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.
Don’t blame him, blame the diabetes, It is difficult enough without being punished even more, I think you will find he will be fine after some rest and when the glucagon high has worn off he can get back to normal, but help him learn form it! I have over 30 years and still learning but one lesson he can get from this perhaps is that if we have a days hard exercise then the body continues to use more glucose than normal during the next day too so remember that for next time.
depending how bad the hypo was he may feel some bad muscle pain after the shakes and a bad headache etc but it dose go away I promise.
been there and got a cupboard full of the t shirts.
Best wishes.
Sugarboy.
Actually, it is not about blame, but to acknowledge responsibility: He knows about delayed lows. I heard from his dad that he has the headache, I will warn him about the muscle aches.
and I have a question for you: “cupboard full of t shirts”? I am not getting it.
thanks
Do you think the hypo happened because you were not there, Valerie? Wow! Hypos happen to any diabetic on insulin from time to time. Seizure is extreme but can also happen. I hope your kiddo is okay, but it might take a day to feel well. Should a 13 year old know better?? OMG, that is a lot of pressure on a kid who is not even finished growing yet. The body of a 13 year old is out of control in more ways than a broken pancreas!! Please cut the kid some slack, and realize that managing this condition is a constant chore, and for the rest of his life he will learn from mistakes and need to make adjustments when things change and I bet he already feels bad and sure doesn’t need to hear about responsibility and lack of proper effort. Even us grown up responsible diabetics have bad days. Please take care, and let your kid off the hook, it was way worse for him and his dad…I promise!
I agree with the others - your son in 13 years old and trying to live with a condition that doesn’t always play by the rules. I don’t think anyone should be blamed, but you can take this as an opportunity to learn. I know you say it isn’t about blame, but responsibility, but IMHO, if you suggest to him that his actions resulted in the seizure and that he was responsible for it at such a young age, he’s going to blame himself, and I don’t feel this is fair or productive in the long run. 
I’ve had two seizures, after both I was aching all over for the next couple of days, but it went away eventually. The other thing was that I had to keep a really close eye on my levels, and I ran a reduced basal for 24 hours after, because his liver will need to replenish it’s glucose supply.
of course I think that it happened because I was not there! and of course I realize that it might have happened with me there. Diabetes has been so easy on us over all, that we should look at this in a positive light, as a wake up call and not take good control as a given.
this reminds me of the early days, before the freedom the pump gave us and the daily chants of “we hate diabetes”.
but i have a question for you all with T1: both my kids (13 and 15) have slacked off lately with their control -forgetting to test, forgetting to bolus, etc. will there be a time when they will automatically do it, without even thinking of it, just like brushing your teeth before bed?
My son was 16 when he had his first hypo sezure/pass out. I was not w/him and the adults that were barely knew he was diabetic but called 911 quickly and they were one block litterally from the hospital at the time. My son was high before he left for where he was… and dosed empty carbs…along w/ a big correction and went on his merry way… then BOOM… and litterally it was a boom… he is 6’2 200lbs and he hit his head hard on the way down and tore up his knee. They were told NOT to give him any sugar… and there was no glucogon around … by the time the ambulance got him he was 67… and coming around… his liver gave him a burst of glucogon… and by the time I got to the ER he was in the 80’s still…w/no sugar or iv.
I did not blame him… he blamed himself enough… he forgot to even bring his meter/pdm with him cuz he was only gonna be gone an hr… and was “high” so he thought he would be fine. This was over a year ago now… and believe me…he has learned by it all. The best we can do is teach them all we know… be their partners in it all … .let them know we are there for them and they aren’t alone…and…learn from each new experience. And… hope there are no new ones…but there will be… inevitably. ( Oh. .his endo at the time took away his pump for awhile and had him go MDI… was a horrible thing to do…and we ended up changing endos over this issue) At 17… my son now drives. YES… DRIVES… wait till that one hits! So far… he is being very responisble about this. If I find that he isn’t… I will take the keys away from him though… in this case and he knows that. Oh… and even w/out Glucogon… he took about a week to feel “normal” again…but he did have a concussion.
It just seems like a universal truth as kids grow into teenagers, they will exert their independence, want to be adults and make their own decisions, but they don’t always use the best judgement. And it will drive you crazy. They will take over being responsible for all this stuff and they probably won’t do as good a job as you would do. And they will make some mistakes and those mistakes will play a role in them learning. I know that you love your kids dearly and you want to prevent anything bad from happening to them. If you followed your kids around everywhere so that this sort of thing never happens, then they would never learn to take care of themselves. It is just a difficult balance.
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.
My niece… because she has a tubed pump that she can dose w/out using the meter… has gotten in to a habit of “blind” bolusing her food with using just the pump to dose. She is in her first year of college and has been diagnosed for about 3 years… so… not sure… but that might be something you have to watch for as they get older.
You have 2 teens w/ t1?? That must create whole new issuses that can be hard. Did they both get diagnosed around the same time. I have 2 sons… one 17 w/T1 and the other 14 w/out. I worry that he might get it too. My sister has family on her husband’s side where their girl got it at age 4 and her older brother got it at age 30!
the youngest was attacked by T1 first when he was 6, came out of nowhere as nobody has it in our family, i had no idea what diabetes was (kind of) and I diagnosed our oldest at age 11, two years later. but as I wrote earlier, diabetes has been “kind” to us, this is the first major issue, but for the 2 DKAs, but seizures are so much scarier than dka.
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.
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.
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.
Yes, I agree with all of it, and I guess the problem is not them, it’s me, freaking out: college for both of them is not far off: how do I let them fly on their own without going crazy with worry? I am doing a pretty good job at letting them be in charge (really I do), but then this s…t happens. you all have convinced me that nobody is to be held responsible, really; but apart the CGM, what kind of safeguard can they find to stay alive? this is not really a question, but rather a non diabetic mom expressing her anguish.
Having gone through a couple bad ER-trip-via-ambulance hypos in the past 30 years, my attitudes. I know they aren’t the attitudes of a mom… but they are attitudes of a T1.
Before the first one I was sure a bad hypo like that would kill me. Just like when I was in the start of the Sierra Madre earthquake (my first one) I was sure I was going to die in it. But you know what? I didn’t die from either of them. And yeah, I had a later bad hypo… and I was a couple years later in the Northridge Earthquake. And I survived both of them too.
If there’s anything to learn from your son’s recent experience… it’s that we are resilient, that not every bad hypo means the end. At some point I’m hoping you’ll be able to use the experience not to result in fear… but in confidence that there is a path (maybe rocky!) that can be traversed ahead.
And one a little more immediate point: glucagon induces super-duper nausea in me. I’m told that’s the exception rather than the rule but wow, it was a doozy. I’m glad it helped me out of the hypo but… it took me a good 12 to 18 hours before the nausea had really worn off to the point where I could feel like I wanted to eat anything.
Well first of all dealing with the seizure and the aftermath varies from person to person, but don’t be surprised if he is very tired as a result of the seizure and needs a few days to rest and recover. Again he might bounce right back. One just never knows. I would just play it by ear and see how he feels and then go from there. If he feels really tired, definitely let him stay home and rest till he gets his strength back up. Seizures are very scary. I know because my Nephew has a life threatening seizure disorder and so I speak from experience. I know how terrified you must have felt.
I think the thing is to let your child get back to his or her normal routine as fast as possible. The thing with teens is they think they are invincible and with a great majority all common sense goes right out the door. They want to so much be like their peers they will forego taking care of their diabetes just to have the feel of “fitting in” One good website that you might want to visit is Children with Diabetes
It is a fantastic place and there are other parents of teens there and they can really give you some feedback regarding teens and diabetes. Also here is a link to a wonderful video that I think may be worthwhile watching. The link to the video is within the first part of the thread. Children with Diabetes Video
I have met the speaker and he speaks from years of experience. I am going to attend a Chidlren with Diabetes Coference this November. They are fabulous and I learn so much. I wish you the very best.