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.
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.
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.
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.
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.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
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.
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
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
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
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
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.
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
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.
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.
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.
Get the App and listen to Diabetes Connections wherever you go!
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.
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
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.
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
As we all wait for the release of the newest hybrid closed loop software, Stacey has some thoughts about what she hopes it'll bring to her family's experience.
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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 now as a paperback eBook and audiobook, Learn more at Diabetes dash connections.com
Welcome to one of the minisodes of diabetes connections. I'm your host, Stacey Simms. And I started these shorter episodes this year, just so I could talk a little bit about stuff that interests me. We still have our weekly episodes every week that are longer and more interview based. But these are just little bits of topics one at a time, where I want to kind of share what's on my mind and then hear back from you whether it's in the Facebook group or elsewhere on social media. If you are new, we have a terrific Facebook group. It's diabetes connections, the group, please reach out and join and you can always reach out via email. or other social media I am Stacey at diabetes dash connections calm. And today I want to talk to you about some thoughts on Control IQ, the new hybrid closed loop system from Tandem.
The emails for Control IQ were set to go out this week. So I'm sure there was a lot of online chatter and you know, scrambling for this and did you get your email and that kind of stuff? Did you get your prescription? And do you have it yet? And have you downloaded it? And I thought it would be fun to just take a moment before you know we start sharing our thoughts about Control IQ and trying it you know, just for the record, kind of to get this down. What are my hopes, what are your hopes for Control IQ and really for a lot of these hybrid closed loop systems and before I get into that, for the Hybrid closed loop systems systems. I think that your perspective on this has to depend on when you entered the diabetes community.
I know we have people listening who have been diagnosed for years and years, you know, 50 plus years, 60 plus years. And their perspective is going to be very different than someone whose child perhaps was diagnosed six months ago. So just as a reminder, my perspective is that of a parent whose child was diagnosed 13 years ago, at 23 months, who went seven years with no CGM, because frankly, we didn't we didn't really feel like it was accurate enough to put a second sight on my kid's body. And by age nine, it really became his choice. And then when he chose to do it, I don't think he's taken it off for more than two days. You know, Maybe a beach trip here and there. But we really are huge fans of CGM. And he's had a pump since he was two and a half. So that's my perspective.
Look, I know this is not going to be perfect, right? I mean, all this technology has issues. But what I really hope but I am hoping for is not, you know, perfect numbers, right? I don't think Benny's A1C is going to suddenly go down to 5.8. And that's not my goal. What I'm really hoping from Control IQ. What I'm really hoping we get from Control IQ is less stress, less of a mental burden on both of us, and more freedom for Benny. And let me just talk a little bit about that. Because I if you know me, and you listen to the show, we give him a lot of freedom. But a perfect example is he was at a wrestling tournament. I mean, he's just off crutches recently, but the kid hasn't missed a practice or a meet. He just really likes to go and be part of the team and they put him to work. He's been Great, but he went to a trip where he was catching the bus at school at 6am. They took the kids, this was a Saturday, they took the kids about 45 minutes away. He didn't get home until eight o'clock that night. They feed them on the road. It's a lot of potluck. It's a little bit of fast food, but it's really nice. A lot of parents get together and make homemade stuff. And I pack lunches for Benny too, just because he likes to eat certain things. It's not about diabetes really. and then you know, I try not to hover and check in all day. Obviously, I can see his blood sugar on the Dexcom and he's responsible for remembering and taking care of himself.
And on a lot of these days, and this is this happens really just about every weekend during wrestling season, and usually once during the week they have a match after school to what generally has been happening is he's bolusing after, because he's not sure exactly what he's going to eat, or he forgets, right, and that he's kind of correcting a little bit late. So we haven't had any really crazy highs. I mean, there's one inset issue we had, but he's been kind of floating up to like 210 to 215. And then I'm debating when do I text him because we do have an agreement, we, you know, that is well within my rights to text him, but at the same time, you know, I want to leave him alone. I don't want I don't want to burden him. So it's been a little bit of a struggle and I'm really hoping for his Control IQ evens those numbers out, right, I don't really expect it to take care of you know, if he forgets to bolus and spikes up to 400, which happens every once in a while and he come on, I don't expect it to fix that. But if he's bolusing as he's eating or a little bit after, or he miscalculates carbs, right? I'm really hoping it helps with that. I'm hoping it helps with the excitement spikes and some of the adrenaline spikes from athletics. I don't know what it'll do with that. I'm optimistic but You know, we'll have to see,
What I hear about all the time from people who have done the DIY loops is that they, they don't necessarily have, quote, better control or more in range numbers, because a lot of people who do DIY frankly, I mean, they had really low A1Cs to begin with many of them. I know as you're listening, you're saying not me, okay, I'm just making a generalization stay with me. The point is that they may not see a huge difference in A1C or time in range, but they are seeing better sleep, they are seeing less work, right, more freedom. For Benny, with Control IQ and for everybody with Control IQ, I hope it means less work and less upstairs less mental burden. And for people who do have higher A1Cs, who maybe are newer to pumping or newer to CGM or maybe this is an opportunity for better education. I really hope that those people do see better health and do see better outcomes and do see better outcomes.
I mean, as you listen to this podcast, again, making a generalization Here you are, you know, the top educated people in the diabetes community, not necessarily because of this podcast, but we've done the research. People who listen to this show are extremely well educated, you're seeking out more information, you're in the Facebook groups, you're reading stuff, right, you kind of know what's going on. And if you tuned in to learn about Control IQ, just the fact that you know what it is called, and what it is, means you're better educated than probably, I'm going to throw out a number that I'm making up 80% of people in the diabetes community, community, and those are the folks that if they have access to this technology, which is a whole other thing, story altogether, the cost the access, oh my goodness, the costs the access. I mean, I we must acknowledge that. But if they can get this, those people are going to see huge decreases I think in A1Cs and that's really exciting stuff. Is this a solution? a cure? Of course not. And as I just touched on there, we have bigger issues, the cost of insulin, access to insulin access to this technology, education, education for endocrinologists access to endocrinologists for mostly for adults with type one diabetes, right? I mean, there's so much going on here.
I didn't mean to get off on a tangent, but my expectation for Control IQ is not that we're going to see miracles. We already sleep through the night pretty well. But I'm hoping that he can continue to have the independence that I give him with more time and range with less nagging from me, you know, gosh, in the back of my mind, I'm really thinking about camp later this year. If you're not familiar, Benny goes away to non-diabetes, regular sleepaway camp for a month every year. And he does really well. That's a topic for another time, I probably will do a minisode on camp. But you know, he does run higher for that month. Some of that is our thinking is about safety. But most of that is about he's a kid who's basically responsible. He's a kid. He's basically responsible for his care 24 seven at this camp, and he will often bolus late or forget a correction bolus. I can't wait to see what Control IQ does for him at camp. It's gonna be really exciting.
All right. I know a bunch of you listening are thinking I'm not going to go with Control IQ. I've heard from many people who already see they're going to wait and let it roll out. And then when all the bugs are done, they're going to go ahead and take the plunge themselves. We plan to get it the minute it is available to us. Our endocrinologist, we just saw him at the very beginning of January. He said the prescriptions are in we are all set. So it's possible by the time you hear this, that we already have it and we're using it in Benny's pump, although I doubt it will it will see and I'll post in the Facebook group and I will give a review of course as soon as we possibly can. But man, I'm thrilled to think about this. And if you use another type of insulin pump and you're still listening, you know of course insulin has its own system coming out. Medtronic has a new pump coming out there are more CGM is coming to market. There's gonna be a lot more to talk about, of course when it comes to hybrid closed loops, but we've been waiting for this for a long time, you know, Those loops. But we've been waiting for this for a long time, and I'm so excited to see what it does for Benny.
And you know, Benny would probably be the first to tell you that I am the world's worst diabetes mom. If you'd like to learn more about the book or about me, you can head on over to diabetes dash connections dot com and be sure if you're new especially to check out our extensive archive of shows. You can search by keyword or by subject. We will be back next week with our regular interview longer episodes and those drop on Tuesdays. Beginning This month we have added transcriptions for every episode, and you can see those over at the homepage, just click on the individual episode homepage and scroll down and you will see the text of the episode. A lot of people have been asking for that I'm really excited to provide it to provide it.
Thank you so much for listening. I'm Stacey Simms. I'll see you back here on Tuesday. Until then, be kind to yourself.
Transcribed by https://otter.ai
We're talking about the youngest people with type one diabetes: babies and toddlers. When you can't talk and you're barely eating solid food, the challenges of T1D rise to a new level. Stacey's guest is Pediatric Endocrinologist Henry Rodriguez, the clinical director of the University of South Florida Diabetes Center.
The interview features everything from breast feeding, diluted insulin, pump and CGM use in babies and much more.
In Tell me something good. The other end of the spectrum: celebrating a long life with type 1 - 64 years since diagnosis and going strong.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.
Get the App and listen to Diabetes Connections wherever you go!
Rough episode transcription (please forgive grammar, spelling & punctuation)
Stacey Simms 0:01
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.
This week, we're talking about the youngest people with type one diabetes babies and toddlers. At that age, everything – food, sleep, communication has unique challenges, including what happens when you dose and they won't eat.
Pediatric Endocrinologist Henry Rodriguez is the clinical director of the University of South Florida Diabetes Center. He's actually referring to the older insulins there, NPH and regular not commonly used anymore, but that situation certainly still happens. And we talked about everything from diluted insulin, breastfeeding and CGM use
In Tell me something good. The other end of the spectrum celebrating a long life with type 164 years since diagnosis and going strong.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.
You’re listening to Diabetes Connections with Stacey Simms.
Stacey Simms 1:42
Welcome to another week of the show. I'm your host Stacey Simms. So glad to have you along. And a special welcome to new listeners from the Greater Western Carolinas Dhapter of JDRF. I attended that summit over the weekend. So hello to anybody who found out about us there and is tuning in for the first time. And hello to all the moms and dads of little ones. You know, this is an episode focusing on babies and toddlers with type one that I've actually been trying to do for a very long time. It is hard to find an endocrinologist who really wants to come on and talk about this. I don't know why, but it's taken a while. So I'm so happy that Dr. Rodriguez decided to spend some time with us. Now as you know, if you're a longtime listener, the subject of babies and toddlers with type one is very near and dear to me. My son was diagnosed right before he turned two. So I want to tell you right now, this is a longer episode. But please stay with it. I mean, come and go. as you please, we will be here waiting for you. You can certainly pause and come back. It's a longer interview.
But I wanted to really take advantage of having a person who could talk about this stuff and the interview transcription is available at the episode homepage, go to diabetes dash connections. com, click on this episode, and you will see the transcription just a little bit down the screen there. That's new for 2020 for the show.
I know we're well into to January at this point, but my house is finally a little bit back to how normal is now I guess because my daughter just went back to college. She's been home for about a month which was fabulous, but she was definitely ready to go back to school and I don't know what I'm going to see her again and maybe just until spring break. Oh my goodness. And of course Benny is at regular high school so he's been back for a while now too.
Very happy to have a new sponsor this year! Diabetes Connections is now brought to you by One Drop, and I spoke to the people at One Drop, and I was really impressed at how much they get diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an Dult and 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 dash connections calm and click on the One Drop logo.
My guest this week is Dr. Henry Rodriguez, a pediatric endo and the clinical director of the University of South Florida Diabetes Center. As Dr. Rodriguez confirms, as you'll hear, more younger people are being diagnosed with type one, a trend that seems to have started about 15 to 20 years ago, but there's not a lot of easily accessible information to help parents in this age group. I will link up some information in the show notes on the episode homepage, including a couple of Facebook groups I do recommend for parents of very young children. But when Benny was diagnosed, we really didn't know anybody with a child that young. And I felt like we were making up a lot of it as we went along. Now the good news there is that he's fine, although I certainly made a lot of mistakes. But when you're talking about babies and you real six months old, one year old, it's a totally different ballgame. So if you are new to the show, I just want to warn you. I think I talked more in this interview than I usually do. definitely get on my soapbox a few times, and you'll hear me pushing my opinions and pushing some of them on to Dr. Roger. Yes. And he pushes back a couple of times, which is great. I feel very strongly about this age group. I mean, this is my wheelhouse, but of course, I am not a doctor. So here is my interview with Dr. Henry Rodriguez.
Stacey Simms 0:02
Dr. Rodriguez, thank you so much for talking to me. I'll be honest, this is an issue I've been trying to cover for a long time. And I'm thrilled that we're finally getting to talk about it. So thanks for coming on.
Dr. Henry Rodriguez 0:14
Oh, it's a pleasure.
Stacey Simms 0:15
I'm not even sure where to start. I mean, between my personal experience, and then talking to so many moms of babies and toddlers, let me maybe back up and ask you, as a pediatric endocrinologist when somebody comes into your office or you meet them at the hospital, and they have a child under the age of two, where do you go? What do you tell them? How do you start?
Dr. Henry Rodriguez 0:39
Well, I think, you know, we certainly start with the basics in terms of, you know, we feel the etiology of Type One Diabetes is how we think, you know, develops. I think what we end up doing these conditions many times is, is you know, first addressing you know, I think, whatever challenges diagnosed with Type One Diabetes, even though we fully appreciate it providers that are treatable. You know, there's that sense of loss and morning. So I think acknowledging that, and then we try to really focus on, you know, the fact that, that it is a treatable condition. It is challenging, there is no question that life is going to be different as folks at home, but but it's it's manageable. And, you know, in our center, we have the luxury of a multidisciplinary team. And we're all about supporting that family, you know, is is the case, I think we fully realized that. I think there are two times of life, at least in the pediatric age group, that are particularly challenging. It's in the very young children. And then it's the children they get diagnosed around the time of adolescence. And so for the very young child, the bottom line is that I think it is extremely important that we tailor the therapy to the patient. It's true across the board, but I think particularly with the youngest ones,
Stacey Simms 2:00
When you're talking about the youngest ones, I think as we go through this interview, we will kind of section it because obviously, there's a difference between a six month old and a 16 month old, you know, and a three year old. But my personal experience was was interesting. So when my son was diagnosed, our pediatrician he was he was not yet to it was about five to six weeks before he turned two. She said, Bring him in. It sounds like type one diabetes, but he's too young. I've never had a case of someone under the age of two. So bring him in. And let's roll it out. And luckily, you know, we did we brought him in. I mean, unluckily, we rolled it in, obviously. But is that something that was either common at that time, which is 13 years ago? Does it still happen that people think you can't possibly have type one if you're under a certain age?
Dr. Henry Rodriguez 2:44
No, no, I think you know, what we encounter typically is at the other end of the spectrum, it's, it's adults that come in and the assumption is, well, you're an adult, you obviously have type two diabetes, you couldn't possibly have type one. But I will tell you that You know, and we we actually I oversee both adult and pediatric providers at our center. And, you know, historically, pediatric endocrinologist, pediatricians will assume it's type one until proven otherwise. And on the adult side, it's the opposite. So, you know, I think we are in in less danger of mismanaging, so to speak a young child because, you know, our, our kind of default is to treat those children with insulin and then, you know, figure out the rest afterwards. elevated blood sugars, you know, can can occur transiently in a child who's Ill know in the midst of stress of illness and we can kind of say, well, Mom, okay, well, let's just see how how things don't obviously if you have a child that has an extremely high blood sugar that has, you know, positive ketones, possibly acidosis well, then then, you know, you know it's insulin deficiency and So you proceed in that regard. But you know, for a child that comes in with, let's say RSV pneumonia and you get a few older blood sugars will let that slide, so to speak. But, but for sustained high blood sugars, you know, we always resort to insulin therapy.
Stacey Simms 4:17
Okay, so it was just maybe my pediatricians personal experience hadn't borne that out. It wasn't some something common. And before I move on from that, is it. I had heard anecdotally, again, that there are more cases of younger children with type one in the past 10 to 15 years than there were, say 30 or 40 years ago. It's true.
Dr. Henry Rodriguez 4:38
Yeah. Yes, it is true. Unfortunately, we know that overall, the incidence of Type One Diabetes is increasing. And that increase is really most affected children less than five years of age. I should mention before we move on, you know, and we will come into the youngest individuals as you said, but for children less than six months of age, one thing that always factors into the equation, particularly if there's any kind of, you know, multiple family members that are affected by quote type one diabetes, we also have to think about monogenic diabetes. So those are individuals who have a genetic mutation that has affected the machinery as it were, that's necessary to monitor the blood glucose to you know, make the insulin, store the insulin, release the insulin, all those things. Now, it's far less common. But we have to think about those things in the youngest individual.
Stacey Simms 5:42
And I will say will, as you listen, we will link up information about monitor genetics, diabetes in the show notes, you'll can find it on the website, and I'm actually doing a show in just a couple of weeks with a family that thought the child had type one thought the parent had type one, but it turned out it was monitored now. So we'll be talking more about that in a future episode but more information because as we're talking about the youngest kids here, that is something you absolutely have to keep in mind. Alright, so let's talk practical, because most of the questions that I have taken from other parents, and then I had myself I remember when my son was diagnosed, we're about precision of dosing. I mean, it's so hard, right? I mean, when baby was diagnosed, he was he was a bigger kid, luckily, so we were not using diluted insulin, which I'll ask about, but we were drawing up quarter units, which are not measurable. They don't make up you know, there's no lines for quarter units. At least there weren't a syringe. There wasn't even a half unit pen at that time. How do you advise people to do these itty bitty teeny weeny doses for kids?
Dr. Henry Rodriguez 6:49
Honestly, I am so mentioned we were get to it, but I'm not a great fan of diluted in so I think you can do that. I perhaps you could accuse me of a bit of paranoia, but I'm always concerned that they're there, either, you know, less likely on the part of the period but, you know, another caretakers so forth an error at that level of the pharmacy. I'm always concerned when when you dilute insulin, think about it.
Stacey Simms 7:16
I'm sorry, I cut you off. I got excited. Yeah, I mean,
Dr. Henry Rodriguez 7:18
it, you know, if you're diluting the insulin tenfold and for some reason, you you make an error and you develop those, you deliver the full strength insulin. That's 10 times the dose you had intended giving. So that that is as I said, there may be a little paranoia on my part. I tried to get away from that. I, I will tell you, as you mentioned that, you know, even with the syringes, there are now insulin syringes that half half unit increments. And when you say you're going to measure a quarter unit, you have to understand that you're getting between zero and you're not giving the unit units
Stacey Simms 7:55
was not my husband's quarter unit. We knew that we were just trying to Bad tech.
Dr. Henry Rodriguez 8:01
But I think that's where I generally move towards, in fairly rapid progression. Move towards insulin pump therapy.
Stacey Simms 8:12
Okay, wait, but before we do, because there jumped you jumped? Right? Let's Let's continue that because I do think it's worth talking about we never used it. I didn't even know it was an option at that time. But when I see people talk about it, they seem very enthusiastic about it before we go any further and I'm happy to, as you said, on the one hand is the paranoia on the other end of the parents who do think it works well. But let's start with the facts. What is it? I mean, you're not diluting insulin at home, are you a pharmacy? Oh, my goodness.
Dr. Henry Rodriguez 8:39
So you can go Yeah, you can go one of two ways. I mean, the manufacturers do. Provide them you can purchase a diluent it's essentially the solution that insulin is prepared in and you you can dilute that insolent. Some folks do that for is, again you can you can segue to off of the pump their baby deal with the pump as well. But, you know, you dilute the insulin and it's it's something that my preference if you're going to go that route is to get a reliable pharmacist to do that for you. But there are some individuals that do it at home.
Stacey Simms 9:24
And okay, so this sounds like a very foolish question, but I don't we're just at the beginning here. How do you do it? I mean, do you literally take a regular vial of insulin and then dilute it at home with you pull it out? You put I try to think of how I would do that.
Dr. Henry Rodriguez 9:39
Well, I mean, you have a while of the diluent. And then you introduce however many units of insulin internet, we used to do this back in the old days request from our therapy, you know, we could tailor the concentration to provide a volume that was reasonable to inject it sir doable, but, you know, we, I generally prefer to go with simpler, not never going to be foolproof, but making it less likely that an error is going to occur.
Stacey Simms 10:17
I know that people really have good success with it, but it would make me very nervous as
Dr. Henry Rodriguez 10:24
I share that
Stacey Simms 10:26
was just a go. I mean, insulin we know has a shelf life, so to speak, you know, out of the refrigerator for 28 days and in the refrigerator for the date that's on the packaging, just diluting it change that.
Dr. Henry Rodriguez 10:39
It shouldn't but obviously, as you indicated, I mean, you want to do it, and then this sterile fashion as possible. So you know, it I, and again, I'm stating the obvious here, but, you know, we think 28 days, it's not because on the 29th day, the insulin no longer functions, it degrades over time. And considering particularly when you're dealing with small doses like this, and considering the accuracy that we try to achieve with regards to dosing for the individual carbohydrates for the correction doses, you if if on day 45, your insulin is 90% as effective as it was in day one. That's not ideal. So that's why we generally encourage people to rotate out the vial over the 10 every 28 days now, in a child that isn't using very much insulin, you know that that means you're disposing of a lot of insulin. And so you know, there is a certain level of waste there. What we typically try to do is, you know, your pens hold 300 units, your vials hold a full thousand units. I think, if you're looking at it from an economical standpoint, even if you cannot use the pen to the The video says you can draw from the pen with a syringe. However, I think it's incredibly important that folks understand that once you've done that with a pen, you're going to potentially introduce error to any insulin you deliver with the pen mechanism. In other words, you're changing the volume within that cartridge in such a way that if you then turn around and use that pen, the way it's intended, you run the risk of inaccuracies in the dosing. So we always tell folks, once you've drawn from a pen with a syringe don't revert to using that pen has as an injection device by itself.
Stacey Simms 12:37
Yeah, yeah, we do that we actually pulled insulin out sometimes to using the pump from a pen. But then you cannot use that pen to inject as a pen. That's it. It's done. If now it's just a big dumb vial. You can't use it anymore.
Dr. Henry Rodriguez 12:50
It's a little it's a little
Stacey Simms 12:51
it's a little dump file. Um, okay. You mentioned instead of diluted insulin, that you would prefer the precision of an insulin pump. And this isn't an editorial statement, but I'm just thinking when I remember when my son was on the insulin pump, he was two and a half. And I see these babies that are on insulin pumps, and the babies are so teeny tiny, you know, and the pumps are so large, this isn't really a medical question. But they really do okay on them.
Dr. Henry Rodriguez 13:20
They do they, I mean, you you make allowances I mean, if you think about So, so here is where your choice of pub is important. You know, the easiest pump is is the only pot I mean in terms of educating people how to use it, in terms of placing it and so forth. The problem is is you appreciate the pod takes up quite a bit real estate, when you compare it with a tip you know, and otherwise traditional infusions site. So that comes into play as well. I mean, typically you're placing the pod either on the fly of an infant or a box and, you know, changing diapers and so forth that then becomes a potential issue there. So it is not without its difficulties, but it does allow you for more flexibility for more precision in insulin dosing. And if you think about the youngest one, let's let's take an infant who's breastfeeding while they're feeding every two hours, you know, get first of all, that's a lot of injections. If you don't go with, you know, I generally will prefer to provide insulin more physiologically, if the child is continuing to make some insulin on their own might be able to use a long acting insulin to kind of cover things over the course of the day. But you're not going to achieve the degree of control that most folks would really see as, as as a goal with just money Jessica, this one you can do intermediate acting insulins, but then you You're really requiring that you have regimented, you know, caloric intake, carbohydrate intake. And in a very young child, or an instance of that better eat type in, I think it's nearly impossible to ensure that.
Stacey Simms 15:19
Well, you you brought up breastfeeding, which is on the list because I see these moms. Again, my son was a little bit older. I did breastfeed, but it was done by the time he was 23 months old. But a lot of these moms are breastfeeding their kids with Type One Diabetes, which I think is unbelievably challenging, because we don't know what they're actually eating. Even without diabetes, we worry about that. So what do you tell moms who really want to continue breastfeeding? You mentioned a couple of different options there. But do you just check a billion times? I mean, how do you do it?
Dr. Henry Rodriguez 15:54
Well, I again, not that to put more more hardware, so to speak on this little one, but You know, this is where continuous glucose monitor, you know, I think is a lifesaver be provides you with a lot of data and you know, you could certainly, and decimal changes over time, but you can certainly have the breast milk analyzed and you can you can look at the carbohydrate content and so forth, but you still don't know what volume that child is going to take. So, it is a bit of trial and error, quite honestly, I mean, so much as type one diabetes management is, but it really comes down to well, you know, pro breastfeeding session, you know, the blood sugar typically goes up x, you know, we'll try a little bit of insulin and we'll see how that goes. And it really becomes trial and error and this is where, you know, it is it is so much a partnership between the diabetes care provider and the parents. Many times and the primarily being mom, but you know, it is trial and error. We always OPT or The default will be, you know, we want to be really cognizant of the risk for low blood sugars. So we don't want to over those will likely undergoes, you know, until not that many years ago, you know, we as as a pediatric endocrinology community would say, Well, you know, it's a very it's very young child, we might tolerate, you know, a one sees of nine, in some cases 10%. Now, I think nowadays, with the more rapid acting insulin analogs with the possibility of insulin pump therapy with continuous glucose monitoring, we're all those things help reassure us and allow us to be more aggressive, so to speak. So we don't have infants with blood sugars that are routinely elevated, you know, once you cross that threshold of 180, or 200. Keep in mind that that child is is going to be urinating more because they're losing glucose in the urine, and so That creates challenges in terms of keeping them hydrated. And certainly you've got to get more calories into them because they're losing them. And so, you know, it definitely is a complicated process.
Stacey Simms 18:12
All right, we have to stop you there. Because I have to go back. I've written a bunch of notes, and we're going to follow up on everything you've said. But there's two really dumb questions I do have to ask before we move on. And the first is, oh, well, hang on. So sending the breast milk out to be analyzed. Who is analyzing their breast milk? No, do I? How do you mean, how do you do it? Is that something people should
Dr. Henry Rodriguez 18:34
do? Well, I think it's probably I mean, yeah, you can have that done.
Stacey Simms 18:43
Who does that? Well Google it and find a bunch of services that give me the calorie count.
Dr. Henry Rodriguez 18:49
No, no, no, I think I think you get bored with your healthcare provider and you can send it out to a laboratory and have that done. Now, I and I'm not saying that that absolutely, positively has I think, you know, in many cases, that's probably the healthcare provider, the dermatologist, trying to get a better handle on things, you know, and it makes the trial and error perhaps a little bit easier. But, you know, breast milk does change and it's it's consistency. And it's caloric content and so forth, over over, you know, the period that the child is breastfeeding. So it's not foolproof, it's not as if you know, you've got a nutrition label that tells you exactly what what the what the
makeup is the breast milk fascinating.
Stacey Simms 19:41
And then I guess that would be a lot of help for pumping breast milk as well. Right.
Dr. Henry Rodriguez 19:48
Exactly, exactly. So, you know, for and again, as a pediatrician, we obviously advocate for breastfeeding. breastfeeding is best and pumping does allow You particularly for, you know, a child that maybe is having some challenges in terms of feeding on a routine basis or even, you know, tolerating the large volume and so forth, you know, being able to quantitate that I think goes a long way and making it easier.
Stacey Simms 20:20
So, you mentioned that in the past, you would be okay, or you tell parents, it's very reassuring to have an agency of nine or 10 at this very young age. And I assume that's because the alternative was so dangerous. You know, you don't want the kids to be going low without CGM in the past and without the fast acting insulin is just so difficult. But I've also heard that in the past, it was thought that there was some kind of protection when kids were very little that the highs kind of didn't matter as much was that am I correct in thinking I heard that somewhere. And is there any truth to it?
Dr. Henry Rodriguez 20:50
Yeah, no, no, no, you are correct. And so the way I used to think of it as well, people didn't think that you know, with regards to complications, and and You know, serious consequences of high blood sugars, that that clock didn't start ticking until after puberty? To which I think that's pretty ridiculous. Unfortunately, over the course of my career, I have seen very young adults that, that, you know, we're poorly controlled. And in young adulthood, they're they're suffering the ravages of high blood sugars there. They've got renal impairment, they're there, they're having issues with their site and so forth. That that, we can't do that. And in as you've indicated, I think this is where continuous glucose monitoring allows us to be far more aggressive. No longer do I have to have a parent check twice a night every night to make sure that that child isn't having low blood sugars overnight. And so as a consequence, I can be more aggressive and say, Well, no, we don't have to have that baby. Go to sleep with a blood sugar of 200. Because we're worried about lows, we can target something far lower because we know that we're going to be able to, in the case of the dex conference that it will alarm that will, it will, you know, notify the parent that, that there's an impending blood sugar and you can intervene before the top actually goes well,
Stacey Simms 22:22
before we go on, I just want to be clear on and maybe this is a bit more of an editorial statement, but I think you'll back me up when you're saying that the concern about babies and toddlers, you know, going over 200, because you know, we're all looking at time and range. Now those of us were lucky enough to use CGM, which is really 70 or 80 to 180. I don't want parents who are maybe newer diagnosed, to feel like their kids are going to die or go blind if they hit 200. Because obviously, you don't want to stay there. You don't want to stay at 300. But can you give us a little reassurance that the concern there is just on a regular basis, you're worried about hydration, you're worried about long term But if your child hits 200 it's not the end of the world. I just worry about. I don't know. All right, I'll let you talk. Sorry.
Dr. Henry Rodriguez 23:11
No, no, no, no, I really do appreciate you pointing that out. Because there are some parents that, you know, I think sometimes we, we, we, we focus on, you know, this is the ideal. I think we're actually doing much better with CGM now. But, you know, it used to be that the gold standard was, you know, up a post meal blood sugar that doesn't go over 180. And you have to appreciate that even somebody that doesn't have diabetes does have a rise in their blood sugar after meal, but it typically doesn't go above you know, certainly 140. So, you know, it your point i think is well taken. We don't want the parent of any child or a particularly young child to think oh my lord, you know, they've they've had Our blood sugar's of 230. Over the last week, horrible things are going to happen. That That certainly is not the case. We do for the reasons that you've raised, particularly with regards to hydration, and just overall longer term risk. We do want to minimize high blood sugars, but you know that the occasional blood sugar over, you know, 200 is not going to have lasting effects on that child.
Stacey Simms 24:34
All right. Which brings us to another topic that I think is really important for this is more toddlers than babies, but once they start eating, right, we all know that pre bola Singh is the gold standard you're supposed to figure out, you know how far in advance when my son was younger, we could bolus ahead maybe 10 minutes. Now we can pre bolus 20 even 30 minutes for some meals. He's a big kid. You know, it's differently it's a lot different have a 15 year old than a 23 month old But that also can be very complicated for parents who don't know what the heck they're toddlers going to eat. I'm curious what you counsel people who say, you know, how do I do this? My kid throws food on the floor, or he will only eat a cookie, or we sit down to eat and he takes two hours to eat breakfast, you know, how do you I have my own feelings? But I'm curious as a as a mom, but as a medical professional, what you tell people?
Dr. Henry Rodriguez 25:24
Yeah, so, okay. Management of Type One Diabetes is all about compromise. I think back to you know, early in my career in diabetes is when the first rapid acting insulin came came came on board, and that that was life priority walk. And so prior to that, you know, the recommendation would human regular insulin was to administer it 30 minutes before before eating. And so I, you know, I imagined the parents of a very young child toddler, where they they did what they were told and then The child refuses to eat whatever they put in front of them. And, you know, at that point, you know, panic sets in and is you know, children learn very quickly. And those children many times and hold out for whatever it is that they want it. And so you can imagine the the parent getting out the, the ice cream or, or the chocolate milk or whatever it is little Johnny wants little Johnny's going to get because the consequences otherwise is that that child is going to have, you know, potentially a serious low blood sugar. So the rapid insulin analogs allowed us then to say, Well, you know, human log Nova log a Pedro have an onset of action of bout twice as fast as regular insulin. And so, understanding that it wasn't perfect, but it was reasonable to say well, if you really not sure that that child is going to eat you can give the influence after they're done, now, if they take an hour to eat, that's going to be a problem because you're going to get a significant blood sugar rise. Before that insulin actually starts working. Keep in mind that even your rapid acting insulin analogs, they don't peak for an hour to hour and a half. So, if you're waiting to give the insulin, you know, after you eat, there's going to be a significant rise in blood sugar before it comes down. And, you know, this is where, again, you know, you're you're now for lack of a better term, ultra rapid acting insulin a logs that are now coming to the forefront or about twice as fast as your human log, no log in a Phaedra. And so I think, from that perspective, there's hope that we're not going to suffer from, you know, higher blood sugars just because we're giving insulin beforehand. You know, we're the one ultra Rapid acting insulin and all that is currently available is as part of its fat, the dashboard or fast. And that's made by Millville. I know that we're actually doing one study here at our center with the ultra rapid form of human walk. And so it's interesting because at least in the adult studies, that insulin given up to 20 minutes after the meal, worked about as well as controlling the blood sugar is giving, you know, ordinary life pro human log beforehand. That's great. So I think, yeah, absolutely. So I again, it's allowing us to be more aggressive and limiting the rise in blood sugar after a meal, even if it's given afterwards.
Stacey Simms 28:48
Yeah, and I will admit, we did not have a CGM until my son was nine years old. And we just came up before that, but frankly, I didn't think it was accurate enough at the time for what we needed, and he didn't want to Second Sight, told the story before. So we bolused after until he was probably six years old, and not having to use glucose monitor, obviously, you're not seeing the rise of blood sugar, because to two hours later, he's fine. But our agencies were always great. You know, I really feel like it didn't hurt him, for whatever reason to do it that way. He's also though, you know, he was a healthy eater, he did not take an hour and a half to eat a meal, he probably took three seconds to eat his food. So it doesn't really like we were waiting that long. But but it really can be done. And I'll be honest with you, Dr. I really feel like and this is a little soapbox moment, which I may take out, we'll see. But this is a little soapbox moment. I just feel like you can you can create disordered eating, honestly, if you're not careful. You know, and if your kid starts saying things like I'm going to only the ice cream or I'm going to hold out for the desert. You know, there's really and my heart goes out to parents who are so concerned about never rising over. 120 or 140? I see these parents, Facebook groups all the time. And it's like, oh my gosh, your kids. I mean, I hate to say it, your kids can have diabetes. For a long time. I hope there's a cure. But I mean, it's very difficult. So I appreciate you saying that. I appreciate you giving some hope fest directing insolence. But just permission to bowl this after is amazing. But also, you mentioned if they're gonna eat for an hour, again, with an insulin pump, it's so helpful because you can maybe bolus right there's there's 25 carbs in this plate. I'm going to get five carbs up front. I'm going to give five carbs five writes in right I mean, you can do it as they go to which is fabulous.
Dr. Henry Rodriguez 30:40
Now, I think if I may digress for a moment, I think, you know, I'm sure you've heard the term brutal diabetes. Yes. And it and so I really on in my career, and admittedly erroneously assumed that was a non adherent patient. In other words, their blood sugar's were far more difficult to control because they weren't doing doing what we told them as their providers to do. And over the years, I've come to appreciate that even though I still don't like the term, type one diabetes, not Type One Diabetes for everyone. We've done so much research over the last few years. There are individuals that have had type one diabetes, you know, that the gold medalist from Johnson that continue to make insulin years and years later and so for individuals that have you know, their their pancreas is still making some insulin. It it's far easier for them to have more stable blood sugars, as opposed to someone who's totally dependent on what we refer to is exhaustion is rejected insulin by a pump or or needle. It's a different animal. And so, you know, if you have an individual that is, if you think about has a prolonged honeymoon period, they're making insulin summons, when not enough in the background kind of takes the edge off. If you think about it, not only, you know, in that honeymoon period, not only are the blood sugars that are controlled on the top end, but think about the risk for low blood sugars, it's less because, for example, if you're making 50% of the insulin you need, and you're going low, you have the ability to turn off that 50%, at least in theory, right, so that your body can respond by making less insulin, and therefore you have less risk for low blood sugar. So, you know, I think I've grown somewhat wiser over the years and in really come to appreciate that. You know, it just because someone has erratic blood sugars, it doesn't mean that they're not following the management plan.
Stacey Simms 32:58
Absolutely. And then conversely, I will say, perhaps I was on my high horse. If someone has a good experience, it doesn't mean that's because they're doing everything right. I will also point out that for one some magical reason, my son does not get ketones easily at all. And it's been it's been a remarkable because it has, I mean, knock on wood, all I can everything I can knock on. But you know, he just doesn't develop that he's been sick just like every other kid. He's been high for days. I mean, he's a teenager, and he hasn't developed large ketones that I ever remember where I have a friend whose kid hits to 50 for two hours, and he's got large ketones. So it's a great reminder that everyone's experience really is different. I appreciate that. Let's just talk a little bit you mentioned the honeymoon period. I have heard again, this is a lot of I've heard Can you confirm but I have heard that when children get type one it is very acute, and almost always the honeymoon period is either short or you know the insulin producing cells are just gone. Is that true?
Dr. Henry Rodriguez 34:05
This is one of those areas. So you're probably familiar with Type One Diabetes trauma. And before that it was the diabetes prevention trial. So we had been screening family members of individuals with Type One Diabetes, to determine, really, you know, who's at greatest risk. And then in some cases, we've been doing oral glucose tolerance test, really, if you think about it, just kind of testing your pancreas to see if they can make enough insulin to keep the blood sugar in normal range, even with lots of sugar coming in all at once. And what we found is that, you know, the progression first tends to be more late and slower in older individuals and it tends to be most aggressive than the youngest, which is a little bit disheartening, but but it is what it is. And so there was a publication came out that was jointly authored by the endocrine society jdrf and the ADA, and this came out, don't quote me on this, you will have to double check it, but I think it was December of 20 16%. I'll look it up. And, and based upon and I can provide the reference later on, but based upon largely all the individuals that we screened, and trauma, and our follow up of them, what we have determined is that type one diabetes, you don't have type one diabetes, when you end up with high blood sugar and in the emergency room, we are typical symptoms of urinating a lot, drinking lot, perhaps losing weight without trying. Those are the classic triad of symptoms that we that we associate with gosh, you have type one diabetes, we can and we have intermit, tested up to five different antibodies that we can measure in the bloodstream, that are a signal that the immune system has begun to Identify the cells in the pancreas that make insulin the beta cells as quote for it, and then the immune system makes antibodies that can target those cells. We can measure up to five, what we've determined is in individuals that have two or more, their lifetime risk of developing type one diabetes is nearly 100%. So that's where it's now accepted that there's a staging system for type one diabetes. Stage One is when you have an antibody, at least lashley, excuse me, two antibodies of the five. Stage Two is when you have those two antibodies, and on that oral glucose tolerance test, the stress test for the islet cells that they don't rise to a level but the standard for diagnosing Type One Diabetes based on the test is a two hour level it's 200 milligrams per deciliter or more. So you haven't reached that threshold, but you're above the 140 So you're in that gray zone. So that's what we refer to as glucose intolerance. It basically tells us that the beta cells are starting to fail, so to speak. And so that's stage two. Stage Three is when you have classic symptoms, when you generally present with clinical symptoms, and then stage four, or individuals that have established diabetes for an extended period of time. So So to answer your question, the auto immune process occurs in the background. And it's, you know, we are as part of research studies, primarily trauma screening individually. I'm sorry, there are some religious studies in Europe as well. But we're screening individuals that we know are a great risk or greater risk because having a family member now, if I can go off a little bit for a moment, keep in mind that the vast majority of people that get diagnosed with Type One Diabetes do not have a family member. Okay. So Somewhere around 90 95%. But for those individuals that do have a family member, their relative risk is about 15 fold greater. And you might say, well, gosh, that sounds like, you know, that's terrible, that's really high. What you're what you're basically looking at is a relative risk of about 5%. In other words, for every 100 individuals that we screen that has a family member with type one, only five end up being in a body positive. If you were to look at that in the general population, it's maybe two or 3000, as opposed to 500. So the risk is greater in family members, but the majority of individuals who do get diagnosed with Type One Diabetes, there is no family history.
Stacey Simms 38:46
It's so interesting, and that that was us. You know, we had no family history, like so many people, as you said, but then three years later, my cousin was diagnosed. So now we're thinking, hmm, you know, is it something is it because we won't know I mean, you really I guess we won't know until the next generation perhaps, but both kids have gone through. Several of us have gone through trial net. So, you know, nobody else has any markers. So we shall see. But it's a great idea. I know it's you know, it's funny because it is great. And then you have to be honest with you. I my first reaction was guilt. I mean, I guilty that I didn't have it, and I would have felt guilty if I did have it. Oh, that's a different show. Okay, so we're gonna Yeah, exactly. Um, I got a really interesting question that I wanted to make sure to address to you and it was about food and I know you know, you maybe I could have a nutritionist on and go into this in a more specialized way. But the question was, sometimes especially with kids, you know, we get these these free snacks. You know, you can have I remember my son was anything under 10 carbs was a free snack. But the question was low carb snacks are tough for infants and toddlers, because at this age group, things like nuts and raw vegetables. are choking hazard. Right? Any ideas or comments on low carb snacks?
Dr. Henry Rodriguez 40:06
Their challenge? Hey, if you think about it even, you know, I mean, breast milk, as we mentioned, or you know, regular milk, I mean that there are some carbohydrates there. I think, you know, it all comes down to, you know, as we said, it's a compromise, and you have to do your best I I have a number of patients who, we don't recommend this and younger children by any means, but there are adults, as you're probably aware, that find that their blood glucose control is far better if they really restrict your carbohydrates. Okay. And again, I want to emphasize again and children, we generally discourage that because children need a balanced diet in order to grow and develop, but adults will find in some cases, they severely restrict your carbohydrates. So we're talking about 15 or 20 grants in an entire day. Now, you might say, well do they need it? Certainly the basal insulin, you need that regardless. But for those individuals, we we focus on the protein intake, because protein will raise your blood sugar not nearly to the degree that carbohydrates do. But you need some insulin to cover that, that glucose rises that can occur with the increase with with intake of protein. So in the absence of carbohydrate, we look at dosing for protein. But the short answer to your question is, you know, it's going to depend on the age of the child, as you said, and youngest children, you don't want to give them foods that they may choke on. You should certainly make snacks with almond flour and things like that, where you know, you don't have that choking hazard. I think there are a lot more options out there now than there were in the past.
Stacey Simms 41:55
Yeah, another question I got was about communication. Because an oh my gosh, this was so difficult for us. You know, when you have an older child, they can tell you kind of how they're feeling even if they don't have all of the hypoglycemia awareness and they're not really sure how they feel. When you have a baby, they can't I mean, my son couldn't say diabetes. And how do you talk to parents about I remember my biggest question was, what is he napping? Is he low and passing out? You know, we were just checking him against the gym can be very helpful, but not everybody's gonna have one. You know, what do you eat? But
Dr. Henry Rodriguez 42:31
yeah, so that particular instance more and more. We try to get that child on the CGM as soon as we can. And we will we will go to bat for that family and we will try to get it covered through the insurance will find a way because otherwise, you know, I parents are sleep deprived. You're the monitoring that child overnight, and all hours. And so I think continuous glucose monitoring in that Keith is almost decentral. I mean, we we're at the point now where the devices are accurate enough. Certainly, we're well beyond the stage where the FDA said when they were first introduced that, you know, you couldn't do any insulin dosing based on the CGM reading. So we know that they're accurate. You know, we always double check the blood glucose if we're concerned, but I think it, it brings so much value that I really strongly advocate for trying every possible means to get that young child on a continuous glucose monitor.
Stacey Simms 43:40
And I'm, I'm sure if my son was diagnosed at that age today, I would push for it as well. But I do want to ask you one thing before I let you go here, you know, you said parents are sleep deprived. I don't know if you're aware you probably are. That even with CGM, and I actually think again editorial in part because of it, that more parents are more sleep deprived. Because they cannot stop looking at the numbers. And it's not only
Dr. Henry Rodriguez 44:05
to their self well,
Stacey Simms 44:07
please, but you know, you have your alarm set, but people either don't trust it, or they're so worried. Or On the flip side, as we mentioned earlier, they've got their higher alarm set to 125. So they're not sleeping even with CGM. Right you do about that? How do we balance this amazing technology that is supposed to give us less fear with this odd? I don't know if it's social media phenomenon, or what's happened in the last five years, where there is almost more fear, in a way,
Dr. Henry Rodriguez 44:35
right. So I think it really is a matter of education. And so I think that's where, you know, in some cases, you may be talking about maybe meeting with a psychologist to address those fears, but, but I always tell families, you know, I never tell a parent that they should not check if they feel they need to check. But I do tell them that I would like them to get to a place where they feel comfortable sleeping overnight, and not having to look continuously. And so that means, you know, ongoing communication with with that family and working with their diabetes care team to get them to a point where they feel comfortable, that's critically important. Otherwise, you know, all Type One Diabetes is stressful, I don't need to tell you that. But But getting folks to the place where, you know, they feel that it's less of a burden, and more more of a benefit of a tool that that will allow them to, to, you know, not not worry so much. You know, we're not at the point now, where we have closed loop systems, unfortunately, we're getting there, right. But if you think about it, even with a closed loop system, I can't tell you. It's funny. I've got patients now that have been on continuous glucose monitoring. Almost At the time they were diagnosed. And it was it was telling to me because I had a patient say, Well, what did folks do before there was CGM? It's, it's really interesting. But But I will tell you not to put all the blame on the adolescence. But you know, I said I had all this and patients that for whatever reason, you know, their CGM, either they run out of supplies or, you know, as you as you mature, know, a couple weekends ago, you know, there was lots of connectivity receivers and still work, but, but at any rate, they somehow forget that they have the ability to poke their fingers and use a traditional glucose monitor. So, yeah, yeah, it's a challenge. But even when you have a closed loop system, you know, influence being delivered under the skin, you're dependent upon that little Kameelah that sits under the skin. So one of the things that I really, really focus on is, you know, kind of worst case scenario. So, if don't change your site right before you go to bed, you want to make sure that you have the ability to observe you with a CGM or do a blood sugar reject, you know, an hour to after you set aside change, you know, As matter of routine, so that you know that the candle is in place that is, you know, the insulin being delivered and so forth. You we always have to come back to basics. If you have a closed loop system, and there's an interruption in insulin delivery, you need to be aware. And so I think those are some basic skills that that folks will have to still master even when we have closed systems.
Stacey Simms 47:28
Yeah, that's at any age too. That's great advice. Alright, so let me ask you one more question here. Before we wrap this up, you are a pediatric endo. You've seen kids from infant ages, you said and you do see some young adults. So what's it like for you to see somebody who was diagnosed as a toddler or a baby? grow up with type one? I'm sure you've had patients. I mean, we've been seeing the same endo for 13 years and he's seen my son from a pacifier. I mean, my son would be mortified, but from a pacifier in diapers to now he's got his driver's permit. You know, what was it like for you? Watch these kids grow up.
Dr. Henry Rodriguez 48:02
It's inspiring. And actually, I, it's funny, you should mention that. So I've been at the University of South Florida now for nine years. And there's a patient that I saw at the time of diagnosis when I was in Indiana. And, you know, we both ended up moving down to this area. And so it's a young lady who's now a freshman in college, and I saw me she was diagnosed at five years of age, and, and she's just phenomenal. You know, it really is a testament to her to her, her family. You know, it's, it's funny. People ask me, and for years, they've asked me, Well, how do you how do you end up in diabetes? And I used to say that I don't have a personal connection to diabetes, because diabetes is not something that's my family, and we've got other issues. But now I tell some I don't have a genetic connection because I have had really the great fortune of working with individuals in the diabetes community, as you said, it's a fairly small one, particularly talking about type one. But there are some phenomenal inspiring individuals that that really, you know, when I have challenging days, I think of those individuals and it really does inspire me.
Stacey Simms 49:20
So as you're listening, and I know most listeners this week will probably be parents who have very young children. You know, I think we can all think I still think back, Dr. Rodriguez of when my son was diagnosed, and I thought what is his life going to be like, you know, this it's not going to be the life I thought he would lead. He's only he's not yet to and this is gonna ruin things. And it didn't. Like I said, He's got his permit. He's, he's healthy. He's obviously changed our life, but my fears from that age didn't come true.
Dr. Henry Rodriguez 49:51
And again, every day, individualism jdrf, the American Diabetes Association really has made great strides. You probably Heard of the ruling of the FAA? Just recently that, you know, used to be that I told children that, you know, what, what do you want to be when you grow up? And, and they tell you well, I want to be a pilot and that was not an option. Now is that now so? I think the technology, the advances in therapies have gotten us to a place where, you know, we, you can do just about anything you want to do. And so that's, that's something that's, we try to communicate that message to all of our families.
Stacey Simms 50:35
Well, thank you so much for spending so much time with me, I could probably talk to you for another three hours, but I really appreciate it. Thanks for sharing so much of your expertise.
Dr. Henry Rodriguez 50:43
Well, it's a pleasure chatting with you.
I'll link up some more information including the Facebook groups that I mentioned, for the very youngest people with type one diabetes over at the homeless. page and remember on the episode homepage you can find the whole transcription of this interview. I know it was long I really appreciate that you stuck with it stuck with it coming up in just a minute. Tell me something good. We're gonna go to the other end of the spectrum, not babies, but a woman who was diagnosed 62 years ago.
Diabetes Connections is brought to you by Dexcom and we've been using the Dexcom G6 since it came out last summer and it's amazing. The Dexcom G6 is now FDA permitted for no finger sticks. Whoops. We've been using the Dexcom G6 since it came out and it's amazing the Dexcom G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that two hour warm up and the number just pops up - previous iterations of Dexcom didn't do that. I am still getting used to that kind of magical pop up without calibration. You know we have been using Dexcom for six years now and it just keeps getting better. The G6 has Longer sensor. We're now 10 days, and the new sensor applicator is so easy to use. Benny does it by himself. He says it doesn't hurt. Of course we love the alerts. Of course, we love the alerts and alarms, and that we can set them how we want. 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, go to diabetes dash connections dot com and click on the Dexcom logo.
It's time now for Tell me something good brought to you by real good foods where we tell the good news in our community. And I got a great note in the Facebook group and that's diabetes connections the group if you're not in there already, please go ahead and join. Carolyn Fellman said that she is celebrating 62 years with Type One Diabetes. She writes. I was diagnosed at 11 I remember the pan at 11. I remember the pan my mom kept on the back of the stove with the glass syringe. And steel needle that had to be boiled every morning, I took about 70 units of length take insulin. I'm sure if I'm saying that right. One of my favorite stories she says is that one day my mom asked the pharmacist for a pumice stone to file a rough spot of a needle. And he yelled at her for an actress buying a new needle, they cost 50 cents. I started MDI about 40 years ago, and a pump about 25 years ago. I got a Dexcom two years ago, and I learned more about what my body does with food in that first year with a CGM that I had learned in the previous 60. Thanks for asking. She says, well, Caroline, thanks for asking. She says, well, Carolyn, thank you so much for telling us your story. And one of the best parts about her post in the Facebook group is that other people who've lived with type one for 5060 years, chimed in and started telling their own stories. It's just so great to hear and it's just incredible to think about how far everything has come I mean you hear these stories right but here's somebody who lived it and is still doing well. Wow Carolyn I really appreciate it!
Send me your Tell me something good stories we’re sharing them on social media this year as well. It can be anything from a very big milestone diverse story to something your kid did that was fun to something you really just want to share maybe someone in your community did something nice. You can email me Stacey at diabetes dash connections calm or post it on social I'm all over the place. Stacey at diabetes dash connections. com or post it in the Facebook group or message me over social bind me and tell me something good. As I mentioned in our last full episode with the time shiftiness of podcasting, Benny was supposed to get off crutches and into physical therapy and I am thrilled to announce that he is if you're new to the show, he tore his meniscus in October and it has been a long road. He missed the entire Wrestling's Season pretty much, it's almost over now. But he's doing great. He's been so patient. I mean, I got to give this kid some credit. It's been really tough and he's done a great job. He has just had a really good attitude in a really crummy situation. So I'm really, really proud of him. We went to see our endocrinologist in the beginning of January, it was a great visit. He's had the same a one see, for the last three, maybe four visits, if not all four. It's been very, very close, which we're really thrilled with. Going to be excited to see what happens with control IQ. And if that makes a difference. I can't imagine that it won't.
Our next book stop is actually tonight. If you're listening today, this is released on the 14th. I'm heading to Columbia, South Carolina, to talk to the JDRF chapter there. I'm very excited to share some world's worst diabetes mom stories, and then it's off to Raleigh on February 1, we're doing a lot of stuff around the Carolinas, which I love. I live in Charlotte, North Carolina, North Carolina, I posted the complete book tour through March on social media and you can see all of the stops at diabetes dash connections. com just click on community. We have a short episode one of our minisodes coming out on Thursday, and that is all about control IQ. I did a full episode with all the information you need and you can go back just a couple of weeks ago that is with Molly McElwain. Malloy, this episode is just my hope for control IQ, my expectations, my thinking, my expectations, my thinking on hybrid closed loop. You know what I really think Benny is going to get out of it. So that's coming up in just a couple of days. So that's coming up in just a couple of days. Make sure you are subscribed to this podcast. If you're listening on a podcast app, hit subscribe and you will never miss an episode.
Thanks as always, to my editor john Kenneth from audio editing solutions. Thank you all so much for listening. I'm Stacey Simms. I'll see you back here on Thursday when we're talking about control IQ
Transcribed by https://otter.ai
Are you worried about sleepovers? Wondering how to plan? Stacey answers a listener question and explained what worked for her and Benny.
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This minisode 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
This is diabetes connections with Stacey Simms.
Welcome to another of what I'm calling minisodes of diabetes connections. These are going to be shorter shows just me your host Stacey Simms, sharing some thoughts, advice and experience. As always keep in mind, everything I'm talking about here is through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. I am the author of the world's worst diabetes mom. So please keep that in mind.
As you listen. I'm going to be talking today about sleep overs and what worked for us and this was sparked by a message I got from Mike. We talked about Mike and his son Ryan, in one of our last Tell me something good segments of 2019. And Mike followed up and asked me, Ryan is I believe in third grade. And he was asking me about sleep overs for the future. So I thought this might be a really good time to talk about what we did and what worked with the backdrop of Benny, my son being diagnosed before he turned two and he is now 15.
We give him a lot of independence. Just a couple of weeks ago, he went on an overnight with the wrestling team. They were two and a half hours away. We did not go through everything as I would have with a fine-tooth comb two years ago with the wrestling coach or the team mom, although everybody knows he has type one. I made a plan with Benny and he was fine. I don't expect anybody to start out that way. I mean, remember, it's been 13 years of type one for us. And I am I should say, a mom that really pushes independence toward my kids. My kids push back at me, both of my kids wanted to go away to sleepaway camp when they were little. So that's the backdrop that we're working on.
But here's what we did. And here's what I think is important for anybody who wants to start sleep overs. First of all, you’ve got to be okay with sleep overs with or without diabetes. Some people don't like them at all and don't want their kids to do them. That's fine. As long as it's not because of diabetes. I don't think anybody should feel, you know, shamed or embarrassed or bad about that. That's a parent decision. And I've seen online where some people have said, well, it's part of growing up and don't ruin their fun. Look, if it's not your thing, it's not your thing. Don't do it. I'm actually not a big fan of them myself. I find them to be a giant pain to host at my house. And then I worry when they're not at my house and nobody sleeps. Look that some people love them. And if you're listening this far, you're probably thinking about doing it.
Alright, so here's what I think you need to keep in mind. First of all, I think your kid should be able to check his own blood glucose and give insulin - with supervision, right? But a child who's going away for an overnight really needs to be able to poke a finger. Get a blood glucose reading. I don't care if your kid uses a CGM. This is something that every kid needs to be able to do if they're away from home, even for a night and give insulin using an insulin pump, or if on MDI, multiple daily injections, got to be able to do it. Otherwise, you're in a situation where you're really leaning on the host parents to go above and beyond and they probably have other kids to worry about that night. So in my personal feeling and experience, I just did not ever asked any other parent to handle Benny's pump or check his blood glucose. You may have a relationship with your friends where they do that. We did not. And there's nothing wrong with giving your kid a goal. You want to go on sleep overs. Hey, let's work on doing these things.
If you don't have a CGM, it really is okay to let your kids go on sleep overs. We did not have a continuous glucose monitor. Until then he was nine years old. So we had seven years of no CGM. Is life better with it? Heck, yeah. Would I give it back? No, thank you. But my point is that you really can do this without a CGM without remote monitoring. And here's how we did that. Okay, so in the couple of years before Benny had the Dexcom, we would check in with him at dinner, and before bed, and I know this is gonna sound terrible. He didn't even have a cell phone. I feel like a stone age parent. But we would check in with the parents we would call the house or they would call me from their cell phone, or we would just text back and forth, I would check in with the parents. And we would say, What's blood glucose? What are you eating, blah, blah, blah, blah, blah, and make a plan. Same thing before bed and I use that loosely, we would set up a time with the parents, you know, when they were little, it was probably 10 o'clock. And I would check in what's going on with blood glucose, what's going on with food, and we would decide what the rest of the night would bring.
Ask your doctor about this as well, because you might consider increasing the target range overnight. You know, it means some math with multiple daily injections. And it probably means just changing a pump setting or even a temporary pump setting if you use an insulin pump. Now before you yell at me, “I don't want to increase my child's target range, we keep it tight at 85.” Well, you might have a problem with sleep overs. If you want to keep your child within a super tight range. I don't think the first sleep over is the time to do that. I think you're setting yourself up for a lot of stress. And I think you're setting your child up for a lot of stress.
In most insulin pumps, you have a target number, and then they do they try to do up and down you know within 20 points of that. So if your target number in your pump is 80, move it to 120 for the night. If your target range is 120 to 180 for the night for one night, talk to your endo before you do any of this, please tell them the crazy lady on the internet mentioned doing it. But all kidding aside, I really think moving that target range up helps everybody sleep better for one night.
Now, what about that overnight? If you have remote monitoring, you might think well, that's easy. I'll just watch. I'll stay up and watch the numbers all night long. You can do that. Or you can kind of figure out in your head, When am I going to call, right? When am I going to really decide that I need to intervene. And again, this is personal. Certainly, for low blood sugars. You got to make a plan. And what we did even before CGM is I would always send low stuff now you gotta send it along. I never assume that somebody has it. Because even if their house is stocked and man, Benny has a friend and they keep a giant fridge of regular soda, all different flavors, like it's their thing, but it's all regular, it's all full of sugar in the garage. And you know, you might think, well, he's all set. But you know, your kid may not want to go out of the room in which they're all sleeping or spending the night to go by themselves to the kitchen and the fridge. It's a strange house. They don't want to wake people up. You know, a lot of kids get on comfortable, they want to be polite, they don't understand that the parents are there to help them, you know, so you don't want your kid running around somebody's house low. So I sent everything I want him to eat or drink. If you have particular snacks that you use when their kids low that you know work, send them along.
And what we always did was send Benny with a Gatorade, one of those medium sized bottles, it's a lot more carbs than I'd give for a regular overnight low. I think a bottle has 30 or 35 carbs in it, where we usually give like 10 right, but it's easy. So our rule on sleepers is if you wake up and feel wonky, drink the Gatorade, drink it first drink at all, and then check. So when he was younger, he would drink first and then check by poking his finger. As he got a little older, he would check and look at the receiver. Now we can wake up and look at his phone these days. He really does look before he drinks most of the time. But if he feels low, I don't care what the CGM says, drink the Gatorade. And that has never been a problem. He's never woken up and been high and then had the Gatorade you know what I mean? He's never miscalculated. It's always been, I'm low, I'm drinking, I'm good.
But what are you going to do about overnight lows, this is a time to sit down with your child or depending on age, make the plan, tell the child and tell the other parents, you know, if my child is below 80 for X amount of time, I'm going to call him or I'm going to call you and ask you to treat. If my child is below 60 for X amount of time, I'm going to call you, you know, things like that. I would make a plan in your head. Think about it, think about how you want to handle it, and then share it with the other parents. It's tough, right? Because it's that fine line of not wanting to scare people not wanting to have your child excluded in the future because it's too much work. But it's also a line of information. They need to know these things.
When he was very little, I would send glucagon I would talk about it. I would train my very close friends, just two or three people that he regularly spent time with and I would train them on the glucagon. You know, it's funny, I stopped because I read a study that shows in the majority of cases, caregivers, even trained just messed it up. They didn't use it right, because they were under so much stress. So I always threw it in his bag. But I never trained anybody again, I would include icing, you know, and I had cut the tip off, because I was always afraid that he'd be low. And you know, they have that stupid cap, and then you open it in, you have to cut it or you’re biting it off. I didn't want that happening in the middle of the night. So I would always cut the tip off. And I would talk to them about that, rub a little icing on his guns. But I would also always say, look, it's been X amount of time and we've never had to use it. Right. It's been eight years it's been 10 years and knock wood, right? We've never had to use it. And I think that was reassuring as well.
But when you have a sleep over, you never expect an emergency. But when I was a kid, I had a sleep over and my friend cut her leg on the edge of I think it was the edge of my trundle bed. It was metal. I mean, this was back in the 70s and she could have deep enough that we had to go to the hospital and we had a babysitter. My parents weren't even there that night and we had to go to the emergency room and she needed stitches. Crazy things happen on sleep overs. If you're going to have a sleep over, you're prepared to take care of the kid that's there, whether they cut their leg deep enough to need stitches, or choke on a piece of food or having intense low blood sugar. And that's how I usually phrase it because to us, that is how rare it is. That's the chances of it happening or that rare in your case, if you're if you've used glucagon several times, or your child does go low more often. These are things to think about as well and to talk about, and I'll tell you what, with the newer emergency glucagon kits that are out now with Baqsimi and Gvoke this is definitely a game changer. Baqsimi is the nasal spray Gvoke is the already mixed ready to use kind of like an EpiPen. I think you've got a much better chance of caregivers using that accurately. I would send that along for sure. And tell them how to use it especially if you can say hey, it's like an EpiPen. Everybody knows what an EpiPen is. And I think that gives people a lot of peace of mind.
We also did test run Now if it's a new family, I really like to do this. We would have like a dinner, play date dinner hang out. And I don't know about you, I don't let my kids sleep at strange houses Anyway, you know, where I don't know the people. So this should be pretty easy. So if he gets an invitation, or you think he's getting to be good friends with somebody, and they're talking about future sleepovers, we always did this. So he'd go to that house for dinner. And he'd stay till when he's little like nine o'clock. And that was a good test run for sleep overs because they could eat, they could hang out, they could see what was going on. And I also made the parents promise to call me with any questions, any questions, no matter how dumb and I would tell them, Look, I'm only going to sleep tonight. If I know that you will call me if I think there's a chance that you won't call me with questions. I will not sleep. So do us all a favor and promise to call me and that usually worked and a little bit of humor.
And you know, I don't know why that just reminded me but kind of speaking of humor, did anybody use the share cradle? So if you're not familiar, remote monitoring with Dexcom Share has only been around officially for about four, maybe four and a half years at this point. And I know it seems like it's been around forever, but it has not. And the first iteration of it was this Share cradle. So you would take the receiver, the Dexcom receiver, and you'd slip it into this. It was a cradle it was a little case. And I'll post a picture on it in the Facebook group and show you and you could get the signal then to your cell phone. It was amazing, but it wasn't portable. Well it wasn't supposed to be portable, but people plugged it into a battery pack and threw it in the backpack and took it with them wherever they went. And that was the first official Dexcom portable Share. I mean, not to mention night scout and all the things that that came through the Do It Yourself community. But we had that cradle, and I took it to one exactly one sleep over because it was such a pain in the ass to bring it to find a place where it would pick up the signal where there was Wi Fi. I don't remember what happened. There was a phone issue. And I promise you that night Benny was at a sleep over at Logan's house. And I was gone for 20 minutes. And my friend Karen called me and said, Benny, he says his Dexcom came out. I was like, You know what, spent half an hour sitting the damn thing up in your house. Forget it, just forget the whole thing. Don't worry about it. Tell me not to worry about it. And so I never actually used to the Share cradle at any sleep over.
So fast forward to my 15 year old, who spends the night often at one person's house. Now he's got a really close friend. And that's really the only place where he's sleeping over. But he does do overnight trips with school, that sort of thing at the wrestling team, as I mentioned. So now, we just check in before bedtime, really around 10 o'clock, and I say “you good” and that “you good “means is your insulin pump charged? Is there insulin in the pump. Did you do your Tresiba? because he takes long acting along with the pump. And it also means do you have your Gatorade? Now, I know that sounds like a lot in the secret code, but we talk about it I sit down with Benny and I say, What do you need? How can we keep you safe and happy and me happy and not flipping out and not texting every 20 minutes. And that's what we came up with recently. 15 is a lot different than seven in many, many ways. So I wouldn't encourage you to start out that way if you're just starting sleep overs. But also keep in mind, it is hard to believe that in the next year, Tandem and Omni pod are going to be showing that kind of information that I mentioned like is the insulin pump charged it was their insulin in it, it's going to be shown on the remote app. And even though tandems phone app isn't launching with any kind of share remote monitoring feature, my understanding is that you can log into the T Connect account and you can see what's up. So we'll be testing that out in the weeks after we get control IQ.
I think the bottom line with sleep overs is they are a fun way to start your kid thinking about independence. They are truly not the time to worry about a super tight blood sugar range. There's going to be weird food, there's going to be weird activity. The idea here is to not let diabetes truly get in the way. Is it there? Yes. Is it going to be very difficult the first couple times, of course, but you can make a plan. You can talk to your kid, you can talk to the other parents and you can find ways to make it fun and make it doable for everybody.
One more thing before I let you go, do not misunderstand my attitude. I worry. Every single time that kid goes on an overnight. I worried when he was young. I worry now, I know I'm going to worry when he's older. But the idea here is Look, you're gonna worry you're a parent, but let them do it. You can't let your fear stop your child.
Agree? Disagree? Keep in mind I am the World's Worst Diabetes Mom. I would love to hear from you. What do you thinking of these minisodes? Do you have any questions you have any topics you'd like me to address? You can drop them in the Facebook group at diabetes connections the group or ping me Stacey at diabetes dash connections calm and remember the world's worst diabetes mom is available on Amazon in Kindle paperback and audiobook. Find out more at the website, our regular full length episodes here every Tuesday. I'm Stacey Simms, and until then, be kind to yourself.
Aerospace engineer April Blackwell works at NASA’s Mission Control. She dreamed of being an astronaut but her type 1 diabetes diagnosis at age 11 changed everything. Since that day, though, she has found ways to break down barriers and pursue her love of space.
April calls herself a "rule-questioner" and shares where asking those questions got her. She and Stacey talk about everything from family – she has two young children – to what it’s like to work as part of history in the space program.
In Tell Me Something Good, a milestone for a tween with T1D – and her whole family gets in on the celebration.
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 (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors)
Stacey Simms 0:01
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.
This week, aerospace engineer April Blackwell works at NASA's mission control. She always wanted to be an astronaut, but she was diagnosed with type one at age 11. And that changed everything. But since that day, she's found ways to break down barriers and pursue her love of space.
April shares where asking those questions got her and we talked about everything from family - she has two young children - to what it's like to work as a part of history in the space program in Tell me something good a milestone for a tween with type one, and the whole family gets in on the celebration.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.
Stacey Simms 1:32
Welcome to our first full show of 2020 Happy New Year everybody. Hope your year is off to a great start if you're new to diabetes connections, welcome. I'm your host Stacey Simms. We aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed 13 years ago, just before he turned two. He's now a freshman in high school. He's 15 years old. My husband has type two diabetes I don't have diabetes, but I have a background in broadcasting and local radio and TV news. And that is how you get the podcast.
As you have heard, if you are a longtime listener, some new things this year, we have some new sponsors. I dropped a minisode, a short episode last week. We're going to be doing those every week. So you get the full episode, which is something like this where it's an interview and we have some segments and then you'll have that minisode and planning for every week right now. We'll see how it goes. Which is a much shorter episode just me on one topic. And please follow along on social media because we're doing more new stuff this year. On the Tell me something good segment which has become really popular in the show. We're putting that out on social media every week, making sure you're following on Instagram. I am Stacey Simms on Instagram, there's only the one account on Facebook, Diabetes Connections the Group, although I do post everything on our page, but you know how Facebook is sometimes they are just obnoxious and don't show you everything you want to see.
Something else I'm trying in the new year is transcription. I am putting in the show transcription of every episode. On the episode homepage. You can go to diabetes dash connections dot come, and you scroll down. Make sure you look at the current episode, click on that. And in the show notes will be the transcription of the interview and hopefully the whole episode as well. as well. Something new we're trying we'll see how people like it will see how you respond if it's popular and people use it will keep doing it. I have had a lot of requests for the transcripts over the four and a half years of the show and as Technology is better and better. It's been a lot easier to get that done. Done. Maybe I'll do it behind the scenes minisode One of these days and tell you about all the changes that we've gone through and some of the technology as podcasting really grows, how things have changed, but I know you're here to talk about April and NASA and how she got involved in the space program. It's such a great story. My talk with April Blackwell in just a moment, but first
Diabetes Connections is brought to you by One Drop. One Drop is 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 is sleek, compact, is 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 Drops of script 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. If you have questions you don't feel like waiting for your next doctor visit. Your personal coach is always there to help. I am so excited to have One Drop on board. Their program is amazing. Check them out, go to diabetes dash connections calm and click on the One Drop logo to learn more.
My guest this week is not someone who takes the answer No, and accepts it and goes away quietly. April Blackwell grew up dreaming of the space program. As you'll hear, she watched out for NASA news. Like most of us watched Saturday morning cartoons when we were kids. But a diagnosis of T1D in sixth grade grounded her astronaut dreams. But how did you decide to carry on anyway? You know what did you have to do? To get where she is at mission control. her blog name and her Skype handle are nerdy April, and you'll hear me ask about that. But I gotta tell you, when you talk to someone on Skype, which is how I do a lot of these interviews, the the avatar, the logo, whatever you want to call it, of their name, or their face is on the screen. So the whole time I was talking to her, it said nerdy April on the screen, which really made me smile, all right here, which really made me smile on the screen, which really just made me smile, and I did have to ask her about it. Her story, though, is it's a story of grit, of asking questions and refusing to give up. Here's my conversation with mission controls. April Blackwell.
Stacey Simms 0:03
April, thanks for joining me. I'm sure you're really busy. And I appreciate you taking the time to talk to us. How are you?
I'm doing wonderful. How are you?
I'm great. And I'm excited to be talking to you. I have lots and lots of questions. But I have to start with, with your name online and on Skype as we're talking nerdy April. Did you reclaim that nerdy title?
April Blackwell 0:27
Oh, I am a I'm a proud nerd. I think all nerds who are truly nerds are proud of it. So it actually started though, because the my blog title started as Nerdy April's Space Adventures. And if you take that as an acronym, like, you know, everything NASA related, it spells out NASA so it kind of was a little bit of a play on words and acronyms there, but it kind of turned into just Nerdy April and that's how I've been rolling lately.
Stacey Simms 0:59
Okay, So I want to ask you at the blog, I want to ask you about NASA, but let's start at the beginning. You knew that you wanted to be involved in science and in space from a very early age, right?
April Blackwell 1:13
Yeah, I was only about five or six years old. I was in a kindergarten and my dad actually, he is an aircraft mechanic. And so there's a little connection there. But he also is just a deep lover of the space program. And he grew up in the Apollo days, sort of that romanticized moon landings and everything and he was just an amateur but it and his love for the space program just really captured me. And so that's kind of where that all was inspired from.
Stacey Simms 1:45
What were you doing, though, at age five? I mean, when you were with your dad, looking at stars were you watching launches?
April Blackwell 1:52
We weren't watching launches. I grew up in Arizona, so it's pretty far away. Florida, where most of the launches happened. Well,
Stacey Simms 1:58
(laughs) I was thinking about on TV.
April Blackwell 2:00
Yeah, yeah, I definitely watch some on TV we did have a very rudimentary telescope. So we would go out and mostly look at the moon since that was it a big target we could watch. It didn't have a tracker or anything on it. So it was all manual. And it required some fine tuning by dad before I could look through it. We built model rockets together and launched those later on.
I went to sort of local science camp during the summer, and started getting excited about computers and everything that had to do with science. So robots and engineering type problem solving. And so it just stayed with me my whole life.
Stacey Simms 2:45
Wow. So when you were diagnosed, not too many years later, you were 11. What happened? were you hoping to actually be an astronaut at that time?
April Blackwell 2:55
Yeah, so I i think that was always the pointy end of the spear for was to be an astronaut. And, you know, that's when you watch TV and everything those, those are the people that you see. And so that was always kind of my final goal. When I was diagnosed at 11, it took a little bit of time for me to realize that, you know, astronaut was going to be more difficult now that I had type one diabetes. And some of that sort of came into focus later in my life. But at 11 it was kind of just heartbreaking. You know, I was watching launches and getting excited about space, but then knowing that that probably would never be a reality for me.
Stacey Simms 3:41
So at age 11, you know, I guess you have many choices, but you can say to yourself, well, that's that I've got to find something else and be devastated or too bad. Or I'm going to move forward and do this some way somehow. Did that decision happened for you? immediately. Did it take some time for you to continue to love science the way you did?
April Blackwell 4:01
It definitely took some time. And I guess I'll just touch on the fact that I think being diagnosed with diabetes at 11. Well, in the first place, there's no great time to be diagnosed with diabetes. But I think being diagnosed at 11, it sort of puts you on this really fast trajectory towards adulthood. Because you want to maintain your independence as much as you can. My parents implemented it, such that I had to be able to give myself shots and test my own blood sugar before I could spend the night at a friend's house, for instance. And so that was a big motivator for me. And I think, you know, maybe I always had a little bit of an inclination towards being a little older than what my physical age was. You can ask my mom I used to wake up early on Saturday mornings, to watch the news, not cartoons, just in the hopes that I might see you know, some information about NASA. But I think, you know, sort of that catalysts of putting me on a trajectory towards adulthood helped steer sort of my ideas about what I wanted to be in the future. And while I knew I could never be, or probably could never be an astronaut, space was so exciting to me and talking about rockets talking about, you know, low Earth orbit and traveling 17,500 miles an hour, five miles per second, thinking about these huge engines that need to take astronauts and supplies up to space, I just couldn't get it out of my blood out of my brain. And so I decided that even if I couldn't be an astronaut, I would love to work in the space program in some capacity. And that sort of led me to looking at an aerospace engineering degree.
Stacey Simms 5:54
All right, let's go back for a second about your parents in the transition at age 11. What was your diagnosis story like, were you very sick for very long? I mean, I know we kind of sometimes we talk about it like and then you you didn't have diabetes and then you did and then life went on. Can you kind of fill us in on on how you found out?
April Blackwell 6:13
Yeah. So it was, I guess nothing extremely remarkable about it, but maybe that's why I should tell it is because, you know, there is this sort of the normal warning signs that everyone comes up or comes up against. And so it was kind of in the Christmas time frame, December timeframe. I just got a cold. And then, you know, my grandparents were in town for the holidays, and we usually would stay up late playing cards, and you know, eating Christmas candy, and I just, I couldn't I just physically couldn't I was extremely fatigued. And then when I started getting up multiple times during the night to go to the bathroom, you know, my mom bless her heart, thought that I was probably suffering from a urinary tract infection. And her old wives tales, of course, told her that we needed to treat this with the cranberries.
Unknown Speaker 7:14
April Blackwell 7:15
yeah, so. So we hit up the cranberry juice pretty hard for a little while, and it just wasn't getting better. And so we started going to the pediatricians office. And it took almost a week of daily pediatrician visits. I, I joke to that I could just pee on command, because every time I would show up there, they would tell me to, you know, get a urine sample. So it sort of became this joke. And then I was finally diagnosed on December 30. And they told us that we needed to head over to the children's hospital right away straight from the pediatrician’s office. We had no idea what diabetes was about at all. I absolutely had zero idea. I don't think my parents really understood it at all. They were just scared. And so we had we went over to the Children's Hospital, but unfortunately it was a sort of a skeleton crew because it was the holidays and New Year's and stuff. So they told us to just go home. And it turned out that my old pediatrician, he actually lived next door to us. And so he came over for a couple days to help give me some insulin shots and test my blood sugar. While we still had no idea what you know, was to come more shots every single day and blood sugar tests every single day. So it was definitely a steep learning curve as I think most diagnosis stories are.
Stacey Simms 8:41
Yeah, it can just take so much time to get the diagnosis. I get so frustrated by that. But you know, at least they got it before it was even more devastating. Fast forward a few more years, you have kept your interest in space as you said, What did you wind up studying in college or did you go you know what, where did your path lead you to continue after high school.
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April Blackwell 9:01
Yeah, so I was very fortunate to get a full ride scholarship in state in Arizona, and because of my grades, so I went to Arizona State University and studied aerospace engineering. And then once I got out, I kind of hit a little bit of a roadblock because there was a period of time in the aerospace industry that the space shuttle was looking at being retired. And so the the future of NASA was a little bit unclear as to what was going to happen. So a lot of companies and related industry sort of put put a hold on hiring right around that time. Which was unfortunate but it turned out to be a blessing in disguise because I ended up getting a job working with the army of all things in Huntsville, Alabama. So I moved across the country. Free to work in a triple wide trailer we like to call it in Huntsville, Alabama, which just sounds so glamorous.
Unknown Speaker 10:10
Oh yeah, the stars all end up there.
April Blackwell 10:14
But it turned out to be a really great experience. So
Stacey Simms 10:17
did I also see somewhere where you were testing helicopters?
April Blackwell 10:22
Yeah. So that's what I was doing for the army. And it was really awesome. It wasn't it wasn't quite space. But it was a really great way to get my feet wet on just what it means to be an engineer and what kind of engineering I personally like because there's so many different avenues you can go with that degree. So I got to fly on experimental helicopters and boss test pilots around which was really fun. The group I was in actually was really tight knit and it I'd say even more so than my group at NASA Now. And part of that, I think is because, you know, you had to fill out paperwork that said, who in your group would go tell your spouse or your significant other that there had been an accident. And so we really counted on each other to to watch out for each other. And all of them absolutely supported me with my diabetes. You know, my flight suit had specific pockets with snacks and blood testers and stuff. And so we always kind of joked, like, oh, if you need a snack, April always has one in her left lower leg pocket or whatever.
Stacey Simms 11:42
Let me just jump in and ask. So when I said you were flying helicopters, I was gonna ask you how the heck did you get clearance to do that as a person with diabetes, but it was as a passenger?
April Blackwell 11:53
Correct. Yeah. So I flew on them not actually physically flying them, but it did still require FAA medical clearance which took about six, six months to get all of the paperwork in and get clearance to finally fly on the helicopter.
Stacey Simms 12:10
so that's what I wanted to ask you about. Can you talk a little bit about doing this because it's it sounds so exciting and I know so many young people who want to serve in the military or want to fly and Yep, we've just got, you know, the, in the United States, FAA says now you can be a commercial pilot with type one. So progress there. But right, what do you need to do, you know, as we're going to talk about your path going forward, to kind of accomplish what you've done. You've mentioned medical screenings, things like that. You there's just a lot is there a lot of paperwork and exams? I
April Blackwell 12:44
Yes, I will tell you it's a little bit of a black box. Even now with the FAA ‘s new guidance. That type ones can apply for these waivers for class two and class one medicals. It's not clear to me how many type ones they've actually accepted into those medical clearance buckets. That data is never published. And, in fact, the process to get a medical for me, like I said, took about six months. And it was really me going to an FAA Doctor who said, Hey, I can't clear you because you have type one diabetes, I can check you for all the other stuff, but that's going to require some special paperwork. So he sent in his recommendation, of course, I had to get letters and agency readings from my endocrinologist.
Initially, the paperwork I started with about a year's worth of data. I sent that in and it took about three back and forth between me and basically a blackbox doctor in Washington DC at the FAA to finally get the amount of paperwork they wanted. And to be honest, I just got frustrated with The process and so I called my mom and dad back in Arizona, and I said, Hey, can you just run down to the Children's Hospital and literally make copies of every single piece of paperwork that they have, since my diagnosis? Back then it was all paper, not, you know, digital, it was literally copies of these pieces of paper, you know, probably a three inch thick, you know, stack of papers, and I literally sent that into the FAA and I said, this is all the data that I have from my diagnosis, you know, X number of years ago, and I have nothing else to give you, basically, and they finally said, Okay, okay, that's that's enough. And they granted me clearance for one year. But it was it was a frustrating process and I haven't tried to get another one.
You know, since moving to Houston because I do all of my medical clearance now through the NASA doctor so I can talk with them directly. There's an actual face to face, but the FAA doctors are a little bit of an enigma I guess.
Stacey Simms 15:06
So I guess the lesson there if a parent is listening or if an adult with type one is listening is be persistent.
April Blackwell 15:13
Yes. If it's something that you really want, you know, you're going to find a way to overcome it and do it. And I just, I just always say, never give up and be a rule questioner because there are a lot of rules that are based on old data and old diabetes technology and management techniques. So it's worth asking the question, because a lot of these doctors especially, you know, if you think military doctors and FAA doctors, they deal with really, almost perfect human specimens, if you will. And so they're just, they just don't have the knowledge of you know, what is going on in the diabetes sphere these days?
Stacey Simms 15:54
What an interesting thought, Yeah, why would they know because everybody is like GI Joe walking in.
Unknown Speaker 16:00
Stacey Simms 16:02
That's a really interesting thought. Okay, so you're, you're, you're in these experimental helicopters, you're following your career. You're in a triple wide in Huntsville. How’d you get to Mission Control?
April Blackwell 16:16
Yeah, it's a great question. Um, I will say just before I leave the helicopters for a minute there in Huntsville, you know, I had this opportunity to sort of push a lot of barriers that type one diabetics came up with against because the military doesn't allow type ones, you know, that were previously diagnosed at least right now. And so I got to go through the altitude chamber, the helicopter dunker trainer, which is basically two days of being drowned alive. And I went through the parachute course. And all of these required talking with doctors and just explaining the situation to them because they literally don't deal with type 1 diabetic patients, because that's a disqualification right off the bat. And all of them were super receptive, super open to it.
My military friends supported me going and talking to them and coming up with plans. So you know, we would come up with a plan, like we're going to leave your pump on till we get to this pressure, and then we're going to take it off and leave it outside of the altitude chamber, you know, and that's going to be 15 minutes. So make sure your blood sugar is at least 130 at that time, or whatever it is, you know, but it was a really great way to sort of break down those barriers. And I even included a two week course at the Naval Test Pilot School, in Pax river, Maryland. So that was a really kind of culmination of all these, you know, sort of barriers that I had overcome and a way to, you know, sort of solidify that I was on the right path.
Stacey Simms 17:54
That's fantastic. Wow. And that's great to have that support from the people around you. I love to hear that.
April Blackwell 18:00
Yeah, they were really great.
Stacey Simms 18:02
You get, you get dunked, that sounds so enjoyable. I mean, I know you and I, it sounds like we have very similar personalities and enjoy a lot of the same activities (laughs)
April Blackwell 18:11
Unknown Speaker 18:14
Tell me about what led you then to your position at NASA?
April Blackwell 18:17
Yeah. So from my my helicopter job, I was doing a lot of traveling around two weeks every month I was gone. And for a newly married person, it was just a little bit hard on the family so started looking for, you know, some other opportunities and found these jobs pop up in Mission Control. And I had absolutely no inkling that I would even get called to interview for them. But it turned into, you know, this flight test experience that I had, working on the helicopter as well. Well, it sounds completely different, actually was a lot of the same skill set that they look for in flight control. rollers. And so that sort of, you know, allowed that door to be open to get an interview at NASA. And of course, I ended up falling in love with it. I mean, it was job working at the home of manned spaceflight and now crude spaceflight with women, you know, joining in and getting to work in such a historic building like Mission Control. And you know, I'm even going there tonight I'm working this evening, that evening surf to fly the International Space Station. So it's, it's just really a dream come true.
Stacey Simms 19:33
Okay. I have chills as you're talking about controlling the International Space Station. The the setup, I just want to take a moment because I think we all do know what Mission Control and flight control you know, what it looks like and what you do, but and correct me if I'm wrong here, but what we're talking about is what we see in all those movies. Right. When you know when they say Houston, we have a problem your Houston I mean, you were that big room, right? Yes. The diagram was all the guys in the white short sleeve t shirts and the glasses from the movies that we've seen all these years. That's Mission Control.
April Blackwell 20:07
Exactly a skinny tie and a pocket protector. We don't smoke anymore and missing control. Yeah, but if you get in the elevator it's in, it's in the same building so that the room for instance, if you've seen the movie, Apollo 13, the room that that movie was based on is actually just one floor up from our current International Space Station control room. And so when you get in the elevators, I always joke it's sort of this aroma of like 1960s cigarettes and coffee mixed together. But that's just the way missing control smells and it's, it's hard to describe.
Stacey Simms 20:47
Alright, so when you're going to work tonight, and you know, controlling the International Space Station, tell us what that really means. I mean, do you mind breaking it down a little bit? What are you going to be doing? I mean, in Yeah, I understand.
April Blackwell 21:00
Absolutely. It's not that hard. So basically, you know, we sit at a big console that has several computers, we monitor a lot of telemetry data coming down from the space station all the time. And it uses a satellite constellation to make sure that we can get our data even when they're on the other side of the world. So we look at that data, we make decisions based on that data. If we see any anomalies, we may send commands up to the vehicle. And then on certain days or nights, you know, there may be a big event like a docking or undocking, maybe a spacewalk.
And on those days, you know, it's our
job is even a little bit more critical because we'll be sending lots of commands and making sure that the space station is performing. Its absolute best to make sure we don't have any anomalies where maybe there's another vehicle really close by, so
Stacey Simms 22:00
Have you ever had an experience that was kind of frightening is the right word, but you know, where, where someone or or a mission was in jeopardy.
April Blackwell 22:13
Um, I've had a few
kind of small anomalies happen. I haven't been on console for anything very major. But that doesn't mean that major things haven't happened. This was, you know, hasn't lined up with my console shifts. But it's interesting because even when when stuff happens when you aren't on console, you sort of have this adrenaline because you know what that person sitting in the seat is feeling, you know, the whole lead up to being a flight controller. It's not like you're hired and the next day here on console, we call it almost a second master's degree. So you have about two years of training. About a year, a little over a year of that is sort of bookwork so you're learning a lot of information about that. The system we control, and you're taking oral examinations. And then the next piece of it is simulation. So we actually simulate, you know, really bad days, days that are worse than any any days, we've actually seen real time. And this is all to prepare you for that prioritization skill of being a flight controller and being able to work through stress. stressful situation. So we always joke that, you know, one small anomaly in the real room feels like 5050 anomalies, you know, in the simulation room, and that's just how we have to train ourselves to be able to cope with that stress. Wow.
Stacey Simms 23:44
What is the best part of it for you? Is it walking into that building? Is it knowing that you know that elevator is there and you're part of all that history? Is it just you know, logging in for the day I'm curious what you know what gets you still very excited about this? Because obviously You are?
April Blackwell 24:02
Yeah, so I'd say there's kind of two pieces of it, there's sort of a physical, almost just, you know, like chemical response, when you cross the threshold into Mission Control, you know, you have to swipe your badge like five times, you know, to get in the building, and then get in the room and all this stuff. So when you cross that threshold, it really is like, you're just leaving all your other problems and everything else that you've thought about that day, outside, because you need to focus. And you need to bring your best self, you know, in here, because there are literally at least six humans on board that are counting on you to take care of them and take care of their spaceship. And then as you sit down, we have what we call big boards and the friends so they're like these big projection screens and we're always getting video down from the space station, usually in about six channels. And we call it the windowless room with the best view because the view is just incredible. I mean We now have these HD cameras on board. And as you're flying my favorite place to fly over the sort of the Mediterranean Sea, and just the colors juxtapose there with like the desert sand and Africa, it's, it's just incredible. And without actually being an astronaut, I feel like it's close to being the next best thing. And then the second part is sort of what you were talking about the history, you know, in this in that very building just one floor up is where the controller sat when we landed on the moon. And they worked through problems real time, you know, to tell the astronauts what to do. And these were people that had computers with much less computing power than our iPhones today. And they were very young. If you look at any of the documentaries and everything, these were like 20 something kids fresh out of college, you know, space, there wasn't as much history then. So it's hard to you know, lead your whole life thinking you're going to be working in space. It's like something you just thrust upon you basically. And they were able to overcome all of that and be able to land man on the moon. It just, it still blows my mind today, even when I walk in that building. Wow,
Stacey Simms 26:17
that's amazing. So does Type One Diabetes on your job? Do you mind telling us a little bit about your routine? Because there's some very long shifts, lots of pressure, you know, you can't exactly take a lot of breaks, I would assume. Can you talk a little bit about how you manage it?
April Blackwell 26:32
Yeah. Um, so I mentioned before that we're constantly monitoring telemetry from the space station. And as type one diabetics, we're kind of used to that already. Actually, we constantly monitor telemetry coming from our own bodies. I use a CGM. So I set that in a prominent place. And it is just become part of my scan pattern. I scan all of the data that I'm looking at Looking for anomalies. And then I also glanced over at my CGM, and just make sure that I'm trending the way I want to be trending. And generally on console, I'll keep my blood sugar a little bit higher. So try to avoid going below about 120 or so just because I know if at any moment something could hit, basically. And so, you know, I don't want to have that rush of adrenaline drop me really low. So I try to keep it a little bit higher. I always have snacks in the control room, we're allowed to eat, you know, as you mentioned, they are long Fest, so you usually have a meal that you eat while you're there. And then all of the flight directors also know that I have type one, that's not a requirement or anything, but I think as a member of their team, it's important that they know that's something that I'm also monitoring and so it may require that I you know, step out for a quick two minutes to go grab a snack or, you know, do a little Check or change the site even I've had to do that at work. And so I think just being really candid and open and and, you know, open to answering any questions that they have is really important in sort of these high stress jobs like this.
Stacey Simms 28:19
And a while back, I interviewed Ernie Prato, who also works at NASA and also lives with type one. And I know you know each other.
Unknown Speaker 28:27
I don't, this is gonna sound so weird. So I just kind of a mom question. So I'm sorry for asking it. But like, do you guys see each other at work? Do you check in with each other? I mean, I know not everybody with type one. Diabetes has to be friends. But the mom and me is kind of hoping that you support each other.
April Blackwell 28:44
Yeah, so it's funny that you mentioned Ernie because
we sort of have this unofficial Johnson Space Center Type One Diabetes club and Ernie actually sits in Completely different building off site. He sits over at the airport now. So I don't see him daily, but we have sort of instant messaging capability and so will frequently talk on there. And we have another friend who actually works in the search and rescue area. So he's doing a lot of cool things with the military in order to get our astronauts safely home after they land. And so it's really fun we all meet and you know, you think we would like talk about space and stuff because that's what we do. But we always end up just talking about our diabetes and what devices were using which ones are you know, giving us trouble which ones were low on supplies for, if anyone's tried to like, you know, come up with engineer way to make something work better or whatever. So it's really fun to sort of have that outlet and especially at work with kind of like minded people.
Unknown Speaker 30:01
I'm glad I asked
Stacey Simms 30:05
what do you think would be next for you? Do you have other goals within what you're doing now? I mean, what you're doing now is so exciting. And I would assume you would want to do this forever. But are there other things that you would like to accomplish that you're working on?
April Blackwell 30:18
Oh, that's a loaded question.
There's so many things. Right now, I think my focus is just to you know, be the best engineer I can at work. And then I also have two little kids. So I
Unknown Speaker 30:33
yes, I want
April Blackwell 30:35
a three and a half and a one and a half year old. So they are taking a lot of my energy right now. And I think that's totally fine. That's, that's the season I'm in and so I want to be able to enjoy that. And so I think as far as my career goes, and everything, I definitely still have that astronaut dream out there. And I think there are opening up some new ways To be able to make that happen, and if not for me, then definitely the next generation of diabetics or maybe, you know, if we come up with a cure, then the non diabetics. But I'm really excited to see where that goes. And then I, I think, also just kind of spreading this message that you know, even if you perceive that there's a something that could hold you back as a type one diabetic, make sure that you are asking questions because it may not always be a hard know, and you sort of need to figure out what it is that is really keeping you from doing those things.
Stacey Simms 31:36
I don't want to get too personal, but I know a lot of listeners will be interested. You know, when you have type one. There are a lot of concerns about having children. I mean, less so today, but you have to do so much work, it seems to me, you know, was it? Gosh, you seem like such a disciplined person anyway. And again, I don't want to pry but healthy pregnancies you did okay. You said you had a CGM. Do you mind sharing a little bit about that? Yeah,
April Blackwell 32:01
um, so I actually don't get this question very often, I think because everyone's so focused on the NASA and space scope, but I'm really happy to share it because I think it is important. It's not something that a lot of women talk about.
So, yes, I had two kids, three and a half and a one and a half, one and a half year old now. The first was a girl and everything went really, really well.
I was induced, and that was sort of just my ob was being a little cautious with having diabetes and making sure I didn't go too long. And so I was induced, which turned into like a 40 plus hour labor, which was unfortunate. But everything turned out just fine. And she has a lot of attitude now. So something worked there. My son, so he's just about 18 months now, a little bit different flavor of pregnancy. As weird as that sounds. He had a lot of fluid around him while I was pregnant. So I gained a lot more weight. And I was just generally uncomfortable because I felt like my stomach was literally just gonna like burst open, it was so, so stretched out. And he ended up being a C section baby and he was over nine pounds. And that was again early induced about 38 weeks, so to completely different pregnancies. I had good control through both and you know, all of the non stress tested all of that when we're going well, and it just turned into a little bit of a different labor situation with my son so but I have two awesome Healthy Kids now and they do take a lot of my energy It's interesting because you know, my daughter being three and a half, she understands I have these sort of extra devices hooked to me. Console, she, she knows the word diabetes, she knows the word pump, she knows that sometimes I eat her applesauce pouch when I'm low and we're at the playground. Because that has happened before. Sure. And my son is still you know, he's just, he isn't quite to the point of communicating those feelings yet. So he'll touch my site, and I'll tell him No, you know, but it's just interesting seeing how they react to it. And I think in a way it will hopefully make them more empathetic to you know, friends or people in the future that they come across and this is just a normal part of life. And you know, everyone has something they're dealing with, I think, you know, Type One Diabetes happens to be mine, but everyone has something and so keeping an open mind and judging people based on devices or things that they see right off the bat I think is really important.
Stacey Simms 35:07
Do you mind if I ask what devices you use? But pumping CGM?
April Blackwell 35:11
Sure I use the tandem.
x to polymer and sex sex. com g sex ctm. So I get that data right on the pump, which was really nice.
Yeah, I like both of them's though. I'm a big fan. Before
Stacey Simms 35:30
I let you go, you know, this is kind of a tough question for you to answer. But your mom and dad, you were 11 when you were diagnosed, you shared this love of space and science with your father. Your you have an incredible career. You have two children, they must have been worried during the pregnancy. You know, have you had a conversation with them about Wow, did you ever think after that diagnosis where I would be today?
April Blackwell 35:55
Oh man, we've had a lot of conversation about this.
Yeah, it's it's very cyclical. I think for us, you know, when I was growing up, I would definitely have months where I was not literally diabetes high, but just high on life and really excited and full of energy. And then I definitely had points where I was really low and upset that I had diabetes. You know, the one person that I knew that really wanted to be an astronaut, and literally couldn't because of this disease, you know, somehow I was chosen to have this disease, of course. So I went through all those emotions and those feelings and my parents were always there. They always supported my dream. And they really stressed to me the importance of working hard. And I will tell you, engineering is hard work. And it is hard to get through engineering school, even if you're really passionate about it. And so that support was priceless. I know my mom, you know, see Susan emotional person. And I think she was sometimes afraid that I wouldn't be able to sort of realize some of these dreams. And it's so great. Now, you know, I'm in my early 30s and I have my dream job. And I send her picture hers, you know, for Mission Control probably every week, just because I think it's really cool. And, you know, seeing her and the being able to decipher that, hey, like, we made it together. It's not it's not just me. I mean, they did so much to help me and my poor Mom, you know, she's, she's not the most most into space, but she like dragged herself to those space museums that me and my dad wanted to go to Oh, man. Sometimes she would be doing her crocheting over in the corner. So bless her heart. She was such a trooper. through all of that, but I think it's really important now to, for her to see, you know, these moments in my life. And now she gets to share those with other people that she meets that, you know, maybe they've just had a diagnosis like this, or they know someone going through an issue that's, you know, putting up some barriers and she can say like, hey, look like we got through it. It's totally doable. I think that's the key, it's doable, and it's going to be tough. But if you want something, you need to just go for it, and it'll absolutely work out. So we've just sort of on and off had those conversations, you know, let's see, I've had diabetes for 20 years now. So the last 20 years, I would say there's been conversations like that
throughout the whole time. Wow.
Stacey Simms 38:48
Well, that that's great. I'm so glad that you've had this conversation with your parents, you know, as a as a mom have a son who is figuring out what he wants to do, you know, and we don't want diabetes to hold him back. Don't mind saying I find your story incredibly inspirational. So April, thank you so much for joining me. And, you know, I'll be following you on Instagram and elsewhere and looking for those pictures of Mission Control and everything. Thanks for joining me
April Blackwell 39:13
so much more about April at diabetes dash connections come and I'm going to talk about her had a really emotional reaction to something. I'll share that in just a moment but first…
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before I move on from April Blackwell, in her terrific story, I just want to share one more thing. So when I, when I talked to all the guests, I always grab pictures of them, right? You see that on social media, when we put the episodes out or at the episode homepage, there's usually a picture of a product or the person or you know, the crux of what we're talking about. And often they email me photos, but sometimes I scroll through just to kind of see which one I'd want. Then I can say, Hey, can I grab that one picture or whatever. So I was doing that with April. And I came across, and I'll see if I can get her permission to share this in the Facebook group. She has a picture of herself dressed as an astronaut. And that picture is from about and that picture is from, you know, she was diagnosed, she was diagnosed at the end of December. So it's Halloween. I mean, it's just really a couple of weeks before she was diagnosed and seeing her as a little girl, knowing what she wanted to do, and knowing where she is now. And just I guess I could have been sad about it because I got very emotional. And I guess the reaction could have been, oh, it's too bad that you didn't get to be that astronaut but my reaction Was this? I mean, I really got emotional, it's kind of embarrassing. Was this, this swell of admiration, I'm not sure I'd be that strong, whether I was 11 years old or, you know, an adult, to be able to turn that situation into what she has been able to do with it. You know, and as she mentioned with Ernie Prado, who also works at NASA, and you don't have to be a you know, an aerospace engineer, to just kind of overcome what type one throws at you. And I think that's what happened when I saw that photo. I just thought, gosh, you're all of you.. All of you just have to be strong. You know, even if you don't feel strong, you kind of have to be you kind of have to be and yes, parents too, but it's a different kind of strong for us, right. That's a that's a different story altogether. So I'll see if April will let me post the photo and I wonder if you'll have the same reaction that I did. Foot boy What a great story and I can't wait to follow along with her. It's nerdy April I'll link it up in the show notes on her Instagram account
on her Instagram account
all right time for Tell me something good brought to you by our friends at real good foods. And this one is real good foods. And I know it's a podcast and I shouldn't be saying things like you got to see the picture. But you got to see the picture. And I will post it in the Facebook group. I will be posting it later this week on Instagram as we start posting the Tell me something good stuff. But Amanda lovely. posted a photo of her kids celebrating what they call their last Lantus party. And she says the reason they were having a party, Annika, who is her daughter with type one is 10. It burns right Lantus burns a lot of people if you're not familiar, this is a long acting insulin. This is a commonly used long acting insulin. And Amanda said that Anika isn't a fan. This was a big moment. The picture shows as they're having their last Lantus party, Anika with two of her siblings in party hats. party hats, so it's Nina and chi and they are hugging her and everybody looks like they're having a It looks like a birthday party. I mean, it's really cute. And apparently Malin, who is five but not in the photo was also wearing a party hat. party hat and the dog was as well but not pictured Amanda, you got to send us a picture of the dog. But they were really excited and supporting their sister, which is why this is the Tell me something good. Not so much about the pump start although I'm sure she appreciated that and that's fun too. But, too, but it's always just so nice to see a family kind of get behind each other, right? I mean, gotta have that kind of support.
And I will say that if Lantus burns, you or your child know that there are long acting alternatives, not just switching to an insulin pump. And by the way, Amanda make sure you save some of that long acting just in case you have pump issues, right? You know, you never want to have no long acting on hand, just in case talk to your endo. But if you're having an issue with Lantus, ask about switching, there are other long acting's out there that don't burn as much and that work differently, but that's definitely an endo level decision. Do you have a Tell me something good story. It can be anything from a diversity a milestone of a last Lantus party. We have lots of fun stuff to share. And I love telling your good stories. You can always email me Stacey at diabetes dash connections. com or post in the Facebook group message me, you know, send a carrier pigeon, whatever works for you. We will be sharing these pretty far and wide this year. And I'd love to hear your story.
With the time shifting nature of podcasting, as I've mentioned before, you know, sometimes and recording before things are happening that I want to talk about, and then they'll the show airs afterwards. And all of that to say, a lot of you've been following along with Benny, who has been on crutches for six weeks. And as I am taping this, he is hopefully getting the word in the next couple of days that he can be off crutches, and maybe start some physical therapy. So next week, I hope to tell you a little bit more about that. And we're also going to the endo, which is a really good time for me to interview Benny because we're alone in the car and we're in the same space for once because that kid is so busy, I don't even see him half the time. But I'm going to try to talk to him about control IQ in the last year and lots of things changes he's made. Control IQ and things that have gone on since we've last talked we've made some other changes. And you know, he's just a different kid than he was even a year ago which is kind of breaking my heart and kind of fantastic but Boy, it's been it's been a big year for him. I don't know about you. But when my kids went from middle school to high school, it wasn't it wasn't just a different school. It was like a different life. High School is very different. The schedule is different. The work is different. And I remember with my daughter, who is now a freshman in college, and as you're listening is going back to school next week to do her second semester there. It just flies by it goes by so quickly. So I'm trying to hang on for dear life. And hopefully Benny will will talk to me talk to you, and we'll get him on the show as well. Tons of events coming up. I'm not even going to run down the list. I will ask you though, to go to the community page at diabetes dash connections calm. You can see where we've been where we're going. I've got a kind of a de facto book tour, because I am the world's worst diabetes mom, which is taking me on the road right now but two events a month. You can see them on the community page and see if I'm coming to your town. And if not, and you'd like me to come speak or tape a podcast or whatever. Just let me know.
Just let me know. Next week, just let me know. Alright, later this week we have our second minisode. This one's going to be all about sleep overs. What worked for us, I had some questions about that. And I'm answering them. So we're gonna be talking about sleep overs. That episode will air on Thursday, January 9, and then our next regular interview episode will be next Tuesday. Thank you, Tuesday. It's gonna take me a little time to fall into the rhythm of this, but I think it's gonna be a lot of fun. Let me know what you think. As always, the show is here for you. Thanks, as always, to my editor, John Bukenas from audio editing solutions, and thank you so much for listening. I'm Stacey Simms, and I'll see you back here on Thursday.
Transcribed by otter.ai
Do you share your CGM graphs and A1Cs online? Why?
Stacey talks about the trend of sharing everything on social media and wonders if what she learned in her radio career might help us all make sense of when and how to better share.
In 2020 we're adding these mini-episodes to the weekly line up. Each Tuesday you'll hear the regular longer format interview shows. Thursdays will be these Stacey-solo shows.
Get the App and listen to Diabetes Connections wherever you go!
Show transcript (rough copy so please excuse spelling, grammar, punctuation)
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 audiobook. Learn more at diabetes dash connections.com
This is Diabetes Connections with Stacey Simms.
Welcome to something new on diabetes connections. I'm your host, Stacey Simms. And this is a mini sode, a very short mini episode. I'm going to be doing these in the new year. Just me sharing some thoughts, advice and experience. Please keep in mind, everything I'm talking about here is only through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. And I am the author of the world's worst diabetes mom. So keep that in mind as well. One of the questions I get All the time is why don't I share Benny's numbers? Why don't I share my son's A1Cs? Why don't I post more graphs? I do occasionally show some CGM action, you know when I'm trying to prove a point or talk about stuff. But why don't I do that more regularly and especially the A1C numbers? Well, I really did share them for a long time.
Benny, he was diagnosed right before he turned two and social media wasn't as big a thing in 2006 when he was diagnosed, but a couple years later, it was and I shared them on Twitter and Facebook until he was about seven, I'd say. And then I became friends with Moira McCarthy, who is a very well known author, blogger. She helps me out on diabetes connections as my co host of the Ask the D mom episodes, and she asked me to think about why I was doing that. And it really did did took me back. I took a step back on that. And after I thought about it for a while, I did stop sharing them. And here's what really helped me. It's one way of looking at it. That might sound funny. Radio really helped me make more sense of how I felt about diabetes numbers. If you're not familiar, I worked in radio for a very long time I started my career while I was in college, at a radio station. I worked at WSYR, I was the weekend reporter in Syracuse, New York for the old news station there. And then after college, I was a local TV anchor and reporter for many years, moved to Charlotte, North Carolina, where I live now in that capacity. I work for the CBS affiliate as a TV reporter and anchor for a couple of years. But I went back to radio for a decade and I did mornings at WBT, one of these big heritage radio stations.
So my old Program Director, Bill White, used to caution us against putting too much stock into the ratings. You know, you get these Nielsen ratings, at least you used to in radio, and I want to say you got them every quarter. And these were the ratings that would give us I mean, not just bragging rights, which was a lot of fun to say, you know, we're number one in the market or you know, we're number two or whatever. It was, but they would also set the commercial rates, right how much the sales people could charge for a commercial at any given time on the radio station. Now, it changed a lot in the time that I was in radio, because the ratings systems switched from Nielsen ratings, which were you were writing down what you listen to, I don't know if you ever had one of these Nielsen books, but that's what it was, you would get a physical book. Remember those pen paper like a workbook, and you should write down what you listen to. That's why so many radio stations repeat their call letters a billion times, or at least they did back then. Because they wanted you to remember the call letters when you got your little Nielsen book. So if you're listen to radio station, they're always like news, weather, traffic, you're listening to news talk 1110 WBT, you know, why did we say it a million times an hour, we needed it to stick in your head so you would write it down. But then, really just a couple of years before I left radio, the portable people meter, the ppm system took over and changed everything.
So ppm, if you're not familiar, is a system that was developed, I want to say by Arbitron, but now part of Nielsen. So it's like a pager almost, and you wear it. And it detects hidden audio tones, I kid you not within the audio stream, so it logs every time it finds a signal. So a ppm basically picks up when you're listening. And when it came through, there was a lot of talk about is it accurate? Is it biased to younger people who are going to walk around with this thing as opposed to older listeners who can't be bothered, you know, will it pick up stuff in gas station stores that play music or restaurants you know, blah, blah, blah, doesn't matter that ship has sailed. The ppm is now how radio stations get their ratings and it changed everything which is a story for a different time. But I will say if your your local fun morning show is talking less than playing music more, or you're hearing some changes, really you would have heard these almost 10 years ago now and the way you listen to radio Do it was because of ppm and you know now it's debatable whether radio podcasts streaming, that's a whole other story. But so ppm for us really changed the numbers.
Our radio station WBT never really sold on those numbers strictly though, because we had a very desirable audience. We had an older audience, our audience had more money, they were more loyal. They were really apt to buy what we were selling. So we did not have to live and die by the ratings, thankfully, and that is what Bill warned us against my program director. If we got so caught up and excited about the really, really good ratings, would we be devastated by the bad, right where we doing a good show where we serving our listeners, my co host, used to say, super serving our listeners, you know, where we doing all we could for our clients, you know, we were doing all this at 5am where we're doing everything we could do, and that's what we were supposed to focus on. Bill's point was Don't let the numbers run your life. Life and a new station. This is really important. Think about when you might listen to your local news station, you might listen when there's a power failure and you need that radio, you might listen when there's a huge news story, you might just listen occasionally. I mean, in the olden days, you'd listen for school closings before the internet. So we'd get these, these spikes that were very attributable to events, right. And then we would get these lows, that maybe were also attributable to events. But if you got emotionally caught up and thought, oh, all these people are listening, because I'm so great. Then you could also get emotionally messed up when you're thinking they're all tuning out because of me. So you can't put the numbers before what you're supposed to be accomplishing. As a news broadcaster. We were there to inform, to entertain a bit sure, but to inform. And I think Bill's advice is really applicable to diabetes.
Look, of course, numbers are important. Of course, we need to pay attention to them, but We can't run our lives around them, we can't let them have the emotional power that many seem to want to give them. I mean, I've been guilty of this too. But you have to step back and recognize they are information, they are guidelines, they are not your value. If your self worth is coming from your child's or your A1C, I'd really encourage you as Moira did to me years ago, step back and think about that, think about why. And then I would encourage you to try to move that good feeling off of those numbers and onto other ways that you're dealing with diabetes. I mean, for very young children. I mean, that can be such a roller coaster. The victories for me, were the smiles with grandparents, you know, bedtime snuggles, milestones like potty training, you know, even when your your little kid learns to share, right? These are all ways of celebrating and as your kids get older, participating in sports or in the school play, getting their drugs permit Ben he just got his somebody come hold my hand. Oh my god. But these are things to celebrate first date, right? Oh my gosh, these are ways to celebrate with diabetes that aren't about the numbers.
Just thinking back right? What stands out if you have older kids, or if you're an adult with type one, what stands out for you? Do you remember that excellent doctor's appointment? Or do you remember feeling really good and doing something that you loved? Because you have to be in range have to be taken care of yourself to be feeling good at these times is all is my point. But you're not focusing on the actual number right? If you're calling your endo appointment, mommy's report card, I am talking to you. Because what happens is, so many people share only the so called good numbers, right? But they don't want to share the so called bad ones. Because if you have publicly celebrated, let's just say a 6.5 A1C you may feel really bad about 7.8 or higher? I mean, let's be real here.
And something else to keep in mind. And maybe the most important thing is that for parents, you're making these choices for your kids. You're putting their health information online, you're putting it out there adults, this is different for you. I mean, these are your choices. But parents, you're making a decision for your kids and you're really not getting their okay. And I don't think a seven year old can really decide if it's okay, right. Remember, if you're in a private Facebook group, nothing online is private, nothing you're sharing online once you hit send, or put it out there. Nothing online is private. And that's really the biggest reason why I stopped sharing Benny's A1C. I decided there was no reason for me to leave a breadcrumb trail of health information on the internet for someone and employer and insurer, anybody to find when he was an adult, I don't care how good his numbers have been. And trust me they're far from perfect. Sometimes they're No need to share that.
One more thing. There is a school of thought that you don't even need to tell younger children what their A1C is. And I wish I had done that. I mean, I don't really think Benny ever knew until he was out of elementary school. But a lot of endocrinologists are now writing it down and showing the parents if you're in the room together, or maybe emailing it to you later through a health portal, which is protected by HIPAA in a way that Facebook obviously is not. And I think that's great, because you can easily find ways to celebrate or mark time with your kids or, you know, hey, we're at the endo and that's always a reason why we do. We go to a movie, we go shopping, we do a special high five, whatever works for you. But you're not celebrating the number per se.
And back to Benny for a moment. Here's how I know he didn't know what his A1C was when he was little. He had a nurse asked him once he was a camp so he was in a not normal setting. And the kids were eating ice cream and I don't know why the nurse was involved. Maybe they were doing it at the health center. Who knows But he asked for his ice cream. And she said, Oh, I don't know. Should you be eating this? What's your A1C? He was about eight, maybe nine. And he said, I don't know. He turned around and found another nurse and said, Can I have the ice cream? She was like, yeah, sure, Benny, no problem. And, you know, he told me that story when he came home from Camp, but I was kind of glad he didn't know. And I was really glad that he was smart enough to find somebody to give him the darn ice cream.
I am not trying to be a killjoy here. You know, we all have what works for us. But I urge you try this. You may find it incredibly freeing not to share your numbers not to share your child's numbers. Come on, you are all so much more than the A1C or the last 24 hours on a graph. Right? You're not raising a number. You're raising a child. I hope this gives you something to think about.
Agree. disagree. Remember, I am the World's Worst Diabetes mom. And the book is available on Amazon paperback eBook and audio book and it's available at diabetes dash connections. com where you can always find out more. I hope you come back for our regular full length episodes. Every Tuesday, we feature interviews with newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people, quote unquote just living with Type One Diabetes. I’ve been doing the podcast for four and a half years now, and I really hope you find episodes that you love.
I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Transcribed by Otter.ai