Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.

Minisode #3: What I Want From Tandem's Control IQ 01/16/2020

Minisode #3: What I Want From Tandem's Control IQ 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. Transcription below! Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- 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! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by “The World's Worst Diabetes Mom, Real Life Stories of Parenting a Child With Type One Diabetes,” available 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 /episode/index/show/diabetesconnections/id/12704960

All About Babies and Toddlers with Type 1 Diabetes 01/14/2020

All About Babies and Toddlers with Type 1 Diabetes 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. Check out Stacey's new book: The World's Worst Diabetes Mom! The interview features everything from breast feeding, diluted insulin, pump and CGM use in babies and much more. Join the Diabetes Connections Facebook Group! Resources: Facebook groups: Learning to Thrive: Type 1 and Toddlers Diapers & Diabetes 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. Sign up for our newsletter here ----- 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! Click here for iPhone Click here for Android 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... /episode/index/show/diabetesconnections/id/12704678

Minisode #2: Sleepovers & Type 1 Diabetes - What Worked For Us 01/09/2020

Minisode #2: Sleepovers & Type 1 Diabetes - What Worked For Us Are you worried about sleepovers? Wondering how to plan? Stacey answers a listener question and explained what worked for her and Benny. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- 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! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 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 Announcer 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. /episode/index/show/diabetesconnections/id/12632663

Working at NASA's Mission Control With Type 1 Diabetes 01/07/2020

Working at NASA's Mission Control With Type 1 Diabetes 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. Check out Stacey's new book: The World's Worst Diabetes Mom! 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. Join the Diabetes Connections Facebook Group! In Tell Me Something Good, a milestone for a tween with T1D – and her whole family gets in on the celebration. Sign up for our newsletter here 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! Click here for iPhone Click here for Android 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? April Blackwell I'm doing wonderful. How are you? Stacey Simms 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 Of course, 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. Right back to April answering that question in just a moment, but first, diabetes connections. is brought to you by real good foods. Have you tried them yet? high protein, low carb, grain free, gluten free. They have so many delicious products from breakfast sandwiches to pizza. The stuffed chicken is delicious, the little poppers that they make are just excellent. You know, it's really nice to have something convenient when you're not in the mood to cook or if you're a 15 year old boy, you know you're starving and you need something to get you between the half an hour before dinner. So Ben evil just get a little personal pizzas and heated up. We're really big fans of really good foods. I'm thrilled to have them back on the podcast for the new year. The new year and I'm excited to try some of the new products they have out right now. And I'm excited to try some of the new products they have out right now. We will be bringing you some taste tests as we go forward. But find out more and go to their store but find out more, go to diabetes dash connections dot com and click on the real good foods logo. now back to April talking about what happened after high school. Let's go now back to April and I'm asking her about what happened after high school How did she get to where she is now 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... /episode/index/show/diabetesconnections/id/12614933

Minisode #1: Stop Mindlessly Sharing All Your Diabetes Numbers! 01/02/2020

Minisode #1: Stop Mindlessly Sharing All Your Diabetes Numbers! 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. Check out Stacey's new book: The World's Worst Diabetes Mom! 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. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- 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! Click here for iPhone Click here for Android 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. 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. Benny 12:34 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged Transcribed by Otter.ai /episode/index/show/diabetesconnections/id/12575093

Control IQ Gets FDA Approval: All About Tandem's Hybrid Closed-Loop System 12/30/2019

Control IQ Gets FDA Approval: All About Tandem's Hybrid Closed-Loop System Tandem's Control-IQ system was approved by the US FDA in mid-December. In this episode, Stacey talks to Molly McElwey Malloy, Tandem's clinical outcomes manager with behavioral sciences. Check out Stacey's new book: The World's Worst Diabetes Mom! Control-IQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).* Check out Tandem's YouTube channel, featuring new videos about Control IQ Join the Diabetes Connections Facebook Group! This is our last episode of 2019! Stay tuned for new sponsors, new segments and new weekly mini-episodes. Sign up for our newsletter here To use Control-IQ, you must have the Tandem t:slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump.. it does not require a purchase of new hardware.. no new pump needed. You do need to have a prescription from you doctor. If you are an in-warranty customer the Control IQ update s free. All software updates released through 2020 are free to in-warranty t:slim X2 users. It doesn’t matter when you choose to download the update. The no-cost is determined by our release date, not your download date. ----- 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! Click here for iPhone Click here for Android Episode transcription (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors) (Time codes listed refer to times within the interview, which starts 5:30 into the episode) Transcript: This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes, available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Welcome to our last episode of 2019 and it's a big one all about Control IQ the new hybrid closed loop system from Tandem recently approved by the FDA. I'm talking with Molly McElwee Malloy from Tandem. And I'm going to try to keep this intro short. I know you all just want the information. But I do have a few housekeeping and other things to get to. You can always skip ahead if you wish, I will not be insulted. But first while my regular podcast listeners insulted first when things like this happen when there is a Big news in the community. We get a lot of new listeners. So I want to go through some basics first. Hi, I'm your host, I'm Stacey Simms. My son was diagnosed 13 years ago, right before he turned two. He is now freshman in high school. He is 15. And boy, time has really flown. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting, local radio and TV news. And that is how you get the podcast. We are four and a half years into this podcast. We have more than 260 episodes. So I would encourage you to head on over to diabetes dash connections. com If you're brand new, scroll through. There's a very robust search feature. So if you want to type in Tandem and see what we've done over the years leading up to this release, or any other topic pertinent to diabetes, you can go ahead and do that it's very easy to search through. It's very easy to search through, and everything you'd want to know about the podcast, including how to subscribe for free on whatever app you want to use. Joining the Facebook group all about me, it's all there on the website. Okay, let's talk about Control IQ. What is it? Control IQ technology is an advanced hybrid closed loop system. It is the software within the pump. It uses an algorithm to automatically adjust insulin in response to predicted glucose levels. So we're going to talk about that to help increase time in range. Time in range and the recommended target range is 70 to 180. And yes for the International listeners we have quite a few. This is a USA centric episode Control IQ is rolling out in the US. We will be staying up to date on when it is available in the rest of the world where Tandem is already in your marketplace. But this is a USA centric episode so when you hear us talking about numbers, that's the system that we're using. For Control IQ you must have the Tandem t slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump. It does not require a purchase of new hardware, no new pump is needed. You do need to have a prescription from your doctor and you will hear more about that if you are an warranty customer, the Control IQ update will be free. All software updates released through the end of 2020 are free to in warranty t slim X to users. It doesn't matter when you choose to download the update. The no cost is determined by Tandems release date, not your download date as we're right at the beginning of 2020. That probably doesn't matter to most of you listening but I think it's important to point out. Control IQ is FDA approved for those 14 and up. It is not a replacement for diabetes management. And it is not a cure. It is not a cure. There is so much information about this online already from Tandem. I will be linking up a lot of stuff on the episode web page. They have YouTube videos. There's so many features that we don't even get to in this interview. I mean, the tubing fill, you can now set that to vibrate so it doesn't beep when you fill the tubing and change the cartridge which I know Benny just so excited about but in this interview, we really just scratched the surface. So please know I will be doing follow ups and there's a lot of supplemental information on the website. Quick note about Molly McElwee Malloy, who I'm talking to from Tandem, she was diagnosed 22 years ago this week as a young adult. And as you will hear, being in an artificial pancreas trial, changed her life. It changed her career path, everything. And she is one of many, many people who has been with this project for a very long time. We do spend the first four minutes of this interview on that subject on who Molly is and getting to this point. And if you're dying to get Control IQ info, again, go ahead and skip ahead. But I think her story is an important part of all of this and I think it sets up all the information very well. One more thing. There will be a full transcription available for this interview. A lot of you have been asking for that. That's a new feature I'm making available for the podcast in 2020. So stay tuned on that for every episode, but this transcript will be right on that episode web page. The best way to read it go to diabetes dash connections. com scroll down and click on this interview to open it up. All right here is my interview with Tandems, Molly McElwee Malloy, Stacey Simms 0:01 Molly, thank you so much for joining me. I can only imagine how busy you are and how full your inbox is. Molly McElwee Malloy 0:08 It's a really exciting time. For sure. Absolutely. No doubt. Stacey Simms 0:15 Well, congratulations. We're very excited. I mean, personally and professionally. I can't wait to talk to you about this. So let's just jump right in. I do have to ask you though, for people who may not be familiar, tell me a little bit about your background because Boy, you have been with this project. Really, I want to say almost since day one, tell me about your involvement with what has led to Control IQ for Tandem. Molly McElwee Malloy 0:39 So I'm, I'm sort of what you would call like the obsessed fan who went rogue. So I, I was in an artificial pancreas prior in 2006. And full disclosure, because no surprise to anybody who knows me but I have a bit of OCD. And for me, that was manifesting is testing my blood sugar 30 times a day. Wow. And yeah, it was really out of Control. Or as most, you know, endocrinologist say, I was a perfect patient with zero Mental Health Quality, but life like it definitely was impacting my quality of life. But I participated in one of these trials. And it was, you know four IVs and somebody at your bedside for 32 hours and the whole nine yards, but for me, it was life changing that for a period of time, I could relax for the first time and just let somebody else take Control. And everything was fine. And I sort of just realized that deep breath at that time was exactly what I needed. And I and I was like, Well, I'm going to do whatever it takes to work on this project. So you know, at the time, I was a professional musician, which makes getting into science.. Stacey Simms 2:05 Be vert interesting, Molly McElwee Malloy 2:06 Just a super, super easy transition (laughs). As logical obviously, as you've spent your life, being a musician that makes sense to just go into science. So I went back to school for nursing and continued to participate in trials through nursing school. And then when I graduated they hired me on at the Center for diabetes technology at the University of Virginia, which is where all of this magic was taking place. And I have not looked back. So they hired me in 2010 have been acquainted with the algorithms since 2006 as a patient, and here we are, it's almost 2020 it's 2019. And it's finally getting to market so I've done that and I worked with a startup called Type Zero technologies, which commercialized The algorithm licensed it the Tandem diabetes care. And then I jumped over to Tandem to pursue commercializing the algorithm. So, a little bit of like a dog with a bone, go and fill it out. But it was sort of my glimpse at sanity. Like, this is what sanity, this is what my life could look like with diabetes. If something was managing it in the background, I was really only worried about the big things. And I saw that and I was like, that is exactly what I will do. That's what I'm gonna be doing. I will do this all the time until it gets there. And it is. It's been a very long journey. very rewarding journey. Very difficult journey, but to be here today, wearing the device is magical. Stacey Simms 3:54 Okay, I'm gonna stop you there. I could talk to you for a long time about the process. But as you listen, I know you want to get to Control IQ. So I will just say, I've talked to Molly a couple of times before and I will link up the other episodes because the background on this, as you mentioned, type zero, you know how Tandem came to have that software, the development of all this, it's really important. And it's really interesting to listen to. So I will link those episodes up. But let's talk about Control IQ, so many questions. What are the what are the first steps? What's going on right now. Molly McElwee Malloy 4:27 So because of this all happening right around holidays, what we're doing with him doing kind of behind the scenes and, you know, as we speak up through the beginning, or first two weeks of January is we're educating the whole you know, diabetes educator and endo workforce, getting everybody up to date, getting everybody ready, making sure we're on the same page. So that when you go to your endocrinologist and say I want this you know that customer, they are well informed of what's going on. So all of that's been going on in the scenes like, you know, just earlier today I was on the phone with 10 different doctors trying to make sure that we all understood everything. So we're, we're educating as fast and as seriously as we can. We have an excellent online training program. So you as a customer, if you are current X2 user base, like you are just x to the end user will get an email, and I believe it's the first the second week of January way of January 13. That week, you'll get an email saying, hey, go ahead and login, update your information, make sure everything correct when you get the prescription will, you know will we talk to your doctor and will help you if you're an existing customer with we have that information kind of fully loaded, ready to go. You could also log into the portal, the customer portal and you know, go ahead and start that process. I'm interested, I want this and talk to your doctor. That's all that's one place. It is super easy scripts with your doctor that gets loaded. It's an automatic process. Once we have that, if you've already got that, like a blanket prescription from your providers practice is already going with us and we're trying to initiate that next two weeks. That's already there, we will automatically check on the background and then it will, you know, provide us with going ahead and giving you the green light to issue the next email which will be your training is ready. And then you will do the online training. And it will give you the ability to learn all about Control IQ. It's very interactive, you can't hit play and walk off. I know people do this on other training like I know we have webinars and we push play and we walk off we do the dishes when we come back. You cannot do that with this. It actually won’t advance to the next part until you've done x, y, z that is asked you to do. We've designed that for a reason so that you actually come away with the knowledge you need to operate the the algorithm and integrated into your life. So then you will answer a couple of questions and take a quiz. And you will have had to pay attention to get this information correct. And if you don't, you can go back and re learn until you do answer the questions correctly. Once you do pass the quiz and the module, you will then get the download code which is specific to your serial number of your pump. So I know there's been some questions, people sharing about work arounds, can you share it? The answer is no, no. You can't share it. It is your learning and your code is specific to your serial number. So all of that lines up perfectly to allow you to download the software update. And that will be, you know, everything will walk, walk through all the steps and pretty obvious, but for those who think that this some idea that someone will get a code and then we could post it on the internet somewhere and share it like, sorry Debbie Downer you're gonna have to get this on your own. Like, we work smarter than that and the FDA is smarter than that, and they're not gonna allow one code to rule them all. Yeah, so everybody's gonna have to do this upon their own and because it requires a prescription you have to go through all this stuff. Stacey Simms 8:37 When you mentioned training healthcare providers, and this might be a really dumb question, Molly, so forgive me, but is do they go through a more in depth training? It just seems like a couple of weeks to try to get all of these endocrinologists and CDs on board is a tall task. Do they all have to be trained before they can write the prescriptions and then what is their training like Molly McElwee Malloy 8:59 this have to be trained before they can write the prescriptions we want them to be trained before, obviously, we'd like them to have knowledge before they write the prescription, but they don't, they need the training to be able to treat patients, right. And I want them to be we want them all to be informed before they write the prescription to know if this is a good choice for the patient. But you could always write the prescription and then the person doesn't do the update. Right. So there's, you know, there's, there's always a couple ways to be kept it at the end if they don't intend to write the prescription. But writing the prescription with knowledge is always excellent. And we want to be aware, it's really, you know, an hour and a half two hours of their time. It's not a whole day thing. I know with other systems, there's been some feedback about like the links of training being really long and and we took all that into consideration. You know, we got the beautiful gift of not having to go first. Right? So we got to see what happens with the market with feedback before we did it. And we implemented a training and the good news with Control IQ is, it's not difficult. You do have to understand some concepts and some differences. Right, but it's not hard. Stacey Simms 10:27 I guess my concern was that people would be calling their health care providers and saying, Are you trained? Are you trained? Did you do this yet? Because you could see that happening. Molly McElwee Malloy 10:35 Yeah, and the good news is that we're getting them trained. So and it's on there's an online module they can take to do this. Like it doesn't have to be me on the phone with somebody train them, although we are doing that for them for larger offices that need, you know, to have that interaction, but there is an online module that they can take to get trained. So we do have a provider but site that has been launched. We've been very patient centric and very patient forward and our website and our outreach, and we are adding new dimension to both Tandem and our website, and how we are looking at our business. So, you know, to be honest, when you do this business, there's, there's at least three customers you're looking at, right? There's a patient, there's the provider, and there's the payer, and all those things need to be addressed. And we've been very patient centric. And now we are and we are continuing that we're just expanding to be very have people that are actually focused on providers. And so there is a portion of our website now dedicated to health care providers, and their education and resources specific to them. So that is launched that is up and running, and it's actually a very elegant website a host of resources for healthcare provider. Stacey Simms 12:10 Alright, so let's get to the moment at hand - Control IQ. How does it work? Talk to me a little bit about you know, the pump settings or what do we have to do you? What is the? What is the basis of Control iQ? Molly McElwee Malloy 12:24 Yeah, so this is the beautiful thing and I love all things that are based in science reality and truth, right? Like, I don't like we and Tandem doesn’t like this either, but we don't like you know, don't let trick and we don't like you not be able to see what's going on. So the beautiful thing about Control like you would like about all of Tandem technology is that it stays in the science and the foundation that you know in love, which are pump settings that you already understand. So the traditional rules that healthcare providers have used and I can provide you a link to article that’s helpful on you know 15 and 1800 you know, rules that they've always used and you know, implement duration action that is built in on the foundation of many many many decades of science. So, the all of that I can provide you some links and educate people about that what does that mean but your traditional insulin to carb ratio, sensitivity factors and basal rates all still apply. We use that the Control IQ technology uses your pump foundations and your foundations order the basal rate into the carb ratio, correction factor to operate from right so those are specific to you, they always have them they always should be. And that is where we you know, we start the game of Control IQ technology. So Using those settings, Control IQ technology, what we making adjustments from your baseline parameter, so your baseline parameters are exceptionally informative of how Control it technology will work. Stacey Simms 14:12 So we've been using a pump, let's say, you know, our personal case for 12 and a half years, we're pretty good at the settings. You know, we're going to talk about insulin on board because that's an interesting change. But we have our ratios and our, you know, our sensitivity factor. People like us, you know, a lot of people who are used to changing things on their own, you're basically... /episode/index/show/diabetesconnections/id/12555608

Planes, Trains and Type 1 Diabetes: Catching up with Jason Viglione 12/17/2019

Audio Excerpt: The World's Worst Diabetes Mom 12/11/2019

Audio Excerpt: The World's Worst Diabetes Mom Listen to an excerpt from The World's Worst Diabetes Mom: Real Life Stories of Raising a Child With Type 1 Diabetes! If you like what you hear, get the audio book for FREE. Diabetes Connections listeners can use this link to get one free book and one free month of Audible! You can also find the book here if you're new to Audible and here if you want the paperback - eBook - or audio directly through Amazon and you're already an Audible member This chapter is all about using social media to thrive with type 1 diabetes. But of course, it's also about the many mistakes Stacey has made along this way. Hear the story of how she bolused her purse, instead of her child. Read the transcript below Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Transcript of the excerpt: "I think there’s an argument to be made that we can get more out of social media when we share our mistakes and worries than when we only post when things are going “right.” I know a lot of people love to share straight CGM lines and big and small victories, and that’s great. I love to celebrate along with you! But over the years, I find I have more of an impact and get more support when I pull the curtain back and show what’s not going right for us. The first time I realized this was a scorching summer Saturday in 2010. Benny had just finished Kindergarten and Lea, 4th grade. It was 101 degrees in Charlotte. I took the kids out to and then to a nearby splash pad. It was exactly what we needed and we spent the afternoon inside at home, trying to beat the heat. The afternoon blood sugar check was a shocker: 500 BG. Big bolus, but an hour later Benny said he didn't feel well. At this check we got HIGH GLUCOSE! No ketones, thankfully, but something was very wrong. The meter remote was across the room, so I asked Benny to take his pump out of the pouch he wears around his waist. That’s when the problem became very clear. He had no pump to take out. Uh oh. Even though the pump we used was waterproof, we usually took it off when Benny was in or around water. It wasn’t the rough play – the insets stayed on just fine for that kind of thing and the pump is durable. But Benny usually went low during swimming and taking the pump off helped keep him steady. Note: this definitely depends on the person. As Benny gets older and bigger, the energy he uses for swimming and water play has changed. When you think about a 5 year old swimming, think how exhausted they get – they use their whole body every second! A 12 year old is still very active but might be throwing a ball in the pool and hanging out for hours rather than swimming nonstop for 30 minutes. We found as he got older, we needed to increase the basal rate for a couple of hours after swimming if we’d disconnected for more than an hour. As I said earlier, check with your endo about disconnecting a pump and/or adjusting the basal rates on a waterproof pump or pod. Many people have also found success using long-acting insulin along with the pump (also called “untethered) or even switching back to multiple daily injections for vacations or summer if your child swims a lot. Whether your child swims for ten minutes or ten hours, you do need to put the pump back on! We had forgotten that part. As soon as I realized that, I immediately remembered what I had done. We’d taken off the pump and thrown it in my purse. It was still there, just blinking at me and dripping insulin. All that time I was giving Benny insulin using the remote meter, I’d really been bolusing my purse!! Once we figured that out, it wasn’t a difficult fix. We clicked the pump tubing back into the inset, did a giant bolus, checked ketones (nope) and refilled Benny’s water. I spent a moment wondering if I should wash my purse or just wipe it out. And if I’d ever get rid of the insulin smell. Ugh. 15 minutes later I grabbed the meter to see if the insulin had started working. Yes, I know it was too soon, but I was nervous and anxious and…. I dropped the meter. It slipped out of my hands, onto the floor and cracked. I have backup meters, but this was the brand new remote meter we’d only had for a month. After almost 4 years of pumping, we finally didn’t have to reach into Benny’s pouch to pull out the meter and could easily dose him while he slept. I didn’t have to turn around in the car while my husband drove and dig around in Benny’s car seat to bolus him for road trip car snacks! We loved that new meter. And now, it was all in pieces on my kitchen floor. Talk about feeling like the world’s worst diabetes mom. My kid was high because of my doofus forgetfulness. Our brand new amazing remote meter was in pieces. Surely, no one was as horrible a mom as me. I took my frustration to Twitter. If I tell you the responses were life-changing, I’m not sure that would be an exaggeration. Remember, this was back in 2010 when social media wasn’t was it is today. I wasn’t sure what I would get. Scorn? Judgement? Turns out, all I received was support: Here are some of the great responses: @kellyemmaellisThe Party Wizards @staceysimms oh no simple mistake!! At least it can be easily corrected with pump and Benny had been nice and active to take the edge off!! @SweeterCherise Cherise/LADA @staceysimms hugs! How's he doing? @DMomBlogLeighann D-Mom @staceysimms It happens. You realized it and are taking care of the situation. He'll be fine. ((hugs)) @Kate_Ireland123 Kate Banks @staceysimms diabetes is 24/7, you are not. You can't be perfect all the time. Its not your fault, you treated it, it's over :) @PortblPancGrl Stacey D. @ @staceysimmsglad he's ok! And hope his BG gets back to normal soon. Other people had done this. Other people made it through. They said I didn’t have to be perfect and that Benny would be fine. It’s hard to describe how much better that made me feel. I was still mad and frustrated, but I was no longer alone. I think I was just as relieved to hear that Benny would be okay – that this had happened before – as I was to see these other women not judging me. Not shaming me. They didn’t share the post and invite others to pile on. Instead, they supported me. I didn’t know them but they were willing to reassure me and lift me up. Of course, Benny was fine – his blood sugar came down, he was safe and happy and thought the idea of bolusing my purse was very funny. I called Animas and they overnighted a new meter remote. Ours was still in warranty (barely out of the box) so they were fine with a quick replacement. As you know, by now, this was hardly our first mistake. But it was the first time I remember admitting to one, publicly. It was incredibly freeing and it led the way for me to share more mistakes and missteps." ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android /episode/index/show/diabetesconnections/id/12361751

Diabetes Fitness & Nutrition Expert Ben Tzeel 12/10/2019

Living with T1D is a Marathon: Why Run One With It? 12/03/2019

Country Star Eric Paslay: Rocking On the Road With T1D 11/26/2019

Country Star Eric Paslay: Rocking On the Road With T1D Country Star Eric Paslay is on his Nice Guy Tour right now, performing around the US and the world. He talks to Stacey about managing type 1 diabetes on the road. Learn more and buy Stacey's new book "The World's Worst Diabetes Mom" Stacey & Eric also nerd out on podcasting a little bit.. he started his own T1D show – Level With Me - earlier this year. Join the Diabetes Connections Facebook Group! Tell Me Something Good this week… so much creativity this diabetes awareness month! Did you see the Bachelor with Diabetes. And an elementary school rallies behind a student with T1D. Sign up for our newsletter here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- Thanksgiving episodes Stacey mentions: Ask the D-Moms Holiday Version Thanksgiving Round-table: Adults with T1D ----- 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! Click here for iPhone Click here for Android Interview transcription Stacey: My guest this week is country music star Eric Paslay. He is touring right now I caught up with him, tpaslay his is several weeks ago actually but there's nothing dated here. I wanted to talk to him again. He was first on the show back in 2017. Because in addition to being diagnosed with type one at age 10. He is now a podcast host. He started Level With Me this year. I'm not sure if he's coming back with that or if it was a one season thing when we talked to him quite worked it out. It's a branded podcast with Dexcom. But we had fun talking about the technical side of podcasting, and what he got out of meeting so many people living with type one. So here is my talk with Eric Paslay. Eric, welcome back to the show. I'm excited to talk to you again. Thanks for joining me. Eric Paslay 7:29 Thank you, Stacey. Good to be back. Stacey Simms 7:31 Alright, so put your podcaster hat on. And I wanted to talk to you about that. Because truly, you know, doing a show like that is such an incredible experience. I'm not sure people realize how much fun it is to be on this side of the microphone, you know, talking to other people going through experiences with type one. What was it like for you to do that? Eric Paslay 7:54 It's just it was it was a lot of fun. I mean, you know, it's fun to get to talk to people. There's so many awesome podcasts. out there about juvenile diabetes, and you're a rock star with Diabetes Connections. And I think it was just fun doing Level With Me we get to go visit people, at their houses where they're at. And kind of you kind of hear what life's like with diabetes. I think a lot of times it's either you have diabetes, the world's ending or I'm overcoming and that's on everything, you know, I can do anything and a lot of times you don't talk about the in between and and I think that's what these podcasts are great for is just talking about these things happening. And with level with me, we just got to talk about real life of, of how spouses and parents like you know, you have a 14 year old son with diabetes, being a parent and just kind of all the day to day activities and things that you did to deal with having diabetes and it was just it was a lot of fun. As you know, there's just incredible people all around the world and it's fun meeting up with type one diabetics that really live life to the fullest. Stacey Simms 8:57 As I said, though, it's a different hat for you to wear well. What made you want to do something like this? Eric Paslay 9:03 I'm not just talking about, talking helps people get used to talking about stuff. You know, I mean, I think there's a lot of type one diabetics who hide it from the world. And it's like, how you go to work and no knows you're diabetic? What if you actually do have a crazy low sugar level happen? What are they going to do? They're just going to not know you're diabetic. You know, I think a lot of people are afraid to talk about it because they're either ashamed or they think they're not tough enough and it's like, you should be excited. We're like living in a time where we're we're getting to survive as diabetics. But you know, I'm not afraid of a microphone on and when we thought, hey, let's let's do a cool little podcast. I was like, sign me up. That sounds like a good idea. And, and it sounds like a great way to get to meet great people and, and just spread the news that you really can't do anything. With me traveling around on the road all the time. It's crazy, crazy, crazy life. of just traveling all the time. Not a lot of people, Lot early flights, late shows that it's cool. Just getting to talk about all the devices I know y'all talk about with the CGM Dexcom and insulin pumps and just all these cool things that really help you live life and not let diabetes get in the way too much. Stacey Simms 10:15 Yeah, let's talk about that. Because you know, you've been on the show before and shared a lot about how you do it on the road. But tell us a little bit about your routine these days with those early flights. As you mentioned, it's kind of a crazy schedule. Anything you've learned that you can pass along. Eric Paslay 10:27 I don't know protein bars don't have tons of carbs but they let me cruise for a good time. I've learned that, you know, I think it's it really is finally getting a CGM. It's like truly life changing. It's you hear the beats that beep beep bepp and you go Okay, I need some sugar or the beep and go Wow, my insulin is not working. You know, Everyone does that sound you know, in the middle of the night they're like, Oh, no. What do you think? Protein bar time. When did you start wearing a CGM? About a few years, and it's truly life changing, it's it really is mind blowing thinking 100 years ago, they figured out these proteins make a thing called insulin and keeps us alive. And to think that there's we're holding a small TV in our hand that tells our blood sugar level. Yeah, I mean, that we can share with friends on a phone is crazy. It's it's truly amazing to see how science and just it's just amazing science and technologies coming together. And it's exciting to see in the next even 10 20, 30 years, what happens with taking care of diabetes and just all kinds of sicknesses, just all the information coming together and people figuring it out. And you talk about on your show. There's just so many cool things happening. I got to do an amazing tour at Vanderbilt here in Nashville a couple weeks back with Dr. Powers. He's my doctor here and it's just exciting to see people doing such amazing research, trying to figure out the immune system And everything with beta cells. Everything that a type 1 diabetic is made out of, trying to reset all those things. It's cool to just just hear how many people really are out there trying to figure out a cure. And until we get a cure, figure out amazingly just easy ways to treat yourself. Stacey Simms 12:17 I'm curious with the CGM, you know, because you were diagnosed it 10 right? Yeah. What your mom and dad might think of a CGM. Do you share with them now as an adult? Eric Paslay 12:28 No, I don't sshare with them now see how they're fine. They (laughs). I share with my wife. Now I share with my wife so she knows where I'm at when I'm on the road, you know, early in the morning, she can check and see if my blood sugar levels cruising. And I share with my band so my tour manager watches my blood sugar level on the road while I'm on stage. And that's insane. It's amazing. He’ll let me know over our in ear monitors were note the crowd doesn't even know what's happening. He'll be like, Hey, you got an arrow down. Orange juice, you know, I'll go over and drink out of Dixie cup. The crowd thinks I'm just partying along and I'm, I am I'm making sure the party keeps going and get some sugar in me. And it really is amazing. It's like a magic trick and I think back to 20 some odd years of finger pricks and and thinking how much picture I really didn't know like really what was the patterns of my blood sugar level and getting to see that on a graph now, but with the CGM it’s is truly amazing and, and I think, hopefully, you know, adding more years to my life with with taking even better control of my blood sugar levels. Stacey Simms 13:36 Let's talk a little more of the podcast because one of the really nice things about yours is you're able to get out of the studio, you know, if you haven't listened to half the show, he he kind of meets with the people he's talking to or hangs out with the family for a while and then the second half, they're in the studio. So it's a really nice mix. And I'm just I'm always curious from a technical standpoint, how are you doing the stuff on the road? I'm gonna get technical here. Are you wearing a mic? Do you have a crew How's it all work? (commercial break) Right back to Eric in just a moment I'll answer that question. But first diabetes Connections is brought to you by one touch handwriting your blood glucose levels is the ultimate throwback, the one touch Vario flex meter seamlessly syncs with the free onetouch reveal mobile app to create your dynamic electronic log book. And when you choose the onetouch reveal mobile app, you'll be joining thousands of other people living with diabetes. In fact, as of this past October, one touch revealed was the number one downloaded diabetes management app in the US, Canada, France and the UK to upgrade today to the one touch Vario flex meter and onetouch reveal mobile app, visit diabetes dash connections.com and click on the one touch logo. Now back to Eric talking about production of his podcast. Eric Paslay 14:52 Yeah, there’s a crew, they go out, hang out with the families that we're talking with and just kind of get the sounds of their life where they're at their family. He's running around. I think a lot of times when you're in the studio you can talk about it but you don't really hear the sounds of real life happening sometimes and it shouldn't really is just a just a sweet moment where we get to go and hang out at people's houses or where they're living and hear everyday sounds of being there. I think it helps people who’ve just been diagnosed or that had been diagnosed for many years to realize you're not alone. And there's a lot of people going through type one diabetes and there's a lot of spouses and kids and family members who have one people they love with Type One Diabetes and just how do you live with that every day. And and it really is, I think it's a really cool thing that we get to do is go hang out with the families for the we saw on the national need to hang out with Blackbird Studios here in Nashville where tons of bands record every year so it's fun for them to come see that and I get to tell him some stories of hair cut my album in here and that is fun. It really is one thing on the podcast I always try to make sure is like you Not just dealing with diabetic, you're a human being like, you're not just to do that back your mother, your father, your brother, your sister, your professional, your student. And I that was one thing I always try to make sure people remember that they don't just wear I'm a diabetic t shirt everywhere they go. It's like no, you said one ingredient of your life, not your whole life, even though it definitely is a big part of how your engine runs. But just making sure people don't just categorize themselves only as diabetic. Stacey Simms 16:30 Yeah, that's what I say to a lot of parents Remember, you're raising a child, not a number. You know, worry less about that straight line and more about is your kids happy. Eric Paslay 16:37 Raising child not a number. I love that. Stacey Simms 16:40 And this is really a dumb question for people who are not in podcasting or in broadcasting. But I'm always curious, is there different mic technique? You know, when you're talking into the microphone and interviewing these people, and then you're singing or playing instruments, you know, are there different things that you need to do in the studio? Eric Paslay 16:57 I don't, you know, talking to the mic, and I mean, Singing a lot of times, you know you do the vocal set maybe I'll try the vocal fade while the next podcast be like it's so far away from you. When your blood sugar levels everybody wants to be how do you level with it? I mean, it's just like we were just talking with this podcast right now and it's amazing just the technology we have from, from lapel mics where you can hide a mic on you to just a big old studio mic that you've used in radio for years. It's, there's so many cool ways to do it. It truly is amazing, just, I mean, and there's so many podcasts out now from anything and it's just so easy to really record a podcast these days with a computer and a home studio and, and all that and it's, we always joke in the music business. The coolest thing about a home studio is you have a home studio. The worst thing about studios, you can have a home studio. Is it good for music? Is it bad for music? I don't know. You know, there's a lot of music, but it's it really is amazing To do this right now people getting to hear to their little speakers wherever they're flying in the sky or driving the car, on their smartphone to watch them the device being when you're when you're hopefully cruising on a good good level. Stacey Simms 18:15 So you know you mentioned making music of course we haven't talked about that at all. Are you still having fun? What's you know anything new? Eric Paslay 18:24 Heck yeah. earlier today I've been talking about going on tour and Europe here soon and get back for a few days in Nashville and then Australia for a week. And just traveling around we've got a live album from live in Glasgow that's coming out we recorded it last summer in Glasgow, Scotland and have all the hits I've written for myself other people so we'll have the five number one songs on there and it's great and excited for that to come out and people get to hear the whole band and hear us live. Fun show have a great crowd and Glasgow Scotland and and then I've got an album that we just pretty much are mixing and kind of putting the final touches on that'll be out probably early next year. So got a live album in a studio album that are coming out and I'm excited to go tour and and play these songs and, and people get to hear how great the band is when we come to your town here. But a lot of really, really exciting things happening. Stacey Simms 19:21 Keeping busy man, thank you so much for joining me. I really appreciate you spending some time Welcome to the world of podcasting. I'm so glad you did it. Eric Paslay 19:29 Thank you, I think yeah, I think the more of us talking about taking care of that it is the more people will be unafraid of asking a question of Hey, I'm having trouble with high blood sugar levels at night or when I eat this. I it doesn't work. You know, I think the more we talk about that, the and more unafraid kids will be to raise their hand and class when they need to go see the nurse. I really was I was always afraid to like disrupt class, something when I'm sitting there and I can feel my blood sugar level crashing. Hopefully a little just people talking about it will help people not be afraid to get up from the meeting and go get take care of their blood sugar level so they can keep rockin and and have a good time doing it. /episode/index/show/diabetesconnections/id/12164675