Discussing T1D Complications with Children

Just curious, at what age did you start talking to your T1D child about potential complications (hypo and hyperglycemia, DKA, etc.)? How do you start the conversation and how do you keep it age-appropriate?

My daughter is 6 and often hypo-unaware. Sometimes, when I give her something for a low, such as a roll of Smarties, she will take her time eating them. I need her to understand how important it is to treat a low quickly, but I don't want to scare her.

It’s a tricky question and the answer is going to depend on your child. My daughter was diagnosed when she was five. While I didn’t have serious discussions with her about complications then I’ve always made it very clear that taking care of her diabetes was the #1 priority.As a parent our first instinct is to protect our children from everything, including things that might scare them. Personally, in the case of diabetes, I think this is a disservice. Diabetes can be a life threatening condition and children who have to deal with it every day need to know that, not only for their safety but also so they can educate those around them.

So, to answer to your question: I started right after she was diagnosed. I explained to her that her pancreas was broken and that we had to take over it’s job. That made her feel important, at least at first. I told her that a low blood sugar was an emergency-that it was like a car running out of gas on hill. If we didn’t get some gas in it, it would roll back down the hill and crash into a tree. The sugar we used to treat her lows was the gas and she needed to “fill up” fast. That worked well when she was young. As she got older I began to explain the complications with more detail. She’s 16 now and aside from normal teenage “I don’t want to do this anymore” she hasn’t had any complications.

I’ve always been very open with my kids about their diabetes, including the complications. I think it’s more scary not to know. There will come a time when I’m not around to help them and I want them to be strong advocates for themselves. Having said that, you need to find what works the best for you and your child. Just like everything with diabetes, no two people have the same experience. Whatever approach you take needs to work for both of you. Good luck!

Thank you for the feedback - and what a great analogy!

My son is almost 8, and we have been quite up front with him about some stuff. He was only 18 months old when diagnosed so I couldn't very well do what seichel did, but what I have done is taken our collective experiences and used them to teach him. I've had to use glucagon on him a couple of times (not recently, but of course he remembers it vividly) so he understands why going very low is dangerous — which helps in terms of getting him to eat his smarties or drink his juice when he's not excited about it. And, while he is hypo-unaware sometimes, there have been a few lows that came on rapidly that left him feeling woozy and drained, so he does understand why it's bad from that perspective.

Where we have trouble is explaining to him why it's not OK to have very high BGs. I didn't want to get started on the long-term complications of diabetes until he was older, but then his father was Dx'd with T2 (and already has blood pressure and cholesterol issues) so we've started to have that conversation. Emphasizing, of course, that the bad stuff of hyperglycemia happens when people's blood sugar is too high for too long, and explaining that being sure to practice good self-care, use insulin with every meal and to get plenty of exercise is how those things can be prevented.

We had a trip to the hospital last summer when his pump failed 2 hours away from home and I hadn't brought any backup insulin with me, which was instructive to him both in terms of (1) the need to carry supplies with you EVERYWHERE and (2) the kind of stuff that you face coming to an ER with very high blood sugar. [We had to reluctantly acquiesce to a blood draw because they couldn't really treat him without it, but I had to put my foot down against them giving him an IV to deal with his "mild dehydration" because, as I pointed out to the earnest but perhaps not overly experienced PA, there was absolutely no reason not to rehydrate orally in a conscious, acquiescent patient. Grrrr.] The "time we went to the hospital" is the starting point to get him to accept, for example, I need to give him a shot he doesn't want when he's at 350 because his pump site pulled out 3 hours earlier. There are, after all, consequences to not taking care of diabetes issues promptly, and for him, the consequence of not managing a high blood sugar with an injection is best summed up in that disastrous hospital visit. So really, I'm making a practice of using the knowledge and experience he's had to identify reasons for good self care. I don't want him to spend a lot of time worrying about complications that we can hopefully prevent...

Well said. I have only had to use glucagon twice (in 3 days, no less) in 3 years now, and I'm not sure she even remembers it. Plus, I drew it up in a regular insulin syringe, so it wasn't as traumatic as the one that comes in the kit.

While she has had a couple of mild stomach bugs, we have managed them at home and avoided said dreaded trip to the hospital - so far. But after hearing about that kid in college who died last month of dehydration/DKA due to the stomach flu, I may just go straight to the hospital next time. In general, so far, we have just mentioned needing to go to the hospital if we don't treat for whatever situation she is resisting.

Thanks for the very good input Elizabeth. (which happens to be my daughter's name!)

you sound marvellous! What a lovely way of teaching your children.