Minisode #8: When A Child With T1D is Afraid to Get Back in the Game

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.

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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

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Transcribed by https://otter.ai