my 12 year old son was diagnosed 3 years ago. During his first year he had 3 night time seizures which we believe were directly related to hypoglycemia. However in the past few months he has had over 12 seizures, all at night. We have been in the hospital twice and are seeing a neurologist and endo. At first both doctors believed these seizures were due to low BG. After an EEG he was put on anti-seizure meds because abnormalities were found on the left side of his brain. His blood sugar drops rapidly and unexplainably prior to these seizures. He has had some of these seizures when he has been unplugged from the pump and has not administered any insulin for over 6 hours. WE are at a total loss. Has anyone experience anything like this???
I can say that I have the same problem and it has been due to low bs. But I started that after 20 years of having Type 1. I'm on Dialation for my seizers now. I don't know what to tell you other than that. Yes I've had them without the pump being in. Do you know how much insulin he took before disconnecting the pump. Maybe he's got to higher basil rate there. I won't say what to do there b/c I had to just learn to watch myself about that. I also had eplopsy in my family and it took awhile to catch what exactly it was.
Have you tested his blood sugar just before/during/immediately after one of his seizures? If not, then it is very important that you do so. If he always gets low BG while sleeping, then ask him to let you test him every two hours (while still in bed) especially around the time that he has often gotten seizures, and do it for several nights. I know that I will have a seizure if I let my BG get less than 35 or so. I do not have any family history of seizures - that is just the way my body deals with extremely low BG.
It is normal for a bolus of insulin to take several hours (usually four but sometimes more depending on the insulin type used) before fully activated, so having a seizure hours after last bolus is not necessarily a sign that there is something else happening. If he always uses a pump and never injects any insulin, then carefully look at all the insulin pumped that day and night that he goes low to see if you can understand why. Also consider the food intake and exercise expenditure that day and the day before.
My advice would be to TEST MUCH MORE OFTEN until you see a pattern in his BG. Assume it is because of too much insulin, unless proven otherwise - but you can only prove it by testing a lot.
Based on comments here, it seems that some people are more prone to have seizures when BG goes low - others pass out. Personally I think seizure is far better than passing out, since he's more likely to get the help he needs - either from waking himself up or from others (i.e. you his parents) hearing him. So unless his BG is normal when he is having seizures, I think it would be a mistake to take a drug to prevent them; others may disagree.
The most likely cause is that he is getting too much insulin. Maybe he is taking too much because he eats erratically, and needs the extra insulin on days with lots of carb intake but then has problems on the days he eats less. Or maybe it is hormones which may be starting to kick in at his age and which make managing BG more difficult. If you carefully monitor insulin, diet and exercise for a few weeks or less you'll likely find the problem.
Good luck.
p.s. I've had Type 1 for 35 years, and will still get seizures if I let my BG get too low. I try very hard to prevent it from happening, and have been doing well, but all it takes is one badly mis-judged injection combined with a lack of testing. That is unfortunately the tight-rope that all Type 1 diabetics walk.
Sorry, I left out one very important piece of advice - to try a CGM which will allow a very close watch on BG's and is even better than testing every couple hours. Given his history of seizures his Dr. should have no trouble getting you one. If you don't want to purchase one, your Dr. should be able to provide one on loan to help figure this out - the CGM companies are happy to provide loaners if asked (always looking for new potential business).
Second the CGM suggestion. Your son is a prime candidate. People rave about Dexcom 7 as the most accurate. Just as a precaution, I'd check his pump carefully to be sure it's delivering correctly, or request a new one. Large doses are absorbed at a different rate, if he accidentally got too much before being disconnected.
I was diagnosed at 12. It was back in the Regular / NPH days, but I had seizures frequently for seemingly no reason for 2 1/2 or 3 years. The doctors finally told me it was because I was allergic to Nutrasweet, which is silly, but it was pretty new at the time, and I ate something with that once or twice a day. They never really found a reason. It may have even been because I may have still been in the honeymoon phase. If I was making extra insulin and it kicked in at night, that would have been enough to cause it. That is where a CGMS could help either confirm or disprove that theory.
Disclaimer.......I have no medical training, only opinion. = )
I see the A1c you have listed is 11. If that is current, that is an average bg of 314 mg/dl or 17.5 mmol/l. It is possible your son's electrolytes are out of whack from dehydration. I have read that heart attacks can occur to healthy people with really low electrolytes, because it causes problems with the electrical currents in our body. I have also read that electrolyte imbalances are related to seizures. I am not sure which one causes which. Make sure an electrolyte imbalance has been considered as the cause.
I am so sorry you and your son had to experience this. I would immediately get a cgms (highly recommend Dexcom 7 Plus) and a baby monitor so I can hear the alarms clearly. That should help manage him better at night so that he does not have untreated low blood sugars. Seizures non-D related, after the second seizure a nuerologist should prescribe medication and hopefully the proper dose will eliminate future seizures. Very scary; I hope the neurologist can help get your son back on track quickly.
Thank you for your words. He has been on a CGM before but the alarm is never loud enough for us to hear!!!! He has dropped from 186 to 27 in 15 minutes when using the CGM!
I didn't notice the very high A1c. Strange as this may sound, I think it is even *more* likely that your son is receiving too much insulin. This is not the way most Doctors think - they see the high average BG and assume he is not receiving enough insulin and up the insulin amount. But in my personal experience, THAT COULD BE WRONG.
In my experience, having high BG causes insulin resistance, which requires substantially more insulin, in an ever increasing cycle. This is mentioned in the "Type 1 Diabetes" by Hanas, which I highly recommend you purchase. It is the only book I've seen that is specifically targeted at young Type 1 diabetics so your son may enjoy reading it too. Insulin resistance is typically attributed to being overweight (which tends to happen when we get older), but repeatedly hitting high BG's can cause it also. When his body is finally able to get past the insulin resistance it happens quickly and dramatically and his body is suddenly insulin sensitive, so the same amount of insulin that he took the day before is now WAY TOO MUCH, and his blood sugar crashes causing the super low BG's and seizures you are seeing.
Let me make this clear - if he is getting BG of 27 as you said, then his seizures are to be expected and you SHOULD NOT ignore his seizures or treat them as him simply being seizure prone. Why do the doctors have him on seizure medication if they know he is getting BG of 27??? His body is having seizures because he is being over medicated - he is getting too much insulin.
He needs to get out of the super high BG cycle, so that his body is no longer insulin resistant. At that point his BG will be MUCH more predictable. Until I did this, I could make absolutely no sense of carb counting since the exact same food would require vastly different amounts of insulin on different days. And the wildly different insulin needs were because my insulin sensitivity (insulin resistance) varied by so much because I was taking too much insulin.
I would start by looking at his total daily dose (TDD) of insulin, and comparing it to what is expected for his age and weight. When I did that a year ago I found that I was taking much more insulin than I was supposed to need - i.e. I was insulin resistant. And yet I wasn't overweight so the insulin resistance wasn't caused by that, so I finally tracked it down to taking too much insulin. When I did that my insulin requirement went down, my A1c went down, my low BG (and occasional seizures) went down, and carb counting was now possible.
Hopefully your son's doctor can help you with this. And feel free to ask for advice.
Ask your dr for a Gluagon Kit. I use one and always have one on hand for when I start falling and then start seizing. It is in a red box and it had a needle filled with fluid and a small vile of more or less sugar in it. When he falls to where he can't swollow and is VERY low give him a shot of that (you take the syrings with the fluid in it inject it into the vile then pull it all up and then that the syringe and give him a shot of the mixed contents in the vile) For me this has worked within 15 minutes and I come back to me. Just a suggestion but any Type 1 I think needs to have this around them. If you've ever passed out and don't remember what happened and how they either had paramedics working on them or have woke up in the ER IT'S JUST PLAIN SCARY! Everytime I do it I get scared. A paramedic suggested to me I get one years ago so I ALWAYS have one on hand.
Thank you so very much....I think you are right...He spent the summer In NY and was consistently over 350. It was when he returned in September that all of this madness started to happen. Crazy.
We always have it around. That is another mystery: sometimes my son does not respond to glucagon. Meaning we give him the shot his BG goes up a little then drops again. We have given him two glucagon shots during one seizure, plus food once he was alert and his BG still took a long time to go up to a healthy number.
I had that happen last week to me. 2 gluagon shots one right after the other within a 20 minute time period and I woke up with a 44 the next morning. My husband went out to Burger King (about 15 minets from us) and got me something to eat and a coke but like 5 minutes later he found me with a coke straw almost 1/2 way down my throat and seizing again sooooo I got the 2nd shot. I really don't know anything other than what I've already told youi. And I would say to talk it over with his dr. I don't want to try and diagnose any thing here. Just thinking of what had (or hadn't) worked for me.
This should not be a mystery to your doctor. Glucagon works by stimulating your liver to create glucose from its stored glycogen. This *does not work* if your liver is already depleted of glycogen. So if a diabetic has had a low BG that caused his liver to empty its glycogen, and he tries to inject glucagon to do it again before his liver has had a chance to rebuild its glycogen store, then the glucagon will not work the second time. If your doctor does not know this, then try to find a specialist who does.
Getting a second BG low enough so that all liver glycogen is already depleted is a significant sign that his insulin is way out of balance, and it isn't happening only occasionally.
You REALLY need to get a competent team to look at his insulin intake. He is absolutely taking too much insulin. The only question is whether he is doing it only occasionally, or all the time.
And please re-read the previous posts I wrote to you. I have the feeling that you're not understanding them. This isn't mysterious - it makes perfect sense and can be solved.
