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.
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The interview features everything from breast feeding, diluted insulin, pump and CGM use in babies and much more.
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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.
Announcer:
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
Depends.
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.
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(Stacet)
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