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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.
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Now displaying: Category: family
Sep 3, 2020

It didn't take long after my son was diagnosed for someone to tell us, "Kid first, diabetes second." Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community.

I get it. We shouldn't take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make.

But the more I think about it, more I think that phrase misses the mark.

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!
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Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription:

Stacey Simms   0:00

This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available at Amazon as a paperback eBook and audiobook. Learn more at Diabetes connections.com

 

Announcer

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms   0:26

Welcome to a mini episode of the show. I'm your host, Stacey Simms, and I'm really glad that you joined me for this now these episodes I do occasionally are more. I'd call them more editorials. I do interview shows week by week if you're a longtime listener, you know that but this year I added in these mini episodes these minisodes just me, I am not a medical expert. This is more mom to mom advice. Just from my experience as a longtime parent of a child with type 1 diabetes, what I've learned and what I think can help. My son was diagnosed with type one when he was 23 months old.

 

Stacey Simms   1:00

that was back in 2006. He is now 15 and a sophomore in high school. Oh, my goodness, he is he's very comfortable with diabetes is very confident. He's very independent. And while we are far from perfect, we are doing a great job according to our endocrinologist, and that's all I really need to hear.

This subject has been on my mind for a while. So let's just get into it. I want to talk about the saying, kid first, diabetes. Second. It's been around our community for a very long time, probably longer than I've been a part of the community almost 14 years now. But I just don't think it works. It doesn't work for me. I don't think it works for anybody. So let's talk about it. What is kid first diabetes second all about? I think we know what it's supposed to be right? You hear this most often right after diagnosis. And it means that you know, your life shouldn't change that much.

 

Stacey Simms   2:00

From what it was before, or you know, you shouldn't take away all the fun things that make childhood childhood. And we don't want diabetes to be the first thing people think about when they consider our children. And we don't want diabetes to dictate every decision that we make. Now for some people, kid first diabetes second means letting them have a giant Sundae, or go to a pizza party. Now it doesn't have to be all about food. I did say it to myself years ago when I let my son go to regular sleepaway camp, not diabetes camp for two weeks when he was eight, and he has gone a month every year since then. So I've said that to myself, right kid first, diabetes, second, let's do this. But the more I think about it, the more I think it misses the mark. Kid first diabetes second, isn't right. It seeks to separate the diabetes from the kid, which is impossible to do. Or maybe it's not impossible, but it doesn't sit right with me.

 

Stacey Simms   3:00

Here's why implies that you're sort of cheating on diabetes. We're going to put diabetes aside, we're going to put it second. So we can do this other thing that every child should be able to do. Put the kid first, what we're saying is that kids with diabetes, shouldn't be able to do that shouldn't be allowed to do that. You're just letting this be a special case, because it's fun. And it's about being a kid. It's as though we're saying diabetes can't be part of a real childhood, a good fun, a wonderful childhood. take it one step further. And we're actually implying that diabetes can't be part of a good fun, wonderful child, or ultimately a person. It sounds dramatic. I know. But I really don't think it is. Looking at this a slightly different way. I talked about it just a bit in my book, the world's worst diabetes Mom, I use the analogy of the Hulk there. Alright, so when Benny was very young and ready

 

Stacey Simms   4:00

He was diagnosed just before he turned two. We couldn't explain to him exactly what was going on, you know, you know, when your blood sugar is high, you can be so grumpy, you can be unreasonable not that a three year old is always reasonable to begin with. But it was so hard to explain to him what was going on. And it wasn't until, I mean, really till about age four or five, that we were able to start working on a few strategies to help and one of the best involve the Hulk. We started telling Benny that he was a lot like the Hulk. I don't have to explain to the Hulk is right, the Marvel superhero, big green guy, comic book, TV show, movies, that whole thing. Okay, so we started telling Vinny that he was a lot like the Hulk when his blood sugar was high, and he felt angry and mean. But unlike the Hulk alter ego, Dr. Bruce Banner, we said he could learn to control the big green guy. So we started by having him recognize that he was high. This was before the days of Dexcom for us, so we would just test blood sugar, and then Benny would work on removing himself from the situation. He could go

 

Stacey Simms   5:00

It was room and beat up a stuffed animal. Or he could yell into a pillow. He could sit quietly with me, he could color he could drink water, he could be mad. But he couldn't release the Hulk on other people. It wasn't perfect, but it really helped him process what was going on in language that he could understand as a little kid. So fast forward to the Marvel Cinematic Universe. And this is, of course, the movies, the Avengers movies, and we're big comic book people. We have seen every MCU movie together by family, we all have our favorites. This was really as an aside us such a fun part of our, I don't wanna say our family history that sounds very high and mighty. But my children really were old enough to see these kind of movies just as they were coming out. And now they're older and they don't want to be with us as much and we were able to see all of them together. And it was fun in between arguing about the theories and talking about the characters and we saw the last I want to say four or five movies on preview night I would get tickets on the Thursday before they were released and we always will

 

Stacey Simms   6:00

A big deal about it. So it was great. And if you're familiar with the movies, or even if you're just familiar with the character that you know, the Hulk is always struggling, but the character is right. He has two distinct sides, Bruce Banner, and the big green guy, and they work in opposition. And that's kind of what we were telling Benny right this side can't understand that side. Or you know, when you're high. You're not you. You've got to get control over that part of you. Then we saw Avengers endgame. And I almost fell out of my chair when smart Hulk showed up. I What is he? I guess he's called Professor Hulk. But whatever he is called. Bottom line is that Dr. Banner has figured out a way to embrace his Hulk side, and the two are at peace. I looked this up. Yes, I did some research into Professor Hulk. Marvel says equal parts intellect and brute strength. The professor represents banners ideal version of self. And that's it. That's my hope for Benny. Now I have to stop for a second and say I can

 

Stacey Simms   7:00

Knowledge I am saying all of this as a person without diabetes, I'm the mom, I'm not the one living it. So I understand he has to find his own ideal point. This is exactly what I'm working toward. My son can't take diabetes and pretend it's somebody else. Yes, that worked when he was three or four. But in his young adult and adult life, he can't take his bad moods and its highs and lows and push them off on the other guy. I'm of course not saying highs and lows are not real. Obviously they are, they need to be acknowledged. And they in many cases need to be accommodated for by the people around the person with diabetes. But those highs and lows are part of diabetes, so they're part of him. And if Benny is able to embrace the side of him that he sometimes wants to reject, he will be that much stronger. And that brings us back to kid first diabetes. Second, it needs to change. It needs to change in our thinking to simply kid with diabetes. So what is that

 

Stacey Simms   8:00

That mean in practice, birthday cake? Yes, that is a life with diabetes, sleep over sure that's a kid with diabetes, soccer practice without me there. Same thing. I think if we treat these events and foods, like we're somehow cheating on diabetes, or somehow separate from it sends the wrong message. I mean, think about for us without diabetes. I am not eating birthday cake every day. But I sure I'm gonna have it the next party I get to go to knowing that. Do I then have to say, woman first birthday party attendee second? Or maybe mom first mom who really needs to eat more salad and fewer desserts second, I mean, you share that right? There's that guilt. Right mom, first mom who shouldn't be eating cake second. And it's not always about food. As I've mentioned, milestones and events are very relevant here too. So if you're saying kid first diabetes, second about, let's say a trip with the grandparents, you know the older sibling when

 

Stacey Simms   9:00

The grandparents did a special trip. And then a couple years later, the younger sibling with type one wants to go insure kid first diabetes. Second. Well, you're really telling your family that kids with diabetes shouldn't be able to do that. You're just allowing it, because it's fun. And it's about being a kid. It's just being a kid with diabetes. It's not easy to change our language about diabetes. I've been saying kid first, diabetes second for years. I looked it up. And it first shows up in my blog, in 2011. But words matter how we talk about diabetes matters. And our kids are listening, even when we think we're being careful. So I'm gonna stop saying kid first diabetes. Second. That is not how I actually parent and teach. It does not work for us. And it's not how I want Benny to think about his life with type one. So what do you think? Agree? Disagree? Remember, I am the world's worst diabetes mom.

I'd love to know what you think you can email me Stacey@Diabetes-connections.com, or find me on social media, I'm linking up everything in the episode homepage. The show notes for this will be at Diabetes connections.com. You can find all 320 episodes of Diabetes Connections there. We also have an extremely robust search. So you can search by keyword by topic by date, and find whatever topic you are looking for. But I'd love to get your reaction here, especially if you've listened this far, and you're an adult with type one. What do you think about all this? The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes is available on Amazon in paperback eBook and audio book. I hope you check it out and read some reviews. It is all about our journey with type 1 diabetes, but it also features some mom to mom advice. And it gives you some suggested questions to bring to your next doctor visit that always confused me. How am I supposed to know what to ask if I don't even know what I don't know. Hopefully I can help you out there. All right, I will see you back here next week for our regular interview episodes. Thank you so much for joining me.

 

Stacey Simms   11:00

I’m Stacey Simms, until then be kind to yourself.

 

Benny   11:08

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

 

Transcribed by https://otter.ai

Feb 20, 2020

When a child is diagnosed with type 1 diabetes, most of the time the parents are told that T1D won't stop them. People with diabetes play sports, climb mountains, pursue acting and singing careers and much more. But what happens if a young child is scared to get back in the swing of things?

Stacey has advice for a family she met whose little boy is so afraid of low blood sugar, that he's sitting out his beloved soccer games.

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 1 diabetes available on Amazon as a paperback eBook and audiobook and at Diabetes Connections.com.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

Hello, and welcome to a minisode of Diabetes Connections. Today I want to talk to you about a question that came up. When I traveled to Maine. This was a couple of weeks ago, I visited a group called the Maine P-Pods. It was a really fun event where I did my World’s Worst Diabetes Mom presentation. And we also had a presentation from Dr. Howard Wolpert who is a renowned endocrinologist and he talked about carbohydrates and really did a good medical presentation as you would expect. And then the two of us - this was really cool -. We got to Do q&a with the audience. So you had me, the mom, the lay person partnered with a pretty terrific endocrinologist. And then there were other healthcare professionals in the audience who were there kind of for support and popped in as well. I'm pretty sure they were also there to make sure I didn't go off the rails, because they hadn't heard me speak before. And when you're billed as the World’s Worst Diabetes Mom, I think they want to make sure you're not going to give the world's worst diabetes advice.

I want to share with you a question that came up that I think probably comes up more often than we realize. This was a mom and dad of a recently diagnosed I probably a couple of months in I'm sorry, I don't remember exactly. But my impression was, let's say six months ago, maybe four months ago. This was a six year old, and this six year old had been so excited to play soccer, really wanted to play soccer, loves soccer, can't wait to join the soccer team. But now with type 1 diabetes, the mom is sharing that the six year old is terrified to play soccer, because he is afraid of going low. And it's really breaking her heart, because he has a brother who is playing soccer and is doing just fine.

So the question was, how can I get my child over his fear of low blood sugars? And I thought this was a great question. Because what we normally get is all the rah rah cheerleading of, you know, our kids can do anything, and diabetes won't stop you and get right back in there. And, you know, that's probably what happens. Most of the time if the parents go along with it, right. It's for the parents to say, right, we're going to get right back in here we go, here we go. But this can't be the only child who is frightened for some reason. So what's going on?

I asked her a couple of questions. And I told her not to answer because, you know, there's only so much information you really want to put out publicly right and I don't want to pop psychologize that's really the turn of phrase, but you know what I mean? I didn't want to play psychologist when I'm certainly not in a, an educated position to do so. But no, it had the medical people there to back me up. I thought it was on pretty safe ground. So I asked her, What is he afraid of? Is he just afraid of that awful feeling? Right? He doesn't want to feel low? Is he afraid that it's going to be embarrassing that he has to leave the field for juice or that his mom is going to be checking his blood sugar? You know? Is he embarrassed about it? Or he wants to hide his diabetes? Or is he truly afraid that something bad is going to happen that he's gonna pass out on the field or he's going to die from a low blood sugar?

And then I asked her, again, not to answer in front of all these people. But where do you think the fear is coming from? Because a six year old is not going to decide that a low blood sugar is dangerous. Somebody's going to tell him this. And if that's what he's afraid of, where did that fear come from? Right. Take a cold hard look. Is it coming from the parents? Is it coming from a YouTube video he said did an older kid at school telling something?

I had a situation with Benny years ago, I want to say he was seven years old at a day camp. And if you're new to the show, my son Benny was diagnosed right before he turned two. He is now 15. And we've been all sorts of crazy situations. But he was about seven years old at a regular day camp. And he came home and he said, Mom, there's a kid at Camp who said, If I keep sticking my finger, I'm going to bleed to death. can that happen? So these kids get this fear, sometimes just from other kids who are just being kids, that other child, maybe thought he was helping? I mean, who knows? Right? Obviously, Benny and I had a whole conversation about how actually, the more you check your finger, the longer you will live, the better you will feel and the happier everybody will be. And he went back to tell us friend No, not gonna bleed to death. All right, one problem solved until the next one.

But my point is you don't know where the information is coming from. So these are a couple of things to figure out. And then what do you do? Well, I suggested that they talked to their kids care team, talk to their endo about this talk to their diabetes educator, because there's a lot you can do to try to avoid those lows. The most common suggestion is usually, to adjust your basal rate if you're using an insulin pump two hours earlier, you can adjust the insulin rate or just take the pump off right before you play and expect your blood sugar not to go down. It takes about two hours for those basal rates.

Part of the reason and I was very interested, I hadn't heard this before. Dr. Wolpert from the stage also answering this question said that there is often insulin on the end or in the canula. So even if you take off the insulin pump, that insulin is going to drip in over about two hours, which is one of the reasons why they recommend that you start adjusting two hours earlier. And I know you're thinking the canula that holds barely any insulin. But remember, this is a little kid, and there are very insulin sensitive adults as well. But when you think about a six year old, what does a six year old even weigh 50 pounds Maybe I should probably look that up. But you know what I mean? They're pretty tiny. Even a big six year old really isn't that big, and a little bit of insulin can make a difference. That's just one thing you can do.

Give a bigger snack, try to set things up a little bit better. Tell the coach, I mean, this is six year old soccer player, tell the coach he's going to play for 10 minutes, we're going to ease our way back into it to even play for more than 10 minutes. I mostly remember soccer at five and six year old as being five minutes of play. And then 20 minutes of snacking. I remember and I think I wrote about this in the book to the hardest part of soccer was that it was all snacks when they were little kids. And Benny never even ran around the field that much. His favorite part of soccer, was trying to stand as far back on the field. He only played when he was five and six years old, standing as far back in the field as he could kicking the ball as far and as hard as he could and trying to make a goal. And he did that a couple of times. So our soccer experience was a little bit different.

Something else that I thought about later but didn't think to suggest the time is talking to This child about professional soccer players with Type 1 diabetes. And I'm mad that I didn't think of this because this was a trivia question in my game show. I want to say last year, maybe the year before I do a game show every summer at friends for life, the big diabetes conference. And this was a trivia question. There is a footballer right a soccer player in Spain, Nacho Fernandez, he has type 1 diabetes, and he's the first person with T1D to score in a world cup.  Nacho was told that he needed to quit the sport that his days were done. footballing days were over when he was diagnosed at age 12. He said, No, thank you, I will continue to play and he did so and he has done another world stage. There are lots of footballers and professional soccer players with Type 1 diabetes. So you can look that up. If you have a child who's concerned you to find those people playing the sport or doing the activity. And there's a lot of articles about these people. Sometimes they'll give you tips and tricks and what they do and what they eat. It's really interesting. They can do it on a professional level, you got to have the confidence that your six year old can run around the field on a Saturday afternoon for a couple of minutes.

And then the final thing I'll say, and I did give this advice to the parents at the at this conference was, sometimes you just have to be the parent and tell them, it's time to do this. You're going to be okay. And we're going to go play soccer. I know it sounds harsh, but it's okay. And it's okay to say you are going to go low, and you are going to go high. And that's just diabetes. Maybe it's, you know, an age appropriate conversation about you are your own science experiment. We talked about that a lot with Benny, you know, we're not looking for perfection here. But we're going to learn from it this week. So we can do better next week. And we're just going to keep learning and learning. We're going to make mistakes. We're going to make different mistakes next week, but I'm here you're safe. It's fine. Let's do it.

And this is probably not a great example. But it's the first thing that pops into my mind when we say tell kids to do it sometimes. When Benny was potty trained. And please don't tell him I told this story. But when he was potty training, my daughter was potty trained in three seconds. She turned to that was it were done. She was Piece of cake. And Benny turned to I said to him, Hey, let's do this. Do you want to like, do you want to use the potty? And he said, No. So I said, Okay. And every couple of weeks, I would say, Is it time? Do you want to, you know, and he was saying, No, finally, when he was two and a half, I said, What am I doing asking my toddler? So I said to him, today's the day we're going to do it potty training. And he was like, fine, because right, and we did it. I mean, it was unbelievable to me looking back that I asked, stop asking, just tell them, and sometimes that can work. Now, obviously, you have to kind of figure out what feels right for your family.

And please, the best advice I think I gave here is to talk to your endocrinologist and your care team. But I really believe that if our kids are scared to do something because of diabetes, that fear is coming from somewhere and it can be addressed. So we it's up to us. Find the resources to get them over that fear. You're not a bad parent, if your child is scared, right? You're not a bad parent. If this lasts for a while, we're all just doing the best that we can. And sometimes, like with Benny at camp, the information, the bad information is coming from someplace that you don't suspect. You have these conversations. Keep trying, keep encouraging. Sometimes you're just gonna tell them this is how it is. What do you think? Do you have any advice for this family? You can always let me know I'm going to put this in the Facebook group at Diabetes Connections, the group you can email me Stacey at diabetes dash connections.com. Let me know if you think it this is off base. If any of this is helpful. I am the World’s Worst Diabetes Mom after all, so keep that in mind if you're thinking about taking any advice that I offer, but I will say the health care providers in the room back to me up, I'm answering this question and added some information.

In fact, the best thing I almost forgot the best thing a pediatric endocrinologist stood up and said, I want to reassure these parents, although I think it really is the kid. I don't think this fear was coming from these parents. They really wanted to get him back on the soccer field. He said, I want to reassure you that in the thousands of kids I have seen and that I think he was like 30 years in practice. He says, nobody's ever passed out on a soccer field. And certainly, nobody's ever dropped dead on a soccer field. He said, it just doesn't happen. And we have to get over this fear that our kids are on death's door, when they're diagnosed with Type 1 diabetes. They are not. He was amazing. You know, those are important to treat. You want to take care of business, you got to do what you gotta do. But don't be fearful. I really wanted to cheer. I was so excited to hear him talk about this. Because I think a lot of endos are reluctant to say those kinds of things, and certainly not on a public stage like that. It was great.

So let me know what you think. Tell me what your opinions are on this. How would you encourage a kid To not be fearful and get right back into sports, he will a lot of adults are reluctant to exercise because they're concerned. So what's your advice?

Coming up on our regular episode next week, I am scheduled to talk to the CEO of Dexcom. I do have a lot of questions. I know you have a lot of questions as well. I will be putting a post in the Facebook group there as well soliciting and finding out what everybody wants to talk about. We'll see how much time I get and we will try to get through as many questions as I can. So that will be our regular interview show coming up on Tuesday. I'm Stacey Simms. I hope to see you back there then. And until then, be kind to yourself.

 

Unknown Speaker  12:45

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged

 

Transcribed by https://otter.ai

Jan 30, 2020

Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress.

What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids.

Links referred to in the episode can be found in the transcription below.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

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

Beta Transcription - please excuse grammar, spelling & punctuation

Stacey Simms 0:28
Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two.

Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to Diabetes Forecast Magazine. We are in their January February issue as one of the top trending items for winter. It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading.

But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this.

So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe.

Now, I know what you're saying already, right? This is important. We need to show the real side of diabetes, right? We need to show more than the smiles when a kid gives himself a shot for the first time or you know, gets over the fear. If you listen to my longer show that airs on Tuesday, you know that every week we do a Tell me something good. And I very happily show pictures of those people who are featured each week, and I have been accused of being more positive and you know, too rosy sometimes. And, you know, but we're talking about realism. Right? Everybody says we need to show the hospital days they happen. We need to show diabetes isn't fair. Well, of course we do. Yes. Yes. We need to show that that is important. And I am all for realism. I promise it is not sunshine and unicorns and rainbows over here. But you know what we don't need to do to show that we do not need to exploit children. And that's what's happening here. These are kids who cannot give consent to be featured. They can't give consent. They're too young. And they have just as much right to their privacy as we do. How would you feel if someone took a photo of you at your most vulnerable, and posted it on Facebook?

Let's just back up and think about this. And I will get to when I think it can be done and how it can be done in a way that educates and informs and brings out emotion and still protects the child. But right now, let's say on these photos of distress, I did a little bit of research on this and there are a lot of articles about social media and photos. There's not a lot of research because this is Still so new. And when I see research, I mean real scientific published paper, that kind of research. But I did find some interesting articles. And I'll link all of these up in the show notes on the episode homepage. So here's an article from Dr. Kristy Goodwin, She's the author of “Raising Your Child in a Digital World.” She has a PhD in the impact of digital technology on children's learning. And she says that right now, sharing every part of our lives has been normalized by social media. But what happens really, when you dial it down is that it's a desire for a like, which is really a desire to feel connected, which she says is one of our biological drivers as a human, and it is needed to experience empathy. It does fulfill a purpose.

Dr. Goodwin says and here's a quote, “For many parents when their kids are seriously sick, they have lost all control and their world is literally spinning out of control. When parents go on social media, they have a sense of control over their life again, They can post things and choose exactly what aspects of their child's sickness that they want to post.”

Another article is from a pediatric hospitalist from St. Louis Children's Hospital, Dr. Shobha Bhaskar. She says, “We are all looking for support when our loved ones are not well, but when your child is running a fever or has a broken bone, please put down the camera step away from the screen. I'm sure if your child had a choice, they want to look their best to like you do. And your child would not appreciate a picture of them looking tired and rundown on the emergency room that we talk so much about patient privacy rules and rights. But what about the privacy rights of our little ones? Or do we think they just don't have any,” she says,
I'm going to take this one step further. Because I do think while we're on this topic of digital privacy, it's a good time to sneak in something else. In my Facebook group. I have a local Facebook group in the Charlotte area that I started, I don't know, maybe five or six years ago and when I wrote the rules and regulations for the group, the admin announcements. Here's what I wrote. “Please think twice about any pictures you post of your children. A picture of a pump inset on a naked toddler’s backside may be completely innocent, but there are creeps out there. This is a closed group, but there is no guarantee of privacy on any social media outlet. Please, please crop pictures like this very closely. So we can't tell what body part of it is for your child protection.”

And then I go on to say, “Same warning for posting pictures of your child in distress. This includes hospital pictures, pictures during illness, etc. You have our support and sympathy already, your child has his or her own right to privacy and may not appreciate being pictured online in such a manner. These pictures aren't banned. But take a moment to think about why you might want to post something like that.”

If you listen to carefully you might be saying Stacey what? They're not banned in your group but you just got on your high horse and told us how terrible they were? Well, they're not banned in my group, at least, and they are banned at some other groups. But here's why I felt like banning them outright would take away the conversation and the thinking, if you know that you're allowed to post them if you really need to, perhaps you'll stop and think about whether you want to a little bit more. And whenever anybody posts it, I usually send them a very gentle, private message, reiterating what I already talked about here in this episode, we support you, we love you, we're so sorry, Your child is hurting. But why are you posting that picture? Can you please think about your child's privacy? Sometimes I wait, because if the child's really ill, there's no reason for them to hear from me when they're in the hospital. Don't worry, I'm not direct messaging, a parent whose child is in a critical situation in the hospital and saying, could you please check your photo on Facebook? I mean, really, I'm not that cold. But I do if they're not in an emergency situation. I do do it right away, but it rarely happens in my group anymore.

What actually happens is we have conversations about why it's not a great idea, and what we're looking for, and what else we can do when someone's in the hospital. I mean, Benny had knee surgery a couple of months ago. And you bet I took pictures. We took funny pictures when they shaved his leg. I took a picture of his pump in the hospital gown. I took pictures of him and sent them to his grandmother, you know, going in thumbs up, that kind of stuff. I also took a picture of him coming out, because he was bundled up in so many blankets. He was so cold from the anesthesia coming out of it, he was fine. But that's not a picture he'd want me to post. But it was a picture he wanted to see later on. I knew he'd want to see how, you know, kind of funny he looked, but I knew he wouldn't want me to post it. So I'm not talking about not taking pictures, right. I mean, he had a terrible injury when he was about seven or eight years old, and we were in the hospital. And I took pictures. This was when we knew he was going to be okay when things had calmed down and he was stable. And I was sitting there with nothing to do feeling helpless. I took some pictures and sent them to my mom and my sister. And I showed them to Benny later on. I mean, they weren’t gruesome or anything. You know, if you're a longtime listener of the show, you may be thinking, I've never heard about this. And I'm not going to tell the whole story right now. You know, and I also it's a good time to point out that I don't share everything that's happened to Benny, I work hard to protect the privacy of my kids and my family in ways that make sense. So I have these pictures of him in the hospital at the time of that accident, but I didn't post them.

I did mention earlier, there are ways to do this. So how do you do it? Well, when he was in the hospital for his knee surgery, I posted a picture of I don't even know some of the hospital equipment, right, the IV bag, I posted something and I said, here's where you know, we're going in, everything's good. I'll keep you posted. That kind of stuff. And I've posted pictures of him drinking a juice box, you know, he's low and you can kind of see in his face he's look you know what to look for. Rather than a more dramatic picture I've posted on I use it to my presentations. Several years ago, I took a picture of his bedside table, which was just it was one of those horrible nights it was covered with juice boxes and test strips and, you know, inset changes, it looked like a war zone. And that conveys the difficulty of type one diabetes in a very similar way.

I posted this on my personal Facebook page, just to say, Hey, I'm going to be talking about this topic. And I was curious what other people in the community thought, and I got so much feedback. One of the pieces of feedback I got, which I thought was very, very interesting. And by the way, the vast majority of adults with type one that I heard from said, Please, please, please tell parents not to post pictures of their children. It really is something that I know people feel very strongly about. But I did hear from advocates who said, we need to get our cause across. We need to push we need to fundraise. I've two responses to them. One is we've been fundraising for JDRF and some other causes for 13 years. We have raised 10s of Thousands of dollars, we might be close to $100,000. If I sat down and added it all up, we have never posted a picture of Benny in distress. Has he been in distress? You bet. have I written about it? Have I talked about it? Sure. But we have found creative ways to show what goes on with diabetes. And I've never felt like I've exploited him to fundraise. And I know many, many other people who have raised a lot more money than me, who have never posted a picture of their child.

I also heard from people about what the DKA campaign. Now, if you're not familiar, there is a campaign and it's a great campaign to diagnose Type One Diabetes sooner. There are so many cases of children and adults diagnosed while they're already in DKA, while their lives are in danger. The most dangerous time to be type one diabetic is before anybody knows that you are and the thinking was, you know, we need to show the faces of this. We need to show what can happen so that laws can change. And as I'm speaking about this, I'm also thinking about the insulin for all campaign and People who are dying because they're rationing insulin, but I'm going to give you the example of Reegan Oxendine and this is a little girl here in North Carolina. She was a toddler. She died. She had type one diabetes, it was misdiagnosed again and again. Finally she was hospitalized but it was too late. And her story has been told several times, I'll link it up in the show notes. Previously Healthy was a wonderful bit of journalism, photojournalism done by the folks at Beyond Type 1, but I bring up Reegan because it actually illustrates the point I'm trying to make that we can affect change and we can get the point across even if in this case, it is a terrible point, without photos that are exploitive.

If you're familiar at all with Reegan’s story, what may come to mind is the most impactful picture in my opinion. And it's not her in the hospital, and it's not her looking ill and in distress. It's a devastating photo. It's just her mother's hands, holding Reegan's tiny little shoes. Her Shoes fit in her mother's hands. I'll post this picture. It's incredibly powerful. It's disturbing in its own way. But it is not exploitive at all. And it is a photo that really affected change. The law changed in North Carolina. Now is it as a strong laws everybody wanted and we've done episodes on this, I will link up more information on the episode homepage. As you can see exactly what happened. It's frankly, more of a recommendation for pediatricians but got the awareness out it got legislators talking about it. There are other cases of children and adults who have died. And they have been pictured online in many different ways. I am not going to judge those parents. You know, frankly, that takes us down a different road. I'm not sure how I feel about that. And it is certainly not for me to judge how those parents how those families react. However, that's not exactly what I'm talking about here. And I think we all know that I'm talking about the case of your child who's throwing up, run of the mill sick, you know, maybe has ketones that you're treating, who just looks awful. And you know, you grab the camera, because isn't that what we do?

It's so interesting to me how much things have changed. I mean, when Benny was diagnosed in 2006, nobody had a camera because it wasn't on our phones. Right? It never occurred to us to take pictures of Benny in the hospital with Type One Diabetes, being diagnosed because who would bring a camera to something like that? And you know what, I wish I had those pictures. Only because there were so many funny and touching and wonderful and and sad moments that I remember, but I'd like to see I'd like to see little baby Benny ripping off all the stuff that was on him. We had such a hard time keeping anything on him. He's like little baby Hulk pulling off the sensors and things like that. I'd like to see him maybe getting his first shot. He was so brave. I'd like to see his face. Sister hugging him, you know all the things that are in my head, but that I don't have a photo of. And it's because times have changed so much that we don't think about photos.

I have thousands of pictures on my phone, right? I don't even know what they're up anymore. We just take them in a screenshot and I save things and we don't even think about pictures anymore. But I'm telling you, these are pictures that we need to think about. I also think it's important to keep in mind and we all know this, but we don't really think about it when we're posting the internet is forever. And if you've posted a picture of your child in distress, child might be five years old, that photo will live forever. Your child will probably find that photo at some point in their life. So before you post another photo, just stop and think for one moment. I don't care if it's a closed Facebook group. I don't care if it's a private Facebook group. That's a bunch of bull. Nothing is private. In social media. The minute you hit post, somebody else can screenshot Somebody else can save it, somebody else can forward it, you have no idea where it's going, right? So just take a moment to think, why am I doing this? What do I need right now? If it's support and sympathy, I promise it's out there. If it's showing the real side of diabetes, I promise there's a way to show that without exploiting your child. And if the next time you post you're thinking, well, but think carefully, what comes after that. But what is stopping you? Is there a little bit of doubt in the back of your mind? If there is, you know, which other 10 minutes Think it over? You can't take it back once it's out there. I promise. There was love and support and sympathy and understanding and empathy and fundraising and awareness without posting these kinds of pictures.

Agree? Disagree? I know a lot of people feel very strongly about this. And I know when this gets posted, most people aren't going to listen to all the way to the end, they will see the headline and they will tell me I'm a terrible person. So keep in mind, I am the world's worst diabetes mom. You know, what do you think I really would love to hear from you. All kidding aside, we will put this in the Facebook group. I'll be talking about it on social media when the episode airs. And of course, I'm Stacey at diabetes connections.com. You can find that a lot more about the show about the book. And about this episode on the website. Of course there is a transcription. all the episodes beginning this year, have that transcription on the episode home page.

All right, back to our regular full length episodes every Tuesday, and then these minisodes on Thursday. I'm Stacey Simms. I will see you back here next week. And until then, be kind to yourself.

Announcer:
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged.

Transcribed by https://otter.ai

Jan 20, 2020

When 11 year old Elise Sammis applied for the Food Network's Kids Baking Championship, she didn’t think twice about telling them - right up front - that she lives with type 1 diabetes. She says she wanted everyone to know in order to show that diabetes wouldn't keep her from her love of baking, or anything else.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Turns out, there's another young woman with type 1 on the show this season! You can learn more about Naima Winston here.

Stacey met Elise & her mom, Natalie, at an event in South Carolina. They spoke about the show, the stress and her diagnosis two years ago at Disney world.

Join the Diabetes Connections Facebook Group!

In TMSG - good news at the dentist - and it wasn’t about cavities.. and we'll share a story of a lot of spirit at Walt Disney World Marathon weekend.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Episode transcript (rough transcription, please forgive grammar, spelling, punctuation)

-----------Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer:
This is diabetes connections with Stacey Simms.

Stacey Simms 0:23
This week, when 11 year old Elise Sammis applied for the Food Network's kids Baking Championship. She didn't think twice about telling them right up front - she lives with Type 1 diabetes.

Elise Sammis 0:36
No, that was very important to me, because I wanted like everyone to know that if you have diabetes, you can still do the things that you want to do. And it was super cool because there was another girl named Naima. She's my super good friend and she had also had type one, and she's super sweet. And we were both like, yay, we both have type one!
Stacey Simms 0:52
That's right. There are two young women with T1D competing on this season of the show. I met Elise at an event recently, and I talked to her and her mom about the show the stress, enter diagnosis at Disney World
in Tell me something good. Good news at the dentist and it's not about cavities and a lot of spirit at Walt Disney World marathon weekend.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of diabetes connections. I am so glad you're here. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two. The show this week is airing a little earlier than usual. Yeah, we almost always drop the interview show the longer show of the week on Tuesday. But because the Kids Baking Championship is on the Food Network on Monday nights. I thought it would just be fun to release the show with Elise on the day of her show.
I love the baking shows, and we used to watch them. I feel like it was around the clock for a couple of years my daughter got into them right around the same age as Elise between the ages of like nine and 12. We've watched so many of these baking shows, we made cupcakes, we didn't ever compete. My daughter never wanted to be on TV like that. But it was great. And we certainly got a lot of comments about the cupcakes because I would post them on social media and I'll put some pictures up in the Facebook group because these were, you know, really big. I mean, they weren't beautiful, but they were sharks and cupcakes that look like popcorn and you know, all the dramatic fun stuff. And people would say all the time. Oh, it's too bad that your daughter has that hobby. What are you doing about your son? And I'm like, I'm not letting him eat 17 cupcakes, but I'm not letting her eat 17 cupcakes either. You know, it's fine with Type 1 diabetes, you just have to know exactly what you're eating. Right? It does take extra work. But now go ahead eat the cupcake.
And with those memories right in the back of my mind, it was even more fun to talk to Elise and to Natalie It is always a bit dicey talking to reality show contestants. You know, we've done this before, and it is always fun. But it's not just about what they can't say because here obviously they can't talk about the show, even though it's taped weeks and weeks months ago, but because you never know they could win the whole thing. They could be off the show before this episode even airs. But I'm so thrilled that Elise is is one of two girls on the show with Type 1 diabetes and it was great to talk to her and her mom and no matter what happens on the show, she is well on her way quite a personality and really just a fun kid.
All right, first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain and not only the ordering and the picking up, but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test trip plans, plus you get a Bluetooth glucose meter, test strips, lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn the founder of One Drop lives with type one. They get it. One Drop, gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach. learn more, go to diabetes connections dot com and click on the One Drop logo.

My guests this week are Elisa Sammis and her mother Natalie. Elise is a contestant on this season's Food Network kids baking show. She was diagnosed with type one at age nine and we talked about her diagnosis. But she was already baking a lot by then. And luckily her family realized you can continue to bake and enjoy dessert even with Type 1 diabetes. Being on a big show like this is a great chance to educate and what's really fun is as we mentioned, Elise isn't doing it alone. There's another young woman on the show Naima Winston from Baltimore is her name and I will put some links and information on our episode homepage, where there is also a transcript about Elise about Naima about the show and more information. So please check that out. That's a diabetes dash connections.com. And while you're there, please note every episode from the last four years is there you may be intimidated to scroll through I get asked all the time, what's the best order? I actually think the best way to listen is either to use the search box and put in whatever interests you Disney, Dexcom, Tandem, Omnipod, right or you can search by category as well. If you click on the tab that says all episodes, you'll see another search box to the right and then filter by category. And that is a really great way to dial into what you want the categories including advocates, athletes, artists, actors, education, technology, travel, family, you know, there's a whole bunch of ways to narrow this down because we've got more than 270 episodes now Holy cow. And I really urge you to go take a stroll through and see what interests you. Quick note, this interview was done on the road, I was speaking at the JDRF chapter, the Palmetto chapter in South Carolina. So the sound quality is a little bit different than when I'm doing things in the studio. And I may be a little soft at times. I'll tell you about the technical nonsense that happened. I'll tell you about that at the end of the show. So let's get to it. Here is my interview with Elise and Natalie Sammis.
Let me start with you, Natalie. How did you guys even find out about this? How do you get your kids on a show like this?

Elise Sammis 6:38
Well, actually, I didn't get my kid on the show. Elise put herself on the show. Basically, we live in the south and hurricanes are prevalent. And about a year and a half ago, at least you think it was Hurricane Matthew and we got five days off of school. And so I was very bored around the house. So I looked up, like, because I like to bake and I was getting into it. So I looked up like baking competitions and I saw like form so that we could, like fill out a form so that we could try out. And so I made a video for it and I sent it into them. And after that we didn't hear until like six months later.

Stacey Simms 7:23
So during that five days and your home and baking was that your first foray? Was that your first time into baking or is it something you'd always like to do?

Elise Sammis 7:30
I'd pretty much always like to bake from like, I guess like when I got diagnosed with Type 1 diabetes when I was nine, it was really stressful. So it was just really like stress relieving to be able to bake and it was like creative.

Stacey Simms 7:46
Alright, so we have an audience that knows about diabetes. But what you just said when I was diagnosed with type one I found it really stress relieving – that could sound strange. What were your thoughts as she was enjoying this as a younger kid?

Natalie Sammis 8:06
The two background stories, I think that are important in this piece are that a I am an avid Baker. And so literally, sugar is in my blood at all times. No, I my motto is dinner is always just a means to dessert. That is my life motto since a small child. And also number two, I'm actually an RN, I have my Bachelor's of Science and nursing. So I understand the principles. I understand that Yeah, you skirt the line a little bit closer. When it comes to desserts. It is a little bit more complicated in your carb counting. But it's also it's very doable. It's not off the table. It's not something that someone should be terrified of. It's something that you can balance and put into your life. And also we realized that half the time that we bake, we don't even eat it really we are sharing it with our friends or we're posting it like on social media to feel unify with other people. People It is really, truly a creative outlet for us probably like how people feel with art, but I don't get art and I cannot eat art. So we just go with the dessert side of the world and we like it and we make friends by giving people desserts.

Stacey Simms 9:15
How old were you when you were diagnosed?

Elise Sammis 9:17
It was the day after my ninth birthday, and we were in Disney. And there was my birthday and my mom actually fed me a chocolate chip cookie for breakfast. Right there. So we were like noticing a lot of symptoms. I was really thirsty all the time. So then my mom took me to the urgent care clinic, the CBS for CBS. And like the MinuteClinic the MinuteClinic Yep, yep. And I got and she got a glucose meter and she thought as a UTI at first.

Natalie Sammis 9:52
Right. So she took a blood sugar first and it just read error. When the very first meter read error. The nurse in me problem solving. I thought, ooh, there's something wrong with the machinery that that Wait a second, I know how to litmus test this. So I stuck my own finger, I tested my own blood sugar and it said 96 I still remember the number and my heart sunk. I knew at that moment, deep down that she had diabetes, but I didn't even then didn't want to admit it. Because, you know, that's the worst. So we went to the urgent care and the urgent care. I still remember they looked at us like we were crazy because we walked in. And Elise is holding a Diary of a Wimpy Kid book. And she's just flipping through and reading it and she has a bottle of water in one hand, because at that point, I said, You drink as much as you can. Right? Right, right. Just drink this. And I said, I think my daughter might have diabetes. They look at me, like, does she fall down? Did she pass out? Like I'm like, No, but she's drinking me. Are you from the area? No, we're on vacation at Disney. And they're like, so you stopped your Disney vacation and you think she has diabetes? I'm like, I know. I basically said tell me I'm crazy. I want to walk out of here laughing like I'm just a paranoid Mom, I just cannot in good faith just go back home after seeing the error recording and having those symptoms and I just need to know so we waited quite a while because we were not on the urgent list at that point. And even the doctor said, I think it's probably just a UTI. But he respected my wish to check your blood sugar. And at that moment, their meter read error Hi. And they said he pulled out his personal cell phone and said go directly to Orlando Children's Hospital.

Stacey Simms 11:31
Do you remember any of that? I mean, nine is old enough, but sometimes things get confusing. Do you remember like, anything that your mom was saying? Or what's going on in the hospital?

Elise Sammis 11:39
Well, I remember that like when I got in there. I was asking like, Is it ever going to go away and everything then I remember the turkey bacon was disgusting

Natalie Sammis 11:49
They put her on this restricted carb diet. So all she could eat with like a massive amounts of turkey bacon,

Elise Sammis 11:57
turkey bacon. like sugar free jello.

Stacey Simms 12:03
So did you ever get back to Disney World?

Natalie Sammis 12:05
Yeah, we did we After that we went to Hollywood Studios. We took it that Disney paid for us for a taxi or an Uber. I can't remember which one back to our place that we were staying in the other. My Elise is the oldest of four children. So the other kids and my husband were already at the party because we said go on without us because we had been in the hospital for about three and a half days. And we got in that taxi cab we threw our suitcases in there and we saw the next bus to Disney and we ran our little hearts out and barely caught the bus and we didn't get to do too much that day. And then we went home the next day but Disney was kind enough to give us passes to come back and when we had kind of our life under control a little bit more and we understood more about diabetes in real life. We came back probably three months later in May

Elise Sammis 12:52
is a lot better experience than the last. It was a lot more fun. Okay,

Stacey Simms 12:57
so after Disney World when you go home You say you figured out diabetes in a bad life? You were already enjoying baking at that point. After all that turkey bacon. Were you worried? Like that's it for baking or cupcakes? Or did your mom kind of jumped right back into it with you?

Elise Sammis 13:14
Well, for about a week later, I was like, I don't even know like what I can or can't eat. And so we like kind of researched a lot. And then I was like, wait, I don't have to just not eat sugar. I can just take insulin for it. So then I was like, Well, I can still bake and stuff. And so that's I was like, yeah, you know, it's got really excited about it.

Stacey Simms 13:39
That's great. So what a whirlwind diagnosis and hopefully we'll have time I want to talk a little bit more about Disney World later, but let's talk about the bacon. You send in the video. You wait six months later, what do you hear what happens?

Elise Sammis 13:53
So like, I've been waiting and then another season came out, and that was like, they just didn't see it. The following, never gonna happen. And then like, six months later after that, I was on the bus and my mom called me She's like, you're not gonna believe who just called me. And I was like Harry Potter.

Stacey Simms 14:14
well, she was almost 11.

Elise Sammis 14:18
And then she's like, no, it's the kids baking championship people and they want to interview and I was like, Oh my gosh, yeah. So I ran home. We did a lot of Skype interviews, and I had a lot of assignments and I had to make a ton of desserts. And there's a lot of other videos I had to make for it. And there's a lot of interviews as the mom you know, please seeking I mean, this is an exciting time but at the same time it's a lot of hopes for a young woman to have Yeah, yeah. Nervous that after all of this work, she wasn't gonna get on the show. Oh, very, very guarded, I guess will be the word.

Natalie Sammis 14:53
I mean, I'll backtracking when she said mom can I turn in the video and I did have to click like I agree and I help fill in. Some of the, like contact information so it was correct, because at that point, you were 10 years old when she turned in the video. And I told I still remember and people laugh at me still, at least still less than me. My caveat was sure I'll turn in this video but you need to understand that you will never hear back from them, they probably will never see it and you're never going to be on that show. And if you're okay with all those three sentences, I'm feeling okay with letting you turn this in. Because I'm more of a realist. I am Elise is a is a goal setter and a go getter and a dreamer. And she proved me wrong every time so I don't know why I keep doubting it. But I just I think I do that out of protection as a mom and so yeah, as time went on, you couldn't even the process is when they Skype, the parent in the room is not allowed to be in the room. You can't be there. They want the kids to stand on their own. They don't want some mom in the corner given them most of coaching and so I would put my ears to like the door but I have a he was four at the time. And he would be like read to me we've got this new dog that was like two months old and an idiot, so I'm literally like hearing every fifth word. And even then I'm like, oh, like so excited out of my mind that I couldn't even concentrate. So I mean, it was crazy. Just week after week, it went on for from March until June, just on and off on enough like, yes, you made it to the next step. Then we would hear crickets, crickets crickets, and you don't want to be the annoying mom. And then they not pick you because you're this weirdo psycho. So you had to play it cool. You have to kind of just wait for them. And then the next kind of like little piece of cheese would come and he would chase after that.

Stacey Simms 16:34
so then this is going on for a while. When did you really start to get close? What happens? I don't know how much you can share. So don't tell us what you can't. But how do you know that? This is going to be it?

Elise Sammis 16:44
Yeah. Well, we were doing all these interviews and videos and I was it just kept going. And I was like, when are they going to cut to the chase and like, actually do it. And so then we got a call in like early June. They're like, we want to fly out 15 kids, we're gonna send three home and all the other ones are going to be able to be on the show. And I was like, we're finally going to LA.

Natalie Sammis 17:09
Yeah. So we knew flying out there all the way to all this work. I mean, this is now we've been up till 2am, baking things having to print that present the next day unless it's work. I mean, huge amount of work. And it's a risk. It's

Stacey Simms 17:24
already going home. And then the competition, you know,

Natalie Sammis 17:27
oh, yeah. So our goal was to get on the show, and knock it out the first episode. And we didn't do those things so that we can just hang our head forever.

Stacey Simms 17:36
What happens when you're there? I mean, you know, kids are generally pretty friendly, I would think. I mean, you want to be friends, you're hanging out. There's got to be a lot of downtime. If you're not familiar with TV production, there's so much downtime, is it hard doing that knowing that they're not going to stay?

Elise Sammis 17:52
It was super hard because like, the first day like all of them were super nice, and they're all like super friendly, and like we went to the mall, and we hung out at the pool together. And like, I didn't want any of them to go. But they had to, there was no thing in me that was like, I want so and so to get out. Yeah.

Stacey Simms 18:13
So yeah, be nice if everybody could win. But that's not how the show works. Yeah. All right, what can you tell us because a couple of episodes have aired already, but when this podcast airs will probably be further down the road. So I'm curious if you can share anything about what goes on behind the scenes because I've seen the show and some of it looks very ordered. Some of it looks very chaotic. is some of that chaos planned? Or is it just you guys are really doing what you're doing? What do people really knock stuff over?

Elise Sammis 18:38
Sometimes they would tell me to ask how are you doing so and so? And they really like good. And then sometimes they would say like, tell all the other bakers you have 15 minutes left. And the other stuff we would just say random things. Yeah, your mind.

Natalie Sammis 18:56
Well, it was funny to that. I think there's a couple times that the cameras People I thought it was interesting. They have 13 different cameras going to get all the angles. They have one big overhead camera. And she said, anytime anyone made a mistake, you knew it, because you'd feel the crane. Whoa, hovering over you. So you didn't want the big camera to go on you. You knew that either something's on fire or going downhill fast. So no one wanted the big camera to be swooping in their direction.

Stacey Simms 19:27
we haven't really talked about diabetes and the show. That was in your video, some of your audition. Yes. You mentioned it. Was there any hesitancy on your part to put that in? Was that important to you

Elise Sammis 19:37
know, that was very important to me, because I wanted like everyone to know that if you have diabetes, you can still do the things that you want to do. And it was like super cool, because there was another girl named Naima. She's my super good friend and she had also had type one, and she's super sweet. And we were both like, yeah, we both have type one.

Stacey Simms 19:55
I was gonna ask you about Naima because I'm obviously we're not interviewing her for the show, but I've seen her story. Well, and it was incredible to me. So far the posts have all been, oh, there's two kids with type one on the Food Network. And everybody's been saying no, no, no, you're confused this name and no, you're no, you're confused. Oh, it's really

Natalie Sammis 20:12
well, well, even we were confused. But we walk in the first day and its orientation and all the sudden I'm hearing Dexcom alarms and I'm going Elise, Like what? Like, like it is because it sounds too far from us. And she should have it in your bag. And I said, Who's next column? What Where's your Dexcom? And then this other little girl pipes up and says, Oh, that's mine. And that moment, it was that instant bond of like, you have to wait, we have to. It was our first I think your first real friend like you have acquaintances that have type one, but this is the first time she connected with some one else on this kind of level who has type one and I think that's special.

Stacey Simms 20:48
So you guys have kept in touch.

Elise Sammis 20:50
We have a big old group chat. We all talk every day.

Stacey Simms 20:54
That's cool. I wish I can ask you more but I know Yeah.

Elise Sammis 21:00
Did any of the other kids talk to you about diabetes? I mean, kids don't always do that. I'm just curious. They were pretty curious. And they're like, what's on your arm? And I was like, Oh, that's my insulin pump and everything. They were super nice and they're like, they didn't really care about it. They were just super sweet.

Stacey Simms 21:29
Did any of the parents because I mean my son doesn't bake and I remember when I've been parental settings for sports or there's always somebody who's like, well can you really eat that? You know, anything like that?

Natalie Sammis 21:30
No one really I think because we had gotten that far. And they knew we were that serious about baking. They can't bear Yeah, there's two of us they dare not I think what we are all became like very good friends. I think it's always eye opening when you get to know other people that the little bit of understanding of what type one really means day in and day out and on vacation and we were in a very stressful situation and we were up I mean, her blood sugar would just go crazy every time she baked it every time she was on set I wouldn't even let her eat a single carb because I already knew her blood sugar would be through the roof when she's getting stressed her her levels go high and so her Dex have just been going off. I can't believe we can't hear it at the show you you are only there but it almost felt a little good to be able to just kind of explain and see what is really like it Yeah, we were up at 2am and 3am and 4am treating highs and then treating lows and this is our everyday and oh at least go change your pod or and they kind of like look at you with like huge eyes like you do this every day and you're kind of like Yeah, we do. It's all right that like what I am so proud of at least and I don't know if everyone told you this really but she did not once ever use diabetes or her blood sugar level as an excuse whenever she didn't perform how she wanted to perform or when she was stressed or other kids won certain competitions. She Never ever, ever even had that in a thought like it does not hold her back physically or mentally ever. I want to have my little mom sign like “do you know her blood sugar is 328, do you know hard it is to be thinking clearly?!” like, I just wanted to say that like you don't understand how cool she is right now.

Stacey Simms 23:19
So but let me ask you because obviously diabetes did not stop you from doing this. But did anything happened during the competition where you did have to leave to change a pod? Or it Did you know, mess you up? Did anything ever happened along the way because it does happen sometimes.

Elise Sammis 23:32
Thankfully, like nothing like sometimes the medical my medical person, she was super nice. She would like come over and give me some insulin but I would just keep on baking and she would like BB

Stacey Simms 23:46
Yeah, so was this somebody that the show provided

Natalie Sammis 23:48
that they had two medicd, so they had one assigned to Naima one assigned to Elise and I'm sure they would cover the other kids who like cut themselves to cut themselves on fire, but they were basically there to hover over The two diabetics.

Stacey Simms 24:01
Did you ever catch yourself on fire?

Unknown Speaker 24:02
No but someone did we had to slap it down with a giant pan.

Natalie Sammis 24:07
Yeah, yeah, there's some fire soon. Yeah. Spoiler alert. Awesome.

Stacey Simms 24:13
So much to ask you about the show. But I'm curious as you watch the show, the judges are a big part of it. You know, were you nervous meeting them? Was it fun? Anything stand out. I don't know what you could tell us.

Elise Sammis 24:25
It was super exciting meeting them and like Valerie was super nice. And she was just like a mom like the whole time she like was very nice. That was nice.

Stacey Simms 24:37
Sweet the judges of Valerie Burtonelli, who we all know from one day to time, all those great shows and then Duff is the.. he did Charm City cakes, right? Yeah. Duff Goldman. We were huge fans. My daughter is in college now. But we watched Charm City cakes a ton. He was our guy. Yes. And you said he was interesting?

Elise Sammis 25:00
He really funny and like sarcastic and he was really, like nice about the judging and everything and he was really, like supportive.

Stacey Simms 25:08
Maybe you can answer this. They also seem like they're taking it seriously. I mean, they're Valerie's nicer. Some it seems right to the kids, but they're straightforward. They're not telling you Good job when it wasn't right?

Natalie Sammis 25:20
Yeah, well, what's actually funny on I never got to meet them. They only let the kids talk to them meet them. I saw them through like closed circuit TV with no audio feeds, because their parents had to have some sort of eye on their child, but I didn't even get to meet them. But when those kids would come back from tastings and judging things and just baking during the day, they would just say, oh, def came over and talk to me and he was funny, and oh, Valerie, like gave me a hug and I trusted the kids in that setting there. They're not the other I don't want to call it other people's judges names and other shows, but they're not harsh. They're not on kind but they are they are very, they're.

Stacey Simms 26:03
Yeah. They seem to balance the fact that there weren't a kids show. Yeah. But if you're going to be good feedback,

Natalie Sammis 26:07
yeah. If you're going to get that far, though, and how hard we work to get there, those kids can take it. They're not delicate flowers at this point.

Stacey Simms 26:15
So of course, you can tell us how everything went in the end of the show, and you won't get in any trouble. even letting a word well done. I obviously can't ask you about the outcome. And I would never. Was it fun are you glad you did it?

Elise Sammis 26:29
It was super fun. I'm so glad that I did it because it's such like a good experience. Like you got to meet so many friends. It was really like a lesson to me about patients. Because all those interviews and all the time that was like put into it. It was a lot and yet there's a lot of waiting. So that was a really good lesson for me. Do you still enjoy baking? Is that something you think about? Please do? Yes, I feel like I would always do baking is really fun. In like, it likes me be creative.

Unknown Speaker 27:02
This is a good experience for your families.

Natalie Sammis 27:04
It was a really good experience me and at least had a great time. We were kind of out there as buddies. And then my, my husband and the other three younger kids flew out for a couple days to visit us. And they decorated our hotel room with balloons galore and messages on the mirror of good luck. And the little kids and me, myself included this kind of trail along on her coattails and got to have this amazing experience. So it was wonderful.

Stacey Simms 27:30
I have to ask you, she was three younger children. Do they know the outcome? Because I wouldn't trust my kids. No offense, I don't know your family.

Unknown Speaker 27:41
No, they don't.

Natalie Sammis 27:42
They even will sometimes, like try to guess and like act like it's real. They're like Oh, so and so did this and they probably did this or that and will be like, oh, whatever you want to think like we don't even validate it because the the what's the number at least that we will be sued if we let information that we

Elise Sammis 27:58
will be sued 750,000

Natalie Sammis 28:00
Yeah 13 page contract saying that we will not disclose information so we didn't tell the five year olds Yeah.

Stacey Simms 28:07
Anything something else exciting that you all are a part of and I guess this is pretty brand new is your clinical trial for horizon from insolent which is the hybrid closed loop system using Omnipod? So Natalie, can you share a little bit about what is being tested? Is it the full system with the phone app?

Natalie Sammis 28:26
Yes, it's the full system. So it involves they gave us a brand new Dexcom transmitter that has the capabilities of obviously talking to the the Omnipod and to the new I don't do they call it a PDM Do you remember lease, I don't know. They still called the PDM. But it's basically a locked out Samsung and they provide that as well. Along with pods that look identical except for this little blue tab. That worked just the same. Also, what I really really like about this, the whole point of it is that you are able to put it in that Automatic mode they call it and with the auto mode, it's every five minutes the Omnipod index home will talk to each other and adjust the Bazell every five minutes as needed. What's cool about it too, is let's say you forgot your PDM you're locked out Samsung somewhere. Even if it has no range, if you could throw it off a cliff even for at least three days, your basal insulin would still be being adjusted because the Dexcom and Omnipod can talk to each other independently.

Stacey Simms 29:29
Have you used any hybrid closed loop stuff before?

Elise Sammis 29:32
No, this is our first time.

Stacey Simms 29:34
All right. How many days? It's only been a couple of days. We started last Wednesday today. To 60 All right, though. Yeah. So have you seen a difference?

Elise Sammis 29:42
Yes, it is crazy. Like even we went to Disney World last week, and I ate a ton of junk and everything. And I like went to sleep and it would be a little high but that's what your blood sugar does. And I went to sleep and for the night It would be like a straight line I was so amazing it was it's a big difference. Just the normal taking insulin every time you hear ringing

Natalie Sammis 30:09
Yeah, it is just made me feel like less of a nag to like, oh at least check your blood sugar. Oh, I heard your alarm three times a baby. Have you looked at that like that is now silencing our neck. So I have high hopes for it and it really is giving us better control. She's in that crazy stage of life being 11 about to be 12 where it makes no sense. She goes to sleep it looks like she ate a box of Krispy Kreme Doughnuts for no reason and it's nothing but hormones and I don't know unexplained highs and lows. So already this week, it is refreshing to see so many more straight lines. I mean, there's still today we were stuck in the three hundreds for hours and that's just what it is. And but I'm really pleased so far and I'm ecstatic to be able to have it for longer than the three month trial period.

Stacey Simms 30:57
All right. Before I let you go you said you have at Disney World, you ran in half marathon full marathon

Natalie Sammis 31:04
on Team JDRF. The half marathon half marathon.

Stacey Simms 31:07
Yep. So you went back to Disney World. You ran the team JDRF half marathon. Let me ask you first though at least what's it like for you to go back at Disney World? Do you think about diabetes you just have fun when you're there.

Elise Sammis 31:18
I have like weird flashbacks kind of. Because I like like remember walking in that same spot being like, all frazzled, like what am I going to do? But then like going back and feeling like Well, I'm kind of normal now. Like, I got it under control. So like happy for me.

Unknown Speaker 31:35
That's fantastic. So like,

Natalie Sammis 31:37
I had some a mom, I'm going to get weepy no problem very silly. But to see it come full circle to leave Disney World that first time. And you know wonder what your future is going to be like wonder what your daughter's life is going to look like. It's kind of being scared out of your mind. And then to come back to the literally the same place in Disney. I don't know. It has some feel to it. Like, even if you had gone 20 years ago, there's something magic. There's that little spark of Disney that kind of remains the same. So it puts you right back where you were in this time to feel so much confidence. And I still remember on the half marathon, you turn a corner and run into the Magic Kingdom in the it was still dark because it's a ridiculously early marathon. But the castle was all lit up. And I had this like moment of like, Oh my goodness, we've made it so far. I am so happy where where we're at now. We're beating diabetes. I'm not being beaten by diabetes. And at that very moment, as I'm like, getting all bizarre and emotional. I look up and there's Team JDRF fans, right? They're saying that moment of like, oh, then I'm like, wait, I can't praise because I'm practice. So I stopped crying and I kept running and that was it. But yeah, it is a quite a journey, I guess, to come full circle and to go back in that way with so much support and so much like people behind you and helping you raise money for a cause, you know, to help your kid just live a happy, normal life. So it was great.

Stacey Simms 33:18
Thank you both so much. I would say Best of luck, but it's all. So excited to watch. To see how this goes. I hope you'll come back and talk to us again. Thank you so much.

Unknown Speaker 33:29
Thank you.

Unknown Speaker 33:35
You're listening to diabetes connections with Stacey Simms.

Stacey Simms 33:41
Alright, so fingers crossed for Elise and for Naima. I am taping this just after the second episode has aired. So who the heck knows what has happened since and what will happen going forward, but we will certainly be following cheering these girls on. Up next. Tell me something good but diabetes connections is brought to you by Dexcom.
And you know, when Benny was very little, and his fingers would get wet, right? I'd give him a bath or we'd go in the pool. I would always notice his fingertips. And you know exactly what I mean, right? They were poked so much that they were just full of little little pinprick holes. You could see when they got wet. He is 15. Now, I don't really see his hands much anymore. But the other day, he's such a ding-a-ling. He was doing a project for school. He was using a hot glue gun and he you know, he burned himself a little bit. He's fine. He's fine. But when he came into show me I noticed again and every time I do see his hands, it just knocks me out. his fingertips look normal. We've been using Dexcom for six years now. And with every iteration, we've done fewer and fewer finger sticks, the latest generation, the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day in the past. Makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If you're glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. learn more, go to diabetes, connections calm and click on the Dexcom logo.

It's time for Tell me something good. I've got two great stories one was sent to me via Facebook Messenger. The other one I saw in a Facebook group and if you've got a story for me, the easiest way is in my Facebook group at diabetes connections the group or email me let me know what's going on. What is good for you.
Melissa wrote in “I have a Tell me something good. I've been listening to your podcast since maybe the summer and my four year old daughter was diagnosed March 28 2019. You are very optimistic. I haven't found a positive thing with my daughter's diabetes. Until today. It's been a horrible nine months with everything. We had our first dentist appointment Since diagnosis I've dropped a lot of ball since April, when the dental hygienist saw the pump. She knew what it was. I didn't have to explain. The conversation got direct to where we treat for Lowes, Skittles and starbursts and gummies. All bed for her teeth. When the dentist came to check, we had a discussion about the candies. He asked for her Endo's name, and he knew her. He's the pediatric chief of dentistry at the local Children's Hospital where her endo is affiliated, he texted an email to find better candies to use instead of the sticky kind. He went on to say collaborates with a lot of specialized doctors in the Children's Hospital to take better care of the kids. And he said get back to me after a discussion with the endo. I found the experience relieving that I wouldn't have to fight this battle. The dentist got it and my daughter was in good hands being cared for. I didn't think I'd ever find anything positive about our new normal. Today I did. So that's my Tell me something good.”
Melissa, I'm getting emotional reading what you're saying here. Thank you. She writes for your podcast your optimism, and having somebody to tell the story to understand. Her daughter's name is Katarina, beautiful name. And she told me that it's been difficult to find care for her. You know when they're that little it can be so hard preschools, that kind of thing. But she went on to write that they have been blessed. She's been taken care of by her school nurse in an all day preschool. Her endocrinologist who they love and her mother, Melissa's mom, the grandma, who was able to watch her while the parents are at work, and now the dentist, she writes, “I didn't realize until this how lucky we have been. These are battles. I do not have to fight. Your optimism about any life with T1D is something I was envious of. I wanted some of the burden of this disease lifted off of my shoulders, and I was able to see that I have that after this visit. So I'm a little bit emotional here because of all the nice things she said and just having a place to share that with right. It's important to have people who get it and know important it is that the dentist didn't scold her and say you shouldn't be doing that. But said, Let's find a way to do this that works with Type 1 diabetes. And I think that's fantastic. But if it was a little strange for me to hear, even though I know it, I am very optimistic. I am very positive. I put these rose colored glasses on a lot and diabetes is hard.

Type 1 is difficult. Being a parent of a kid with type one it's difficult to it's not all sunshine and rainbows over here. Trust me, I hope I'm open and honest about it. But at the end of the day, we've been really lucky. And I am optimistic and if you're feeling down or things are hard, no judgment, man. It is hard all around. I think I do an okay job of being honest and sharing the ups and downs. But I do know that my general outlook with type one is is an uplifting one. I hesitate to say it because I feel like it's an odd thing to say I feel like it puts me like I'm trying to be uplifting, but the truth is that's how it was presented. To us when Benny was diagnosed, and that makes all of the difference. When you're diagnosed on the very first day you meet a nurse who says, he's going to be fine. I have type one. And I have one child at home and I'm pregnant with my second and don't listen to the scary stories and don't listen to the hard stuff. It's fine. And then the next day, you pick up the phone and call three local people that you know who have kids with type one, because you've met them in your health reporting over the years, and they all say that he's gonna be great. My kids Is this my kid does that it's fine. It really changes than if you don't have those things. And I know how lucky I am to have them. So Melissa, thank you for reaching out. Thanks for a little bit of the gut check, as I like to say the rose colored glasses, but send us any good news and send us anything you want to vent. I hope you join the Facebook group. I'd love to hear more about Catarina. Our other Tell me something good this week comes from the Walt Disney World marathon weekend. That's where Natalie Sammis was when they said they were in Walt Disney World again. Very recently. She was running the half marathon. You talked about with all the jdrf people, they're getting emotional. Well, there's so much going on for that weekend. And I wanted to spotlight Julia Buckley, who's a friend of mine and I've mentioned her on the show before. She is a flight attendant and she is amazing. And she won the Spirit Award for jdrf. She ran on Team jdrf. I don't know how she does it. She flies all over the world comes home runs at Walt Disney World. She always has a smile on her face. So Julia, thank you so much for all that you do. I love some of the pictures maybe we'll throw some of those in the Facebook group as well but to everybody who ran at Walt Disney World, hats off man and now it's a fun race but it's still a lot of work. If you've got to tell me something good story, send it my way. I am so excited. We're getting more and more of these all the time or put them out on social media every week. So I'd love to hear from you tell me something good.

Before I let you go, this is not a Tell me something good. This is a Tell me something embarrassing. So I mentioned the very beginning of the show that there were some technical difficulties when I recorded the interview with Elise and Natalie. And real quick, the way I taped the show, usually is that I do the interviews right from my home computer. I have a little setup little home studio. But the interviews are generally conducted via Skype, and then into my computer and then into a backup hard drive. Later on, I record this part of it like a round the interview, right and that goes right into the computer. But when I'm on the road, I don't want to slip my computer. It's only got one input for the microphone, and I had basically needed three inputs. my microphone, Natalie's mic, and Elise's mic. So I use I mentioned that hard drive. I use a recorder for all of you audio files out there, I use an H five zoom. It is a wonderful little recording device and i i only scratched the surface. I know I'm not using it to its full potential. I can plug two microphones in there. And I know I can do more with it. I could use a sound mixer or whatever. But generally when I have more than two microphones that I'm using a plug two and two Each five zoom. And then I have another recorder where I put on a lavalier mic and a little Clippy mics that you see on the evening news or maybe you've done an interview or recorded something for work and they put a little clip mic on your collar. That's a level layer mic, and I use that for myself. And here's the embarrassing part. The recorder I use when I do that is an old iPhone. And I'm not even sure how old it is. It might be a four, it might be three. It doesn't work anymore for anything else. I mean, I don't certainly have service on it. But it is a perfect dumb recorder. And it's like a tape recorder back of the day. And I had purchased over the years, these level ear mics that plugged into your phone. They're fantastic. But when you switch to the newer iPhones and you got rid of the headphone jack well guess where the lav mic plugged in. So I'm out of luck. I can't use my newer phone as a recorder if I want to use the lav mics. So we get to South Carolina. I'm setting everything up. I'm there early and speaking doing a book event before First I'm going to interview with Lisa, Natalie. So I set everything up. Everything sounds good. The stick microphones, the regular microphones, the one if you ever see pictures of me the ones that have the logos on them. Those are plugged in. They're working fine. They're a little low. I'm not really sure. I think maybe Elise was just very soft spoken. So I'm trying to adjust audio levels. I plug my stuff in, and the old phone, the editing software will not open. I use a program called twisted wave. And it's a great program. It's it's up to date, but the phone is so old. I think it was trying to update the the editing software. So I said, forget this. I'll just use my voice memo. So every phone has a voice memo app. It's fabulous for podcasting. It really works well. You can just record your voice for however long and then you email it to yourself. I have guests do this. Sometimes if it's a really short interview. I don't do it much. But you know, once or twice. I've had people do a short segment and a voice memo is great for them. So it looks like it's working. Everything's fine. We do the whole interview. voice memo is there I can hear it. It's recorded Elise Natalie are fine. I can't Email the file to myself. I can't get it off the phone. It's stuck on this old iPhone three, four. It's sitting there. It's It's wonderful. Amazingly, the microphones I was using picked up my voice enough so you heard the interview. It wasn't terrible. It probably wasn't great, I'm sure john kennis my editor worked a ton of magic on it every time he gets a file from me probably shakes his head and said, yes, this person obviously worked with a technical producer her entire radio career. So I'm now in the market for a new level ear mic, because if you know anything about audio, and you heard me say the h5 zoom, you know that you can also plug a lav mic or any kind of really smaller mic into another outlet very easily. And this whole thing could have been avoided if I had just done that. So that was my adventure. I figured we'd just soldier on right you just want the stories. You're less concerned with pristine studio sound, right? Haha. Well, look, I'm going on the road a lot this year. So I figured I better learn how to do that. And figure out how to better get it done. So stay tuned for the continuing saga of how the heck Stacy makes her lovely mix work. Alright, the next stop is not too far from me. I'm going to Raleigh the first weekend in February Raleigh, North Carolina for a jdrf type one nation summit. Then I am going to Maine the following weekend to South Portland, Maine, to talk to the main pea pods, very excited to talk to this group. And we have a very busy schedule after that. Thank you, as always, especially this week to my editor, john Drew kennis from audio editing solutions. Thank you for listening. Remember this Thursday, we do have another minisode coming out this week. I'm talking all about untethered, what that means, why we have loved it. I got a bunch of questions after I mentioned this in a couple episodes back. I talked about receiver a little bit which is a newer, long acting. So I'm going to go through untethered, what it means why it's not just for teenagers, and why we've had such good success. With it, and that is our next little mini episode. I'm Stacey Simms and I will see you back here on Thursday.

Benny 46:11
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged

Transcribed by https://otter.ai

Jan 9, 2020

Are you worried about sleepovers? Wondering how to plan? Stacey answers a listener question and explained what worked for her and Benny.

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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.

Jul 16, 2019

It was supposed to be a vacation at the happiest place on earth, instead their daughter was diagnosed with type 1 diabetes at Disney world. But that’s when some unexpected good things started happening.

Join the Diabetes Connections Facebook Group! 

Jim tells us the story – it was July last year – and explains how Disney  and a very cool Disney community - went above and beyond to help this family from Canada when they needed a little magic.

Find out about Touring Plans here

Find out about the Lines app here

Our episode with Len Testa all about using Disney math for type 2 diabetes (and Len's great Disney advice)

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In our Community Connection, Stacey talks about dropping her son off at a month-long sleep away camp. She shares how she needed a lift and got it from her local D-mom friends. 

And Tell Me Something Good! Scholarships for college students with type 1, a big thank you and a mountain milestone.

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Show open: What's on this week?

1:30 Welcome - Stacey talks about the Friends for Life Conferences and announces a limited presale of her book! Find out more here (and use promo code "earlybird" until July 23)

7:10 Interview with Jim about his family's experience when their daughter was diagnosed at Disney World

29:10 Community Connection: Stacey shares her experience dropping Benny off at "regular" sleep-away camp.

35:45 TMSG: Beyond Type 1 / Diabetes Scholars awards over 50 scholarships! Learn more here

A dad thanks the security guard that tracked down a diabetes bag left behind after a school trip. 

Follow Project 50 in 50 on their quest to summit the highest spot in all 50 states.


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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Jun 4, 2019

With Father’s Day coming up we’re taking a look at Dads and Diabetes. Two T1D Dads: Alan Nolte and Mark Turner share their perspective on raising children with diabetes. 

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Alan and Mark met when their daughters hit it off at diabetes camp last year. The girls became long distance friends and so did their dads. They started a podcast - Dads and Diabetes. They share their stories with Stacey, give us the "guy" perspective and explain what they'd love more D-Moms to keep in mind.

In our Community Connection, a quest by two T1D outdoorsmen to summit the highest peak in each state in the US. We’ll find out about Project 50 in 50 and how you can get involved.

Tell Me Something Good features a 5 year old who's finished second grade! And Stacey shares her daughter's high school graduation. 

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00:00 Show open and "tease" - what's on the show this week?

2:00 Stacey Welcome - Find out about the 2019 DiabetesMine Patient Voices Scholarship Contest. Attend their November conference and learn about new technology. 

4:50 Interview with Mark & Alan of Diabetes Dads

39:00 Stacey talks about diabetes camp (continuing the conversation from the interview)

41:00 Community Connection: Project 50 in 50

45:00 TMSG! A first haircut, a T1D Kindergartener who finished the school year by also finishing first AND second grade and Stacey shares more about her daughter's high school graduation. Listen to "Our T1D Decade" episode here; Stacey mentioned this episode as having a good sibling conversation with Lea. 


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Dec 18, 2018

The Mure family won 50-thousand dollars in the Great Christmas Light Fight on ABC and gave it to JDRF. Stacey talks to Joe Mure who wasn’t sure he wanted to compete at all. He hung up twice on the producers! Joe’s son was diagnosed with type 1 at age 5 and we get the story behind the Little North Pole and the network competition. 

If you'd like to donate to JDRF via The Little North Pole, click here

Plus, who is the Hangry Woman? We talk to Mila Buckley about finding support for a younger person with type 2 diabetes.

Also this week, Stacey reports that CW Star Austin Basis (Beauty and the Beast and more) has published his comic books, The Kinetix. We talked to him earlier this year when the stories about a superhero teem of kids with disabilities was launched on Kickstarter. Listen to that episode here. 

And, with this last scheduled show of 2018, a look back at an amazing year.

 
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Stacey Welcome: We talk about the Kinetix from Austin Basis

Interview with Joe Mure about the Great Christmas Light Fight

26:30 Interview with Mila Buckley - The Hangry Woman

47:30 Looking ahead to 2019 (sneak peek at upcoming shows)


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Dec 4, 2018

It's Stacey's family's 12 year diaversary. Benny was diagnosed the first week of December in 2006 just before he turned two. This week, Stacey takes a look back and gives an update on how they're managing now. There are significant changes to share; Benny started an untethered routine about two months ago.

Learn more about untethered here. Also known as POLI (Pumping On Long Acting Insulin) untethered means you take long acting insulin like Tresiba or Lantus once a day but also use the pump. Stacey explains more. 

Also this week, one of the biggest changes in the past 12 years has been the rise of smart devices. Stacey talks about Klue, a new app that can sense when you’re eating and help you with boluses! Check it out and sign up to Beta here. 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. 

 
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1:30 Stacey welcome & reads reviews

6:40 Stacey reflects on life in 2006 when Benny was diagnosed

9:40 Diagnosis story

17:00 Big recent changes we've made: switch from Animas to Tslim last year. Got Basal IQ in late August. Started Untethered management in October.

Listen back to our Ten Year episode featuring Stacey's whole family

35:15 Interview with Klue's Katelijn Vleugels

46:20 Some programming notes, two more shows left in 2018 - no show the week of Christmas. Book Stacey for events for 2019 (the calendar is already starting to fill up!) email stacey@diabetes-connections.com 


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! 
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Nov 1, 2018

This bonus episode is about running, community and finding a way to make a difference. It's a great way kick off Diabetes Awareness Month. 

Stacey worked with Tammy Lowry in her previous job at a radio station. In 2015 Tammy's son Jackson was diagnosed with type 1, just a few weeks before they were both set to run a half marathon to benefit children's cancer research. Jackson's diagnosis took him out of that race, but it led to bigger goals.

You can read about that first year here.

Read about Tammy & Jackson now.

Learn more about the Isabella Santos Foundation

 
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