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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 Wed, 2008-07-30 - 14:30

My 10 year old son sleeps in bewteen my wife and I since he was diagnosed. It will be two years next March that he had his first seizure. We found him at 10:30 pm laying in the hallway just outside his bedroom. When he came to and was able to talk again he told us he thought he was dieing. He said he could hear and see us but could not talk. That tore me up inside to know he thought that. We are getting a air mattress for him so he can move out of our bed. He is very well controlled with his meds but I still cannot let him sleep without us being close by. We give him coromega fish oil, aloe vera juice, magnesium, and vitamin b complex. He is on a very low does of keppra. 250 mg in am and 500 mg in pm.

My email is wyboemail@yahoo.com if you have any questions.

Curt

My 10 year old son sleeps in bewteen my wife and I since he was diagnosed. It will be two years next March that he had his first seizure. We found him at 10:30 pm laying in the hallway just outside his bedroom. When he came to and was able to talk again he told us he thought he was dieing. He said he could hear and see us but could not talk. That tore me up inside to know he thought that. We are getting a air mattress for him so he can move out of our bed. He is very well controlled with his meds but I still cannot let him sleep without us being close by. We give him coromega fish oil, aloe vera juice, magnesium, and vitamin b complex. He is on a very low does of keppra. 250 mg in am and 500 mg in pm.

My email is wyboemail@yahoo.com if you have any questions.

Curt

Re: BRE

Submitted by rayraysmom on Wed, 2008-07-30 - 22:47
My husband and I have had our son in between us,too, for the last week.  I am scared to let him sleep by himself. I think he is scared,too. I am sure it will be a looong time before he sleeps alone. I would feel awful if something happened during the night and I was not able to catch it. Does the medication your son is on work for him? I mean, has he had very many seizures since he has been on meds?

BRE

Submitted by jacob829 on Thu, 2008-07-31 - 07:41
My son started medication just over 2 months ago, and is on Keppra and was taking liquid 300 ml twice a day, but the liquid wasn't convienent for us so we changed to pill but they only come in 250 ml, he started taking them last week and since then he has had one big seizure and a quick small one that I know of. Like I said, he has them within an hour of sleeping and so i make sure that I am with him while he goes to sleep. Funny because I just got him out of my bed and now he has been back in my bed because this. I am going to get a baby monitor to have in his room, I sleep very light and hear everything. So I have an appointment next week and I think he will change his medication or dosage. My question is for the person whose child went to the emergency room, did they do any testing to see if he had BRE or did they talk to a neurologist and he prescribed a perscription? Has your child had another seizure since then? For everyone else is there any rhyme or reason to your child's seizures are you seeing any patterns that may trigger them? tired, stess etc...?? I am just trying to figure out a possible trigger. Thanks for your input and sharing your stories, this has been very comforting to me knowing my concerns aren't all in my head and that i am not alone. Amy

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