Hi Stacey,
My son Jonathon is 13 and has had diabetes for 5-1/2 years, and epilepsy for 5 years. He started with the head twitching when he was low, and then one morning woke up low and had a seizure. From that point, he continued to have seizures about every 1-1/2 to 2 weeks. We saw a neurologist who was not convinced that his seizures were not related to blood sugar. However, we WERE sure that the later seizues had nothing to do with his diabetes. We found another neurologist who started Jonathon on zonegran, which caused hypoglycemia and almost killed him (after we questioned the neurologist, pharmacist, and 2 ER doctors about the possibility of the medicine affecting his diabetes). If we hadn't realized something was seriously wrong and checked his blood sugar every 1-1/2 hours all night long, he would have died in his sleep. We were not happy with that neurologist for a variety of reasons, and finally found a pediatric neurologist who put Jonathon on Keppra. Jonathon has now been seizure free for 3-1/2 years, and off Keppra for 1-1/2 years. He does take magnesium daily, as his neurologist found his magnesium levels were low, and that could contribute to having seizures.
Jonathon uses a pump and a continuous glucose monitor, so we catch most of his lows before they get into a danger zone. We haven't had even head twitching since he quit taking the Keppra. We've had a lot of trouble keeping Jonathon's blood glucose in range due to those crazy surging hormones. We have recently changed insulin and are getting better results now.
I'll be glad to share our experiences with you--ask anything you'd like!
Dawn
--- In epilepsy@yahoogroups.com, "staceymoonlight@..." <staceymoonlight@...> wrote:
>
> I'm very confused and so would LOVE to find someone else whose child has both diabetes and epilepsy.........AND crazy surging hormones. LOL
>
> Regards
> Stacey
>
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