes, “I didn't realize until this how lucky we have been. These are battles. I do not have to fight. Your optimism about any life with T1D is something I was envious of. I wanted some of the burden of this disease lifted off of my shoulders, and I was able to see that I have that after this visit. So I'm a little bit emotional here because of all the nice things she said and just having a place to share that with right. It's important to have people who get it and know important it is that the dentist didn't scold her and say you shouldn't be doing that. But said, Let's find a way to do this that works with Type 1 diabetes. And I think that's fantastic. But if it was a little strange for me to hear, even though I know it, I am very optimistic. I am very positive. I put these rose colored glasses on a lot and diabetes is hard.
Type 1 is difficult. Being a parent of a kid with type one it's difficult to it's not all sunshine and rainbows over here. Trust me, I hope I'm open and honest about it. But at the end of the day, we've been really lucky. And I am optimistic and if you're feeling down or things are hard, no judgment, man. It is hard all around. I think I do an okay job of being honest and sharing the ups and downs. But I do know that my general outlook with type one is is an uplifting one. I hesitate to say it because I feel like it's an odd thing to say I feel like it puts me like I'm trying to be uplifting, but the truth is that's how it was presented. To us when Benny was diagnosed, and that makes all of the difference. When you're diagnosed on the very first day you meet a nurse who says, he's going to be fine. I have type one. And I have one child at home and I'm pregnant with my second and don't listen to the scary stories and don't listen to the hard stuff. It's fine. And then the next day, you pick up the phone and call three local people that you know who have kids with type one, because you've met them in your health reporting over the years, and they all say that he's gonna be great. My kids Is this my kid does that it's fine. It really changes than if you don't have those things. And I know how lucky I am to have them. So Melissa, thank you for reaching out. Thanks for a little bit of the gut check, as I like to say the rose colored glasses, but send us any good news and send us anything you want to vent. I hope you join the Facebook group. I'd love to hear more about Catarina. Our other Tell me something good this week comes from the Walt Disney World marathon weekend. That's where Natalie Sammis was when they said they were in Walt Disney World again. Very recently. She was running the half marathon. You talked about with all the jdrf people, they're getting emotional. Well, there's so much going on for that weekend. And I wanted to spotlight Julia Buckley, who's a friend of mine and I've mentioned her on the show before. She is a flight attendant and she is amazing. And she won the Spirit Award for jdrf. She ran on Team jdrf. I don't know how she does it. She flies all over the world comes home runs at Walt Disney World. She always has a smile on her face. So Julia, thank you so much for all that you do. I love some of the pictures maybe we'll throw some of those in the Facebook group as well but to everybody who ran at Walt Disney World, hats off man and now it's a fun race but it's still a lot of work. If you've got to tell me something good story, send it my way. I am so excited. We're getting more and more of these all the time or put them out on social media every week. So I'd love to hear from you tell me something good.
Before I let you go, this is not a Tell me something good. This is a Tell me something embarrassing. So I mentioned the very beginning of the show that there were some technical difficulties when I recorded the interview with Elise and Natalie. And real quick, the way I taped the show, usually is that I do the interviews right from my home computer. I have a little setup little home studio. But the interviews are generally conducted via Skype, and then into my computer and then into a backup hard drive. Later on, I record this part of it like a round the interview, right and that goes right into the computer. But when I'm on the road, I don't want to slip my computer. It's only got one input for the microphone, and I had basically needed three inputs. my microphone, Natalie's mic, and Elise's mic. So I use I mentioned that hard drive. I use a recorder for all of you audio files out there, I use an H five zoom. It is a wonderful little recording device and i i only scratched the surface. I know I'm not using it to its full potential. I can plug two microphones in there. And I know I can do more with it. I could use a sound mixer or whatever. But generally when I have more than two microphones that I'm using a plug two and two Each five zoom. And then I have another recorder where I put on a lavalier mic and a little Clippy mics that you see on the evening news or maybe you've done an interview or recorded something for work and they put a little clip mic on your collar. That's a level layer mic, and I use that for myself. And here's the embarrassing part. The recorder I use when I do that is an old iPhone. And I'm not even sure how old it is. It might be a four, it might be three. It doesn't work anymore for anything else. I mean, I don't certainly have service on it. But it is a perfect dumb recorder. And it's like a tape recorder back of the day. And I had purchased over the years, these level ear mics that plugged into your phone. They're fantastic. But when you switch to the newer iPhones and you got rid of the headphone jack well guess where the lav mic plugged in. So I'm out of luck. I can't use my newer phone as a recorder if I want to use the lav mics. So we get to South Carolina. I'm setting everything up. I'm there early and speaking doing a book event before First I'm going to interview with Lisa, Natalie. So I set everything up. Everything sounds good. The stick microphones, the regular microphones, the one if you ever see pictures of me the ones that have the logos on them. Those are plugged in. They're working fine. They're a little low. I'm not really sure. I think maybe Elise was just very soft spoken. So I'm trying to adjust audio levels. I plug my stuff in, and the old phone, the editing software will not open. I use a program called twisted wave. And it's a great program. It's it's up to date, but the phone is so old. I think it was trying to update the the editing software. So I said, forget this. I'll just use my voice memo. So every phone has a voice memo app. It's fabulous for podcasting. It really works well. You can just record your voice for however long and then you email it to yourself. I have guests do this. Sometimes if it's a really short interview. I don't do it much. But you know, once or twice. I've had people do a short segment and a voice memo is great for them. So it looks like it's working. Everything's fine. We do the whole interview. voice memo is there I can hear it. It's recorded Elise Natalie are fine. I can't Email the file to myself. I can't get it off the phone. It's stuck on this old iPhone three, four. It's sitting there. It's It's wonderful. Amazingly, the microphones I was using picked up my voice enough so you heard the interview. It wasn't terrible. It probably wasn't great, I'm sure john kennis my editor worked a ton of magic on it every time he gets a file from me probably shakes his head and said, yes, this person obviously worked with a technical producer her entire radio career. So I'm now in the market for a new level ear mic, because if you know anything about audio, and you heard me say the h5 zoom, you know that you can also plug a lav mic or any kind of really smaller mic into another outlet very easily. And this whole thing could have been avoided if I had just done that. So that was my adventure. I figured we'd just soldier on right you just want the stories. You're less concerned with pristine studio sound, right? Haha. Well, look, I'm going on the road a lot this year. So I figured I better learn how to do that. And figure out how to better get it done. So stay tuned for the continuing saga of how the heck Stacy makes her lovely mix work. Alright, the next stop is not too far from me. I'm going to Raleigh the first weekend in February Raleigh, North Carolina for a jdrf type one nation summit. Then I am going to Maine the following weekend to South Portland, Maine, to talk to the main pea pods, very excited to talk to this group. And we have a very busy schedule after that. Thank you, as always, especially this week to my editor, john Drew kennis from audio editing solutions. Thank you for listening. Remember this Thursday, we do have another minisode coming out this week. I'm talking all about untethered, what that means, why we have loved it. I got a bunch of questions after I mentioned this in a couple episodes back. I talked about receiver a little bit which is a newer, long acting. So I'm going to go through untethered, what it means why it's not just for teenagers, and why we've had such good success. With it, and that is our next little mini episode. I'm Stacey Simms and I will see you back here on Thursday.
Benny 46:11
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