Ask the D-Moms: A Dad's Worry, First Jobs, Teen Travel
Release Date: 04/06/2021
Diabetes Connections with Stacey Simms Type 1 Diabetes
New information about kids with type 1 and COVID, a possible link between pollution and type 2, a look at Dexcom's latest earnings call and a lot more. We're trying something new for the next few weeks! Join Stacey live every Wednesday on Facebook for the top diabetes news and headlines or listen back via the podcast or on other social outlets. Full transcription and links/sources below. Watch the replay on our or ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Podcast intro: Hi...info_outline "The Whole Thing Seems Like a Blur" - Having a Child Diagnosed with T1D During COVID
Diabetes Connections with Stacey Simms Type 1 Diabetes
It's hard to imagine having a child diagnosed with type 1 diabetes during the COVID pandemic. Most of us rely on community support and in-person meet ups and events to help support and guide us during that first year. But when you're diagnosed during a time of isolation and social distancing, what do you do? Andrew & Emily Hollis join Stacey this week to share their story. Their toddler, Addison, was diagnosed a year ago, a time when only one parent could enter the hospital with her, due to COVID restrictions. The Hollis family connected with others online and even created a line of 3D...info_outline "You can take it to another level" - Sugar Surfing with Dr. Stephen Ponder (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
Dr. Stephen Ponder coined the term "Sugar Surfing" in 2013 to describe a real-time, dynamic system of managing diabetes. In this "Classic" episode we take a deep dive into what Sugar Surfing is all about and get Dr. Ponder's perspective on everything from parenting teens with diabetes to how he feels after 50+ years of living with T1D himself. Dr. Ponder is the medical director at Texas Lions Diabetes camp where he’s volunteered for almost 40 years and in 2018 he was named Diabetes Educator of the Year It’s hard to believe now with CGMs and closed loop systems, but the thinking you’ll...info_outline Ben West: Using Diabetes Tech to Relieve the "Onus to Bolus"
Diabetes Connections with Stacey Simms Type 1 Diabetes
Ben West was a key organizer and architect of Nightscout and OpenAPS software. Even after all of the DIY and commercial development of the last ten years, he says we've barely scratched the surface of removing the mental and physical burdens from people with diabetes. Among those burdens, he says, is what he calls the onus to bolus - the responsibilities of diabetes that even the most advanced current software can't totally relieve. Ben is now the CEO at Medical Data Networks which has launched its first venture: ----- available to Diabetes Connections listeners! ----- Get the App and...info_outline "It wasn't something I was going to wait for" - John Costik Frees the Dexcom Data (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
Eight years ago, you could use a CGM but you couldn't share the data. Dexcom transmitters didn't connect to phones and parents and caregivers couldn't Follow anyone. That started to change - and change quickly - in 2013. That's when John Costik posted a photo on Twitter. That photo showed John's laptop, at home, monitoring his son Evan's blood sugar while Evan was miles away, at daycare. John soon linked up with others who were also working on improving existing diabetes tech. That was the start of Nightscout and a host of other "We are not waiting" improvements, many of which are now...info_outline "If You Can Dream It, You Can Do It" - Don Muchow Ran From Disneyland to Disney World with T1D
Diabetes Connections with Stacey Simms Type 1 Diabetes
This month, Don Muchow became the first person to run from Disneyland in California all the way to Disney World in Florida. It's a pretty amazing story when you consider that when Don was diagnosed with type 1 back in 1972 they told him that exercise was too dangerous. He wasn't even allowed to take part in his school's gym class! Don shares how he made the turn to ultramarathons and beyond and what led him to make this incredible coast to coast journey. He had to contend with COVID delays along the way and got a terrific surprise when he arrived in Orlando. Plus.. what's next? He's already...info_outline The Magic of Disney, with Type 1 Diabetes (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
A Disney vacation can seem overwhelming, even without diabetes. Add T1D to the mix and going to Disney World or Disneyland seems like it may not be worth the stress. This Classic Episode has great tips and advice to have fun without slowing down (much) at the Disney Parks. Stacey is joined by she has three generations of type 1 in her family. We talk about dos and don't for getting a disability pass (and how to decide if you need one), making do without carb counts and managing everything from hydration to ALL the walking at the parks. This episode first aired in December of 2015. ----- ...info_outline Going to "Regular" Sleepaway Camp with Type 1 Diabetes
Diabetes Connections with Stacey Simms Type 1 Diabetes
Let's talk about summer camp! Specifically non-diabetes sleepaway camp. We have a great roundtable to tackle a subject that can seem pretty scary but Stacey thinks is one of the best things she's ever done for her son. Joining Stacey are Shelby Hughes who live with type 1 and has sent her daughter with T1D to diabetes camp and regular camp, and April Blackwell, an adult with type 1. April went to Space Camp as a kid - no surprise if you remember our previous episode with her. April works in Mission Control at NASA. This podcast is not intended as medical advice. If you have those kinds...info_outline "Just go!" - Jeremy Larsen Travels the World with Type 1 Diabetes (Classic Episode)
Diabetes Connections with Stacey Simms Type 1 Diabetes
We can't wait to travel again! Looking back on this episode really makes you want to hit the road. Jeremy Larsen is an American currently living in Japan but he's traveled the world. Jeremy started the 70-130 project (the “perfect” blood sugar range) to show that type 1 diabetes shouldn’t hold anyone back from travel. In 2017 he came back to the states to do a national parks trip and now he . This interview with Jeremy took place in October 2015. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- ...info_outline Ask the D-Moms: A Dad's Worry, First Jobs, Teen Travel
Diabetes Connections with Stacey Simms Type 1 Diabetes
Moira McCarthy and Stacey are back to answer your D-parenting questions! This time around, they're talking about a dad who’s a first responder and sees the emergency side of diabetes, advice for young adults with T1D getting their first jobs and questions about teens with diabetes traveling abroad. In our Innovations segment – a new glucagon and previous guest Bob Weisher launches his Invincible Kids app for teens. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections...info_outline
Moira McCarthy and Stacey are back to answer your D-parenting questions! This time around, they're talking about a dad who’s a first responder and sees the emergency side of diabetes, advice for young adults with T1D getting their first jobs and questions about teens with diabetes traveling abroad.
In our Innovations segment – a new glucagon and previous guest Bob Weisher launches his Invincible Kids app for teens.
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!
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Stacey Simms 0:00
Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom, keeping you in control with an integrated system for diabetes management.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28
This week, ask the D moms is back! Moira McCarthy joins me to answer your questions, including one about sending a teenwith type one on an international trip for a month
Moira McCarthy 0:41
You can’t go from constantly overseeing it for years and years and years to bang letting them go on something like this. And that's why you've got to kind of poke at it. And it's not as much for them as it is for us for parents because we have to get past our own eggs. And that's how you do it.
Stacey Simms 1:00
We also talk about a dad who's a first responder and sees the emergency side of diabetes advice for young adults getting their first jobs, and Moira shares a story that stopped her in her tracks, even after 24 years of her daughter's diabetes.
In our innovation segment, a new glucagon option and former guest invincible kids takes a big step forward. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with type one more than 14 years ago as a toddler. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast.
If you are a careful, longtime listener, you have probably guessed that the teenager I was talking about in that tease there. The intro I do for every show is Benny. Yeah, my son is set to go to Israel for a month this summer. It's part of a camp program. I've been sending him to this camp since he was eight years old at age nine. He started going for a month. It's not a diabetes camp. But I took advantage of having more on the show to ask her for some advice. Because even though I let him go, you know, I am nervous about this whole thing. COVID aside, you know, this is a very, very big deal for me. He's super excited, and we'll talk about that in just a minute. With Moira
A big thank you to JDRF Desert West. That's the chapter that now includes Nevada, Arizona and New Mexico I believe they had me out for a they had me on zoom. It's so easy to say they had me come by. I hope we get back to that soon. But I did this via zoom, we had a great time. They have an ongoing event called type one talk. And they're bringing in authors, they have an author come in talk about the book read a little bit answer questions. It was a great fun time. I have to admit it was a little difficult to stay up because I know I’m such a baby. But it was on pacific time and I’m on the east coast. And I mean, I'm awake. We did it at I believe it started at 830 my time, and we went on with 10 o'clock. But I mean I'm not in bed, but I'm definitely in pajamas. Usually by which made it even more fun because I think maybe I was a bit looser. You know, just it was more casual in a way then during office hours. But I really enjoyed that.
And I got to say, you know, the world's worst diabetes mom had an amazing February and March. You know, the book came out in at the end of 2019. But thank you so much. If you are spreading the word or you've told friends about it, something happened this year, and it has sold more than definitely than I expected this year, but it's outselling some months right around lunch. So I'm very excited and I am working on the idea for Book Two. I'll keep you posted on that. But I'm always happy to talk to JDRF chapters, other groups, a mom group, you know, just to sit and chat. Just let me know.
Moira and D mom advice coming up in just a moment. But first Diabetes Connections is brought to you by Dario health. One of the things that makes diabetes management difficult for us that really annoys me and Benny, isn’t actually the big picture stuff. It's all the little tasks adding up. I mean, are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers no more wondering about how you're doing with your blood sugar levels. Find out more go to my dario.com forward slash diabetes dash connections.
My guest this week is my good friend and fellow D mom Moira McCarthy. She is an author, a writer and advocate and so much more. Her daughter Lauren was diagnosed at age six in 1997. And I started the Ask the D mom segment A couple of years ago here on the show. We love getting questions from you Moira and I, as you probably know, are very much aligned to philosophically when it comes to diabetes, which kind of makes sense because I learned an awful lot from her. She's one of my mentors, and I'm so thankful that I had her blog. Despite diabetes and her books to guide me early on in Benny's journey. I mean, even before I met more, I've told this story many times before I was a big fan. And when I finally got to meet her in 2015, we spoke on the same bill at JDRF. St. Louis, I was so excited, I was kind of intimidated to be speaking on the same bill as she was. And that's really how our friendship our in person real friendship started. I bring that up. Because while we're aligned, as I say, we also had our kids diagnosed at very different times in diabetes, tech availability, or even what insulins were available at the time. So you know, 1997, when Lauren was diagnosed, was really different from almost a decade later, 2006 when Betty was diagnosed, I mean, can you think that a kid diagnosed today when they leave the hospital quite often with an insulin pump and a Dexcom? Very different times. So I like that more. And I kind of overlap in that way and have a bit of a different perspective, just in our experiences, but some really good questions this time around. And as I said, I threw one in as well.
Moira, welcome back. It's always great to talk to you. I feel like we do this seasonally. Did we talk last year during allergy season?
Moira McCarthy 6:19
It's funny, because when's the last time that we did a chat like this to share with everyone? It's been? It's been a hot minute, or Oh, it's
Stacey Simms 6:27
been since last fall? Probably before maybe right around Halloween? Yeah, I
Moira McCarthy 6:31
can't decide if time is passing really slowly or in the blink of an eye. I just don't even know anymore. But I feel like
Stacey Simms 6:39
yeah, this this year is flying by and it's spring, is it really spring by you? It's usually.
Moira McCarthy 6:44
It's horrible. But it's spring on the calendar. But that's okay.
Stacey Simms 6:49
Well, we had a bunch of really interesting questions this time around. And I thought of you I was in a JDRF discussion. This is a really neat event I did with the the chapter in Las Vegas and surrounding states. So it was a couple of days after I've been there a few times. So I hope to go in person one of these days. But it was like a book club discussion, which was really fun. So I read part of my book. And then we had a whole group discussion. And I got a really interesting question from one of the moms who was there, and I wanted to run it by you.
This mom says she's pretty laid back, their son has type one, I want to say he is seven, but he might be a little bit older might be a tween, but the mom says she's pretty laid back really wants her kid to thrive with type one. But the father, her husband is a firefighter. He's a first responder, and he sees in his words, the worst of T1D. So he is very nervous that their son will have, you know, an unhealthy a bad outcome and all these words that he was using, and wants much more strict control, and really wants to get this message across to their son that you know, you've got to take care of yourself, where's the mom just really want to expose their son to the kinds of things that this firefighter is seeing? If all of that makes sense. What do you think about that?
Moira McCarthy 8:10
Well, so first of all, what they expose them to would very much depend on his age, and seven and a tween are very different. Right? So we'll just speak more generally, around it. Do our children need to understand the basics of type 1 diabetes, and why they do what they do? Absolutely. Why would you even a toddler, you, you must have done it with Benny that when you're giving them the shot, you say, you know, we're giving you this medicine so that now you can eat your food and it won't make you sick and things like that. And then as they get older, so you want them to understand it. But do you want to educate them in a fear factor kind of way? And to that? I would say no. Now, why is that? Well, that's because a number of reasons. First of all, children have very creative imaginations, and you can plant some really scary ideas in their head at a young age that may take forever for them to get out of their heads. Second, this gentleman, and thank you for his service, right sees the worst because that's his job to see the worst. If his job was to go visit everyone with diabetes every day, he probably wouldn't feel the way he felt. Does that make sense? Yeah. And so he's seeing these very rare, very frightening situations. So what I would say is, if there's any way that the mom and the dad can attend something together, whether it's virtual, or in person where they talk about the holistic approach to raising a child with diabetes, and we can you and I can talk about that a little bit right now for this mom and this dad. But as I've said to you many times, and as we all say to one another, we're not just raising controlled Diabetes, we're raising a full human being. And it's very important that a child grow up, secure, happy feeling cared for, not afraid of what may be around the corner, while at the same time having a basic understanding of why they might need to do what they would do. So if this child is seven, I would say there's absolutely no reason under any circumstance to talk about what that Father has seen, ever add to a seven year old. If this child is a tween 1112, I don't think it's the worst idea to maybe tell a story every once in a while. But I would also be careful of that. Because, again, you don't know if that person you're treating actually takes really good care of their diabetes, and is just in a bad situation you don't know, as an EMT, or a paramedic, paramedic, if there's an underlying illness that they may not know about, and they'll find out at the hospital or something. So, so even though you're there, you don't know the whole history. And I would just be careful around that. One of the things I will say is, I really do know, 1000s of families with someone who has type 1 diabetes in their family, and maybe five have had to call a paramedic, who I know, it's not out of the realm of possibility, but it's also not a probability. It's not it's way closer to never happening than it is to happening. And so based on that, I question whether you should build fear in a child to hope that they will take care of their diabetes. The other thing too is I know from raising my daughter, fear does not work in children. It's the same with everything, not just diabetes, they don't see down the road, they don't see danger, that part of them hasn't developed yet. I would say focus more on how he feels when he plays soccer, or he plays the tuba or whatever it is he does or he plays chess, or he reads, how does he feel them? That's what I would focus on. It's got to be so hard for that dad, though, with what he's seen.
Stacey Simms 12:08
Oh, yeah, yeah. Well, the way I answered it was, there's two parts to my answer. And the second part, I credited to you, I promise, because it's pure Moira. But the first thing I said was, we have to kind of understand that there are these issues of access, education, family support. And when, you know, from my experience with this podcast, my audience, the people who as you're listening, now, you are a very different and wonderful and kind of lucky bunch of people, because you are seeking out diabetes education, you now know where to get community support, if you don't have family support. And I do surveys of my audience all the time where these people have plenty of support, you know, they have a, they have community, they have friends, they have family, they have somebody to help them out. And I say all that because my guess and it's a guess. And this is not a value, state judgment, anything on people who call paramedics, we all need them when we need them. But my guess would be that the repeat people that this firefighter is seeing if that's indeed the case, are probably people who do not have the support and the setup that his son have. So it's not a fair comparison, in my opinion, of what his son may experience. And again, we have no idea what he's really seeing, right is a type two is a type one, does it really matter? Right Is this a Is this a father who may also see his son weaving without diabetes in every child that he takes care of?
Moira McCarthy 13:38
I was thinking that like I see a car accident, it must just be horrible. I mean, that have diabetes diagnosis is very traumatic to the parent. And it took me a long time to be comfortable is a weird word, but to be comfortable with it, you know, and if it's right in your face, like that, the poor man, but I would also say that you can go out and find the worst case scenario anytime with anything, and then dwell on that. Again, if it's put in your face every day, like this poor gentleman and his job, it's harder to look past, but he's gonna have to find a way to differentiate his child's diabetes from what he does on the road every day. And I just hope that he can, because I can't imagine how difficult it is to see that and then think about your own child.
Stacey Simms 14:29
And the second part of what I told this mom to try, as, and this is one of the things you've pulled out of your bag is write down what he is concerned about. And she should do the same. Anything she's concerned about about her husband overreacting and what it might do to their son, and he should write down. I'm not overreacting, this is what I see. And then bring it to the endocrinologist or use the patient portal just to talk to the endocrinologist without your child around especially a seven year old and see what the endo has to say. How many kids in your practice have called an ambulance three times in the last month? Or, you know, whatever he's really worried about? Or if this happens, does it mean that because we've talked about this, most of us kind of make up stuff? Because we don't know. And we haven't, we're afraid to ask.
Moira McCarthy 15:15
That's great advice.
Stacey Simms 15:17
Well, sure you gave it to me.
Moira McCarthy 15:20
But really, that is what I always did is just sort of went to the endo and said, This is what I'm worried about now. And then they would tell me why I didn't need to be worried. You have to trust your medical team to do that. And this, dad's probably going to have to think a little more than most of us have to because of what he's seen, you know, and then I know adults with type one who, when they're super low, prefer to call EMTs and have them come to their house and treat them and then leave without going to the hospital. I don't get it. But I know people who say they'd much rather do that than use glucagon,
Stacey Simms 15:53
but I'll try to follow up with them. I you know, I'm in touch with the chapter. So we'll kind of circle around and see if we can find out what happened there. But it is it that's a that was a unique one. When I saw that, I thought oh my goodness. You know, I definitely wanted to ask about it. We got another question. Heather says my son just started his first job. Congratulations. Should I have him give the employer a quick reference emergency form? Or is that not necessary?
Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.
Now back to my conversation with Moira. The question is from a parent asking whether her child needs an emergency diabetes form at work. And this is a young adult, this isn't you know, a 14 year old kid that she's driving to,
Moira McCarthy 17:22
you'd say of course, my son just got a job. So he's only 16. But I consider 16 old enough. So I can think that if you are old enough to have a job, even if it's babysitting for people, you are old enough to make that decision yourself and speak for yourself. I think parents should advise their children about what they think might be a good idea. But at the end of the day, that's up to the kid in the work situation. What my daughter would do is just kind of nonchalantly when she started, she worked at a country club catering and in the pro shop. And then she was a bank teller. And what she did is after she started just like you had meters then now I guess it'd be your CGM just pull it out and say, Oh, you know, you guys just so you know, I've type 1 diabetes. If you see me doing this, don't worry about it. If I need anything, I'll let you know. That's it.
Stacey Simms 18:12
That's funny, because that's what happened to Benny. He just got a job as a grocery store clerk, he's stocked shelves, is that what it's called? He stock shelves. You know, it didn't make a big deal about diabetes. I don't think he even told them before he started. And then when he was going a little bit on the low side, and he took out his pump where his CGM numbers are and said, Hey, I'm going low. I've type one, I just need to sit down for a minute, you know, I'll keep you posted. I'll let you know if I need anything. And it was he said it was really easy. And of course, I was thinking to myself, the worst amount that I am like, it didn't even occur to me to, like, fill out a form or let them know. I mean, he does take care of it. And I'm lucky that way. But I'm curious and I don't I'm not as familiar with the ins and outs. I want to say legally, but with adults starting these jobs, full time, things like that. Are there ways that they should be disclosing or anything they should be saying or do you think it really is just up to their comfort level? I guess I'm just thinking about, you know, American Diabetes Association guidelines, that kind of stuff.
Moira McCarthy 19:13
Yeah, it depends on the job. If you have a job that you're only allowed to like they give you a policy that says you may only eat and drink food during your break and your break is 15 minutes at the same time every day then you need to have a discussion with your boss and say Just so you know, I'm gonna have a tube of glucose tabs in my pocket and and I may look at my CGM and pop one in my mouth but that this is why and, and the rest of it. I think Maren always felt that like if she was at work and she felt like she was gonna throw up she wouldn't have had a form filed in case she's ever sick. So she just sort of treated it that way. Now as an adult working now, Lauren just goes about her day. You know, the people she works with all know she has diabetes because they work with her, you know, and it just Sort of this job now it actually was part of the interview process because she works in prescription drug pricing, you know, so they know but for a teenager, my opinion, I let Lauren make her choice and how she did it. And that's how she did it. I do think that the people you work for and you work with do need to know you have type 1 diabetes, they don't need to know what your basil is, or you know how to give glucagon or anything like that, but they need to know, right? Just for some weird reason, you know, for whatever they need to know. But I don't think you need to go deep into it. Unless it's a very unusual job that has really restricted than I know, like, for instance, cashiers in the front of supermarkets By the way, Benny's not a shelf, stocker. He is a manager of product traffic.
Unknown Speaker 20:48
Moira McCarthy 20:51
I'll let him know resume. But if you're a front cashier, in other words, that's one that you may have to say to your boss, hey, listen, I just need to keep a juice box here and something here. And if I feel low, I'll just eat if I need to stop, I'll, you know, I'll buzz you. And let's just let the other staff know. So they don't think I'm getting some special treatment or something like that.
Stacey Simms 21:11
Yeah, that makes a lot of sense. And I'll link up any kind of advice, legal stuff for people who really do, as you said, you have a job where they can't leave their post, that sort of thing. I assume people like that would probably know what to do at this point. But I'll link that up anyway, just for some good info there. And I'll tell Benny, that it sounds like he got a promotion, he can tell me more about bananas. And it,
Moira McCarthy 21:34
you know how much things are stocked. And when they're stuck.
Stacey Simms 21:37
It's been really fun. And the timing has been really good. Just as a quick aside, he really just started and we let him because of the vaccines coming out, frankly. So yeah, when he got the job, we knew there was going to be a training period, and he wasn't gonna be in the store right away in North Carolina, it just worked out so wonderfully, that they opened up to grocery store workers. So as soon as he got the job, he was able to get the vaccine. And you know, even though he's not on the store floor all the time, I am certainly much more comfortable. He is now had both, and
Moira McCarthy 22:08
I would want that even my kid didn't have diabetes, just because yeah, goes to the supermarket. You know,
Stacey Simms 22:13
yeah, I'm thrilled. And he's so happy. It's a it's a nice thing. You know, when your kid gets really their first job,
Moira McCarthy 22:19
it's good for them to practice to how to be able to just sort of deal with diabetes on the run while they're working. Do you know what I mean? Like, I never had a problem with Warren thinking, gee, I feel low and popping a glucose tab into our mouth or taking a bite of something and not being like I have to stop everything. Because I feel low. Some people do have to, and they'd have to deal with it differently. But for her, she knew she was going to land in a high pressure job where she's running around all the time. And certainly she has. So now she's glad that she most of the time can just go with the flow with it.
Stacey Simms 22:54
You just got to make sure you just eat a lot of bananas and let them know if he's low.
Unknown Speaker 22:59
Just tell him to the whole banana don't take bites.
Stacey Simms 23:05
Okay, so I actually have a question for you. All right. This is because as we're focusing here on Benny some more this summer, COVID permitting, he is planning to go with his summer camp. This is the camp where he's gone every summer since he was eight years old for a month. And at this age, they go for a month to Israel. So awesome.
Unknown Speaker 23:27
I know. I'm so excited for him. I'm crossing my fingers for Benny. Right. Oh,
Stacey Simms 23:32
so again, COVID permitting, we have been talking to the group, this is not their first child was type 1 diabetes, who will be going he's pretty easy going. But we are going back and forth on what would I like? What would they like my biggest concerns that we are addressing? And I don't know the answer to really is just about how much does he need to take with him every day? I don't because they're on the move the entire time. I don't know if there's like a home base where they'll have all the stuff or if he needs to take everything every day. But that's neither here nor there. My question is for something like that, you know, knowing that everybody does things differently. But would you have any kind of non negotiables for a teenager traveling with a group abroad or somewhere far away for a whole month?
Moira McCarthy 24:19
So when Lauren only went for two weeks when she was a cig go to Israeli that she went to Washington DC, which is the first time she went really far away for two weeks, and there was no nurse or anything. We talked to the endocrinology team, and she came up with a plan that she felt she could be comfortable with. And the endocrinology team was okay with that. So I said that's fine. And part of her plan was I mean, there was no share them. But part of her plan was she did not have to report numbers to me through the day and it worked out fine. I mean, I don't know what her blood sugar's were when she was there, but I know she came home and had a great time. The thing that I could say let's go to the extreme and then go backwards from that. So let us you're not negotiable, as you have to see as numbers on your phone all the time. We've talked about this before, you don't know what he's doing, you don't know what the temperature is, you don't know what he ate for breakfast that day, it's only going to get in the way of the experience, if you want to manage it. And I know you don't. But if you wanted to manage his diabetes remotely from America while he was there, it would be crazy for both of you. And he doesn't need that. So I would say that pick a time every day, that would work for him, that isn't too awful for you, your time but if there's a time, that sort of works, maybe he could check in at that time every day. And if they're in the middle of something, you can just have a phrase that he sends you to say, super busy. Everything's great. Love you. Sure I can talk tomorrow, you know what I mean? Or something like that? Because that would just make you feel that the thing about this that I think is super good is his camp friends are going with him, right? Absolutely. Yeah. He's in an environment where everybody already knows and supports everything he needs. So it's almost like you're taking the camp, that you work so hard to help him be comfortable with me he in the camp works so hard with and just moving it to Israel for a month. And that makes it kind of extra good. Right? Definitely everyone around him if he was going alone, and he hadn't met anyone, and it was all new. Maybe I'd have some other suggestions. But given that, and I think you can do it, Stacy, I think you can let them go. And you know what, this will be great practice for college.
Stacey Simms 26:39
Well, we I will be calling you every day, we actually have one non negotiable that we have always had for Canada. And that is, and it is not actually up to him. It's up to the people with him. And that is if he throws up more than once in 24 hours. I get a phone call.
Moira McCarthy 26:56
Oh, absolutely. I wasn't even thinking of sickness. Yes. Right. Right. That's I know you were thinking Oh, like with my kid without diabetes. Oh, good point. I
Stacey Simms 27:05
was always thinking that, you know, we're really fortunate. I'm going to knock wood or something that you know, Penny doesn't get ketones very easily. Now, I've just jinxed myself.
Moira McCarthy 27:13
All right, good lord.
Stacey Simms 27:15
I'll say a Kenahora, too. But I don't know why I said that. But but to illustrate the point that I've always felt that that's the biggest danger when I send him away. It's just camp is dehydration. People not recognizing high blood sugars, you know, having an issue like that. And I figured that's something to look out for. So that's my really my only non negotiable. The other thing that he is asked because I asked, you know, he made he made the plan more he made the plan for this that we're proposing
Unknown Speaker 27:43
Stacey Simms 27:45
is, he said, he's probably gonna forget stuff, if he's got a bag that he's got to be repacking every couple of days. So the call that you mentioned that daily check in, he wants it to just be a photo of his backpack.
Unknown Speaker 27:57
Oh, that's brilliant.
Stacey Simms 27:58
And just say, Hey, mom, my stuff is here and knowing that he has to text me about it every day. And I think we'll do it before he goes to bed because it is a seven hour difference. Yeah, he first proposed Why don't we do it at breakfast every day? And I'm like, because
Moira McCarthy 28:10
it will not be breakfast time here. That's right. You know, what you might want to think about is how and you can do this now? How can he scaled back what he needs to carry every day when they go up? What can stay in his suitcase? Like if you could get a pen with some rapid acting insulin? Yeah. Then if his pump site goes bad, even if he's gone for the whole day, he doesn't need a site change and stuff like that, unless he really wants
Unknown Speaker 28:38
No, no, that's a good point. I think he'd be into that.
Moira McCarthy 28:40
Yeah, like, minimize what he needs to carry during the day, and then keep the other things there. And they may also if they're staying in the same vehicle, that's bringing them around to places you may be able to have him tuck a little bag into like the trunk of the bus or whatever, like ask the bus driver, can you just put this somewhere and have like, a couple sites in it or something?
Unknown Speaker 29:06
Give us a gift?
Unknown Speaker 29:06
They use the same? Yeah, yeah, we'll
Stacey Simms 29:08
find out. All right, I'll work back I like that I
Moira McCarthy 29:11
left. Those are both reasonable. Both reason things, you know, and that's super cool that he's thinking ahead about and understands what he might, you know, who doesn't forget things, I pull out the driver three times and pull back and now my sunglasses Oh, my wallet.
Stacey Simms 29:26
I had to come back into my house. I was running a quick errand. And I had forgotten one of the errand had a package in the house to send back so it happens all the time.
Moira McCarthy 29:34
So I think something for people who are listening to think about if you have a young child, and you're thinking, Oh, I'll never be able to do that. This is why as they're growing, it's really good practice to give them age appropriate freedom, whether it's play in the backyard on the swing set while you're not out there, you know, or ride their bike around the block with their friend at the appropriate age. I'm saying And as you let these things happen, you work your way up to sending your kids is,
Unknown Speaker 30:07
you know what I'm saying?
Moira McCarthy 30:10
Go from constantly overseeing it for years and years and years to bang, letting them go on something like this. And that's why you've got to kind of poke at it. And it's not as much for them as it is for us parents, because we have to get past our own Nxd. And that's how you do it. So you've done that. And now, Ben is going to reap the rewards of your being willing to put aside your fear for him so many times over all these years. Yeah, you. Well, thank
Stacey Simms 30:37
you more. And I'm glad you said it that way. Because one of the interesting statements that people make to me, and I know you get it, too, as well. Wow, I could never do that. Because I would worry, as though I'm not right. All kidding aside, the first couple years, I sent him to this camp, I would wake up at four o'clock in the morning, the first week or two that he was there. And I would wake up thinking that's it. He this was the stupidest thing I ever did. This is terrible. What was I thinking? And he's fine. Right. And so it was, it's our fear. And it's, it's still there. You've heard me kind of groaning over here about going and making all these noises. I am nervous, but I know I have to let him go. So it's it is about it really is about facing those fears. And little by little, I will never forget the first time I let him go play in the snow.
Moira McCarthy 31:24
That was terrifying. Oh, God, everybody goes low in the snow. So the way I always say it, and I know some people think it's hokey, but I don't care. I'm a hockey person. So whatever is, in my opinion, the most loving thing a parent can do is to set aside their own fears on behalf of their child's success and happiness. Yeah, within reason. You know, if Ben, he wanted to try lighting a barn on fire, I'd be like, check your blood sugar first. Just kidding. But you know what I'm saying? Yes,
Stacey Simms 31:54
you got it, you just got to do it. And it's, it feels really hard. And it's scary. But when you start to get to the other side of it, it's wonderful, right? It's what it is wonderful it is. I know that sending him to this camp and diabetes camp was great and helped him in different ways. But sending him to this camp, I think has been the seminal experience of his childhood, it has given him a gift of independence, friends, confidence, troubleshooting, you know, crazy things have happened. And they don't necessarily call me because he manages it with the help of the people that are there.
Moira McCarthy 32:33
And think of how much easier it would have been for you to just say that you can't do that. I know your sister went but you can't because you have diabetes, and instead of him moving toward this independent, funny, awesome young adult who's gonna thrive in life, he'd be not doing the things he wants to do, because he never would have experience knowing that he can, right. Yeah, good for you.
Stacey Simms 33:00
Oh, I'm only I'm only quiet because I'm very superstitious. Moira, and I know it's silly. But I worry, we have to move on from saying nice things about Benny.
Moira McCarthy 33:10
I have a friend whose daughter went to South Africa on an exchange program and had type 1 diabetes. And when she was there very far away from her parents, she had to have her appendix out and it was fine. Everything was fine. Her parents didn't get on a plane and fly one of the adults who oversaw the thing stayed with her. The hospital knew type 1 diabetes, everything was fine. Wow.
Stacey Simms 33:34
Okay. All right. I'm gonna start wrapping us up here, Moira, but before I do, you posted something really interesting the other day and I want to ask you about it you spotted? Well, I'll let you tell the story. But you spotted an adult who looked like she needed help with a low blood sugar. So tell me about what happened.
Moira McCarthy 33:51
So it's really strange. I've been swimming a lot. And I go to deep water exercise class. And so in deep water, exercise class, you you're exercising, but you're kind of looking around. And this pool is huge at my club and way, way, way over the other side, in the shallow end, where they do physical therapy and little kids swimming lessons and stuff. Just on the corner, my eyes saw this woman and it was like, she looks kind of wildly funny, you know. And then I saw who I realized is the physical therapy instructor go over and kind of take her by the shoulders and bring her and sit her down on the step in the pool in the water. And I thought I don't know why she just had the book. I thought she's having a low blood sugar. And then I saw the club manager come in with a can of juice and she opened it up stick a straw on it and they were handing it to her and I thought oh, that's what it is. It's a low blood sugar. But as I watched the woman struggling with it, and clearly wishing that it wasn't happening, she wasn't showing that visibly and some of it I may have just been projecting, you know, but I watched it and and I didn't go over to offer help because I was so far away and I I had feeling that this woman just didn't want attention, but she needed attention. And what struck me as I watched it and thought about it was, I had, you know, it's been 24 years since Lauren was diagnosed, my family is raised millions of dollars and we're not wealthy people. I do the ride every year, I used to do the walks, you know, I speak at places, and sometimes you just feel like, Lauren seems like she's doing really well, maybe, maybe I should move on. And I don't ever really feel that way. But just sometimes you're tired, you know. And when I watched her, I thought, I have let myself forget that even though my daughter is down in Washington, DC with an incredible job, thriving career, thriving life, that's her reality. You know, it's easy for me to forget that because it's not my body. And it's not my mind, and it's not my diabetes. But it was a stark reminder to me that I will never regret raising my daughter to be tough about this and just live her life and not let it stop her from what she's doing. But I need to remember that raising her to do that doesn't mean that it's easy, right?
Unknown Speaker 36:16
Moira McCarthy 36:17
I feel renewed. I feel like I can't stop. I have to keep trying because it doesn't go away. And I guess the way that I said it a long time ago that I'm remembering right now is my daughter's fine, but this is not okay. And I think watching that poor woman, not wanting to be getting the attention not wanting to be low trying to get things going get when in my head. I'm like, No, you need protein. Diabetes mom, we found out in my in my exercise group, and she was to glaze over and I'm like,
Stacey Simms 36:55
well over that. Peanut Butter crackers in your bathing suit.
Moira McCarthy 36:59
I think that watching it was sort of a gift to me because it reminded me to respect the disease and to keep doing everything I can to make it better for all those people like that woman and like my daughter and like Benny and like everybody else, right? Yeah. Yeah.
Stacey Simms 37:17
I'm so glad you shared that. It's just you know, those reminders are so important along the way. As you know, as you said, Lauren is an adult she's not at home. It's wild to think about I still can't believe Benny's driving. 16 It's, I know we only got a couple more years before college.
Moira McCarthy 37:34
Yeah, Lauren's moving into her own apartment she's lived with her old college roommate said she got out of college. Oh, wow. Next week, she will be living completely alone for the first time in her life. And she's very excited about it. So it is
Stacey Simms 37:49
good for her. And I'm sure she'll have the the juice and the crackers with protein. You need a protein? Well, normally, this is where we would say Where are you going? Where are you speaking, but we're getting there. We're getting there. And later this year, perhaps but it's I think it's still fun. I know really sick of virtual, but I gotta say I love the connection. And I'm doing something really fun with my local chapter, which is now a couple of states my local jdrf chapter. And that is later on in April, and I'll be posting about this on social. They're doing like a spirit week. It's a very clever, fun idea that every day is a little different. And I am hosting a big trivia game at the end of it. And I'm very excited. It's all gonna be diabetes trivia, but nothing, you know, nothing stodgy or boring. And I'm really excited to do this and I hope I get to do it for more chapters.
Moira McCarthy 38:41
That's a great idea. That'll be a lot of fun today and I help tape the upcoming virtual gala for my chapter in new languages now the Greater New England chapter so I'll be speaking a little in that but mostly that night will be about martinis from home and fitting perfect titles and stuff like that. But um,
Stacey Simms 39:01
you have Martini earrings, or did I make that up?
Moira McCarthy 39:04
You make that up that I may have had them and I don't remember either. You know, me and my whimsical jewelry?
Stacey Simms 39:10
No, I know what it was when we did last summer we did Hollywood Squares for friends for life. And you had a martini but you
Moira McCarthy 39:18
had I was acting like Joe and morally but it was water just so you have a martini at 9am never
Unknown Speaker 39:30
never before 1030
Stacey Simms 39:31
see I'm just a I'm just a frustrated game show host one of these days maybe I'll get to do my dream career. I'll digital and runaway to do card sharks.
Moira McCarthy 39:42
Dr. Oz can do. I don't see why you can't move Don't get me started.
Stacey Simms 39:46
Well worth Thank you so much. It's always so much fun to to check in and I appreciate you answering one of my questions this time around.
Moira McCarthy 39:56
It's the first time I've ever answered a question for you right
Unknown Speaker 39:59
Moira McCarthy 40:00
It's good to talk to you again. Stacey. We'll do it again soon.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 40:14
As always, I will link up Moira’s blog and more information, how you can find her books and all of that good stuff. And I should mention here, you know, we talked about camp a lot and how great non diabetes camp can be for your kids. I am taping an episode. I hope to have it out next week, but if not, it'll be out the following week. I want to be quick on this because camp is coming up or at least you know, Camp registrations. If you if you're doing sleepaway camp, they may have already closed but I want to talk about camp. So I'm working on an episode or roundtable with parents who have sent their children like I did to non diabetes, sleepaway camp, and adults who went to non diabetes sleepaway camp as kids so we can get some best practices in and more of those non negotiables, like I mentioned in my chat with Moira. And that should be out. Like I said, I really hope next week, but if not the week after that, all right innovations coming up, we're going to talk about a new option for glucagon. And a new step forward for some folks that we've talked to previously here on the show.
But first Diabetes Connections is brought to you by Dexcom. Dexcom has a diabetes management software called Clarity. Do you use this for a very long time, I mean, longer than I'd like to admit, I thought it was something that just our endo could use. But you know, it's really helpful. And now I actually have it on my phone, you can use it on both the desktop or as an app, it's an easy way to keep track of the big picture. I find I use it when we're adjusting things, you know, which I felt was not stopped there for a while. But at age 16 Benny is kind of leveling out on growth and changing basil rates, at least for now. And Clarity really helps us see longer term trends. The overlay reports help context about his glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on and how they can better help. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us find out more go to Diabetes connections.com and click on the Dexcom logo.
In our innovations segment this week, the US FDA has approved a new glucagon option they have approved Zegalogue. I hope I'm saying that correctly, is an auto injector and a prefilled syringe. And it is pretty amazing that we went for so long, I mean pretty much until a year or two ago with one option. And now we have three. So Zegalogue joins Baqsimi the nasal glucagon and the Gvoke Hypopen which is a sponsor of this program, you heard me talking about them earlier. Zegalogue will be available in the US later this year in June for ages six and older diabetes mine has a terrific article as they always do on Zegalogue with all the information, although not a Pronunciation Guide couldn't find that anywhere. But apparently they had initially thought to launch this as brand name hypo pal, but they dropped the name I'm my guess is that it was too close to hypo pen, you know the Gvoke Hypopen from Xeris. And, you know, I wonder if I'm not only marketing, but there were other concerns about that.
This round of glucagon is also being used, interestingly, for the investigative clinical studies with beta bionics. That's the islet pump, the dual chambered insulin glucagon pump from Ed Damiano that we have talked about for a very long time here, but this is the brand of glucagon that they have been using. That is not to say that they couldn't use another one. So the next time we talk to the iLet folks, and I've been working on that we've been going back and forth on scheduling and the like, but we'll get it and I will definitely ask them about this. It's also worth noting that Zealand, the company behind this, if I haven't mentioned them yet, that Zealand and Xeris the hypo pen folks are both studying a mini dose version. This would be small doses of glucagon, where you're trending lower, you don't need the emergency. A lot of parents use this for stomach bugs. Maybe adults too. I'm more plugged into the parenting side of things. I know insulin camps have done this so many glucagon is a popular off label use. It's definitely not FDA approved. But these two companies are now already studying how they could launch a mini dose version probably a couple of years away. interesting to think about.
I want to bring you up to date on another story we've been following last August we talked about which year from invincible. This was a website an app to help caregivers to help schools to help nurses and teachers and I guess what you'd call non healthcare personnel. You know, the the front desk Secretary that's who was in charge of any diabetes for many times when there was no we had no full time school nurses elementary school, how to teach all these people how to better support their students. Bob was diagnosed with type one when he was 18 years old. He said he was totally unprepared to deal with everything and he built invincible, he says to make it easier for kids to grow up with type one. And he just launched a new app. And it is fourteens invincible helps teens living with type one, build independence and have fun doing it. I have not taken a look at this, I apologize, I will see if any will take a swing through it. But we put it in the Facebook group if you'd like to take a look. And I love what he's doing here. Teens are tough man. I'm interested to see what the reaction is on this. What he does have on his side is that he has taken into consideration feedback, input, all that stuff from actual real teams. And you can see some of that and some of their feedback on the website. So this is not just somebody kind of coming into the community and thinking they know what to do. This is someone from within the community who has a lot of experience that has taken a lot of time to ask the right questions, and to admit what they don't know. So I'm excited to see what happens with invincible and Bob, I wish you all the best.
Hey, next week, we are back to good news. I need your Tell me something good stuff, send it into Stacey at Diabetes connections.com. post it in the Facebook group or just DM me on social media. I'll be asking because I love to share your good news stories.
Stacey Simms 46:12
Before I let you go a couple of things to look forward to in the next couple of weeks. I mentioned the trivia I'm doing for the JDRF chapter here in Charlotte. I guess it's now the Carolinas chapter. And I'm really excited to do that. I am just a frustrated game show host as you know if you've listened to some of the silly episodes we've done over the years. I love this my college radio station group, which sounds a little weird, but we have been doing trivia once a month since I don't know since the pandemic started maybe since last March. That's a really tight knit group. We have a reunion every year. And it's just so much fun. I am so bad at that trivia because it's all like 90s music. It's it wasn't a news radio station. Although it did have news. It was a hot AC pop station, adult contemporary music for those of you not up on the radio lingo. And I was there in the late 80s, early 90s. But it's just really fun. Anyway, long story short, I'm doing a modeling my trivia over that good time I have with them every month and it's going to be a lot of fun. It's not going to be scientific diabetes questions. So if you can join me for that if you're in our local area. If you think that sounds fun, and you'd like me to come to your chapter or group, I will be more than happy to do this for you. And we'll have a lot of fun.
All right, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you for listening. I'll be back in just a couple of days with a classic episode, so I hope you can listen then. Until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged