7 years since diagnostic and the first seizure happened this morning and of course I am not there. my 13 years is at the beach with his dad, who did all the correct things, glucagon and emergency room, but what is next?
to those of you with t1, or parents of t1 kids: what happens next? is he going to feel lousy? how long? are there long term effects?
Yes I could call our endo, but I know it will be faster to read all your replies.
and yes, I am going to have a CGM slapped on his belly faster than he can count to three! which leads to another discussion: Should a 13 years old KNOW better AND be held responsible for going to bed after a whole day at the beach with a scant minus 20% on his basal when he absolutely knows that he is subject to serious delayed lows after exercise?
thank you for reading; this is one of those days when I am hit really hard with the reality of T1.

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I knew I would find the best support here; thank you all for the replies.
I am sure all the parents of T1 kids have felt at the time of diagnostic, that they would gladly swap pancreas with their kids, but in a way, there is a part of me who knows that I will never understand what it feels to have diabetes and I will never understand completely my children's experiences; that IS difficult.
Yeah, but Valerie, the opposite is true too -- they will never understand yours, either. My son was Dx'd before he could even talk -- and now, at age 4, he knows words like "insulin" and "diabetes" and "blood sugar" which are foreign to other kids his age. Part of the frustration of parenting a T1 child is that if we do our jobs well, our child learns to live with T1, for better or worse, as a day-to-day normality, but we will forever to be outside looking in even as we're managing it (and certainly once we stop managing it). We have to be on call 24/7 and yet no matter how good we get at doing the job, we have to find a way to relinquish the reins to them -- knowing that they're going to screw up, and scared about what the consequences might be of them screwing up, but also knowing that they HAVE to have the ability to be in charge because face it, we're not going to be around forever. We can't keep them in a box, and that is part of the frustration. And our children will never understand how we feel, just as we will never really know how they feel. They will never know the level of anxiety you felt when they were diagnosed (and probably still feel). They don't know about the nights you lie awake trying to figure out where their blood glucose levels are going next. They don't have the same sense of loss you have that one minute, your baby was a normal healthy kid, and the next, he's in the PICU. So... well, s***, I don't know if any of that helps, but maybe it lets you know that you're far, FAR from alone in this!
Elizabeth, yes, thank you. but one day they will have kids and will know the anguish, for one thing or another. Still, I agree with totally
I hope to heaven they don't know THIS anguish. T1 diabetes is like adding a habanero pepper to the usual salsa of parental anguish.
at the rate diabetes is spreading, I would not be surprised if my grandkids end up with it
Mmm... well, that's a worry best left on the shelf. About all we can do is eat well, sleep well, and hope that living reasonably healthy lifestyles will overcome the inflammatory factors and genetic miscues that brought us to this pass.
I am sorry Elizabeth, but healthy lifestyle does not protect anybody from Type 1 diabetes. I must say I am surprised that i have to write this statement on this website.
Wow, so sorry to hear that your son and your family have gone through this. It is so tough on our kids with type I and also on us Mom's. We worry and we blame our selves (at least I know I do). I will send up a prayer for your types I's and all type I's that God watches out for them.
I have had a number of hypoglycemic seizures over the years and don't usually feel all that bad afterwards, maybe a bit "hung over", particularly from the IV Dextrose and/ or glucagon. I'd gone for a while without one but then have had one in each of the last two years. I have been exercising a lot since 2007 without problems until recently. I can explain both of the events away as mistakes. I still don't feel that great about it and, of course, I'm sure that they were horribly alarming for the bystanders (both at family events!) but perhaps there's some useful data obtained therein. The hard part about the more recent events was fighting off the doctor from "have this sandwich, chips, cookies AND this quart of orange juice" and then her complete disdain when I say "no thanks, a swig of OJ and the chips will be fine.". Whatever. I should have haggled with their billing department "this is no more than a level two visit, she didn't do %$^! %^&*%$#@#$%^" but I didn't.
I agree with the others, it is not really anyone’s fault. If I read your post correctly, he did cut back his basal 20%. That to me says that he realized he would need less insulin. One big problem with diabetes is that you can do the same thing 10 different times and get 10 different results. Maybe in theory, he should have stayed up all night but that is hard to do. Even when you are awake, some of those post exercise lows happen fast. I didn’t pass out or have a seizure, but back in my NPH and Regular days, I got up with a normal BS, took my insulin and ate breakfast. I was sitting at the table drinking my coffee and felt weird. I was 17 or 18. It actually happened 2 days in a row and I was 17 one day and 18 on another. I had started exercising again and my doctor said the exercise was the cause. They happened about 15 hours after I exercised.

I know it is hard for you to find a balance. You need to let him be a kid but you also have to protect him and worry about his health. If you stop and think about it though, he is probably more responsible than most of the other kids his age just because of all the stuff he has to do with diabetes.

I think we all go thru stages. There is a book called Diabetes Burnout. I am sure that book was written for a reason.

One of the Diabetes Advocates, Barb, has a blog that she talks about her teenage son. She has some of the same fears that you do. You should check out her blog.

I will check it out, thanks.
and also thank you for being an advocate for my son (all of you). I am at this very moment, getting off my high horse and will give both my kids credits for the amazing job they both do.
No, a 13 year-old should not know better. I am a 32 year-old with T1D and I don't always "know" better. T1D is tricky because what works on one day won't necessarily work on another. He may have been considering other factors when he "just" decreased his basal by 20% (such as something he ate before he went to bed or something he ate earlier in the day). T1D is a whole lot of guesswork, guessing that is hard enough for an adult, let alone a young teenager. Actually, a 20% basal decrease is what I often do, and I'm subject to lows after intense exercising/activity as well. If you decrease the basal too much, you wake up high and that's no fun either.

I've had a few hypo seizures over the years and they are not fun. Trust me, the experience will stay with him forever. Afterwards, I generally had a BAD headache and felt pretty naueseous. The nausea went away quickly but the headache stayed for a couple of days. Also, my BGs were very wacky afterwards, bouncing all over the place. It takes a few days for them to settle back in.

Regarding the other question you raise about whether your kids will ever "automatically" do these things: The teen year with T1D are rough. The surge of hormones that makes most teens just feel moody wreak havoc on blood sugars. I became very insulin resistant as a teen and it was tough because everything that worked before no longer worked. In addition, at that age, kids are very self-concious about being different from their peers. It's hard when none of your peers are testing their BG, bolusing, or walking around with a little box connected to them via a tube. Sometimes, I would know what to do, but didn't do it because I didn't want to be different.

People with T1D always go through periods where they slack off with control. I've done it many, many times. It's called burnout. You just get tired of the day-to-day BS/crap that you have to do because of D. It has never really been automatic for me, and it never gets easier. If you want to help them, acknowledge that D is a big ol' pain in the arse. Let them know that you understand as much as you can that sometimes it's just all too much. But also remind them that their future health and life depends on doing these things. They are lucky they have one another, but see if you can connect them with other t1D kids/teens in your area.

The one thing I can tell you is that once you have a bad experience like the one your son has had, it will stick with you and affect how you do things going forward. The things I'm generally pretty good at now (adjusting for exercise, making sure I have my supplies with me, etc) are the result of really BAD/SCARY experiences I've had previously. Sometimes you need something bad to happen to kick you in the butt.

Re: the CGM, yes, probably a good idea, but they are not 100 percent accurate and you DO NOT want your son relying on a CGM for BG readings. Personally, a CGM made me lazier because I would just go with whatever the receiver said, which was usually pretty far off from what my BG actually was in some cases. I stopped using it for a variety of reasons, that being one of them. If you think your son might replace finger pricking with a CGM, be cautious.




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