Everyone’s probably bored of me saying this, but we have a four-year-old with diabetes, and three years post-diagnosis there are still tons of challenges. Right now we’re going through a heavy all-I-want-is-carbs stage which is making me crazy, because it’s combined with a huge jump in independence, but he’s still four, and reasoning is limited.
His nurse says to limit his carb intake and offer him free foods, which I do, but he doesn’t *like/i] carb-free foods much, and I have just noticed that all his pants are suddenly too short and tight, so I suspect he’s going through a huge growth spurt, and needs the energy. I’m trying to use a lot of long-acting insulin to provide him wiggle room for all the extra snacks, but it stays in his system for more than twelve hours, and can drop his blood sugar overnight.
I’m not looking for medical advice- we have care providers and they’re fine- but I am looking for support, similar challenges, and been-there-done-it stories that mean we’ll all survive.
If you have had kids with diabetes or were a kids with Type 1, how did it go? What were the challenges? What were your successes?
I don’t have anything to add from a “been there” standpoint, but a friend was diagnosed with diabetes in 5th grade and she went every summer to a special camp for kids with diabetes and it was a huge, positive part of her life.
My oldest stepdaughter was 12 when she was diagnosed. She is now 28. And doing extremely well. She is on an insulin pump and has been for almost 15 years. THAT is a life saver!
YES, she went thru the carb phase…she also went thru the alcohol/getting drunk phase. She survived both.
I know your son is too young for that yet but find out when they think he will be old enough.
We are waiting on the pump. His endocrinologist says that the year after getting the pump is similar to the first year after diagnosis, which means lots of stress and blood sugar swings. Right now we have baby twins and a two-year old, and we don’t need any other big changes for at least a year.
Y’know, I’d take that with a grain of salt. At the very least, talk to some other parents about their experiences with the pump. I got a lot of “OMG the pump is so different! It’s a whole life change!” before I went on, but really, it’s just a different (and easier!) way of delivering insulin. If you feel confident with computerized devices, it’ll probably not be overly difficult for you to figure out.
Of course, listen to your doctor and all that, but just wanted to let you know that in my experience, at least, the docs seem to think pumps are a lot more difficult than most people find them.
What does your CDE think? Are they also saying it’s that difficult of a transition?
Sorry- don’t know that acronym. Our team at Sick Kids includes a nurse, endocrinologist, and a dietitian. All of them think the pump can be a big transition. One of my concerns about it is that he’s really physical, and forever jumping, rolling, and falling off things, and I can’t see how it would stay in without being pulled out a thousand times a day.
My daughter did Taekwondo WITH an insulin pump on and that is very physical too…yes, cannelas can be pulled out but placed correctly you can keep them safe.
As long as you have a rugged one, and teach him that it’s like a pager, he’ll do fine.
Oh, and while he has a permanent disease…I seriously don’t like the term “SICK KIDS”, he isn’t “sick”, he has a lifelong physical issue that he will have to learn to deal with.
Yeah, that’s definitely an issue, especially for a kid. But I also know there’s a lot of kids who have 'em so they must figure it out somehow.
And I’m not at all saying to go against your doctors advice. I just wanted to pass on that they told me the same thing, and in retrospect, I actually found a pump easier to manage than syringes, and I’ve talked to others - including parents talking about their T1 kids - who’ve said the same thing.
The OP is from Toronto, so I’m guessing she’s referring to the hospital her son is treated at: Toronto Sick Kids Hospital.
It’s an awesome research hospital and they give top notch treatment for kids with both short term and lifelong conditions. I was lucky that my kids never needed it but it’s been my families primary charity for years.
My niece has Type 1. She was diagnosed six years ago, when she was nine(?), and is doing well. They go through the carb stuff, but she’s doing remarkably well.
Yes, Sick Kids Hospital is what I was referring to (bad wording but right now sleep-training the twins and my brain is missing) and they’re completely fantastic and we love them. An entire hospital where all the staff are good with children- it’s such a good thing. We have a great team, and they have 24 hour on call diabetes doctors, so whenever we have any issues, day or night, we can call.
It’s funny, one of the times we were there for his quarterly clinic appointment, and got talking to another family, whom I found out were there for their two-year-old’s liver transplant, and I said I was so sorry, and they replied that they were glad it was just a transplant, and not an ongoing condition like diabetes.
