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BRE

Wed, 07/30/2008 - 01:33
My 9-year-old son was diagnosed with BRE last week. He started having twitches in his face 4 months ago and only happend while he was just waking up but still groggy and tired. Last week he had a full grand mal seizure that started with the twitching in his face but spread full body. We had an EEG done on him and were told it came back abnormal and that he had BRE. We are not able to see a pediatrician neurologist until 2 months from now. Anyhow, I am told that these usually occur during sleep or upon awakening. I have not had a good nights sleep since last week. I just lay awake all night and watch him. I sleep on and off all night and at every twitch I am scared. How does anyone else cope with this and do they get much sleep or any suggestions as to what anyone else does for peace of mind during the night???  rayray's mom

Comments

Re: BRE

Submitted by wyboemail on Thu, 2008-07-31 - 13:11
We had just gotten our son out of our bed and that same week he has his first seizure. I think stress (being in his own bed scary) and being over tired has a huge part of seizure activity. He always was scared to sleep alone and he told us after the first seizure that he would always get these tingling in his lips after he fell asleep and this time it did not go a way and he felt funny so he tried to get to our bedroom and then fell in the hallway and started to have the seizure where we found him.

Re: BRE

Submitted by wyboemail on Thu, 2008-07-31 - 13:04

Keppra has controlled his seziures very well. He is on a very low dose of 250 mg in the am and 500 mg in the pm. He was taking 250 mg in the pm as well but started having seizures again so the Dr. figured with his growing the 250 mg at night was not going to be enough. Everything has been fine since. We give him coromega fish oil along with other supplements that I thinks helps as well with the seizure control and the side effects of the keppra.

wyboemail@yahoo.com

curt

Keppra has controlled his seziures very well. He is on a very low dose of 250 mg in the am and 500 mg in the pm. He was taking 250 mg in the pm as well but started having seizures again so the Dr. figured with his growing the 250 mg at night was not going to be enough. Everything has been fine since. We give him coromega fish oil along with other supplements that I thinks helps as well with the seizure control and the side effects of the keppra.

wyboemail@yahoo.com

curt

My son too

Submitted by jacob829 on Wed, 2008-07-30 - 16:19
Hello my son was diagnosed with BRE right before Christmas and we had the option of putting him on medication. His father and I decided to wait it out to see how often they happen. Well he had 2 more in a span of 4 months, I seem to be the one who always witnesses it (father and I do not live in the same home). My son's seizures always happen within the first hour of sleep. My son happens to fall asleep most nights on the couch where I am so that is how I became aware of it. In fact I thought he was just dreaming until I noticed the drool and slurring words, that is when we had an EEG and got the diagnosis. He is on Keppra up to 250 ml twice a day but I don't think this the right dose because the other night he had a grand mal and that scared me to death, I reamained calm and made sure he was safe. I called the Dr.. of course he is on vacation, but we have a follow up next week. I just don't want my son to ever have to have another one in his life, the gasping for breathe is what gets to me. I want to know what may trigger it, tired, sleep schedule off, food? or is it just nature and the make up of my son?? Glad to hear that I am not alone.. thanks for your support my email is aclayton@gloucester.k12.ma.us if you want to chat. Amy

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