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nocturnal epilepsey only need advice anyone else have this ?
Thu, 01/26/2006 - 14:26my daughter has seizurs at night when she sleeps and if she falls asleep during the day . this happens every night about one hour after she goes to sleep and throughout the night averaging 12 to 15 per night she has been on almost all medication but nothing seems to work she does not have any in the day.
does anyone else have or know anyone else with this type of epilepsey?
Comments
Re: Re: nocturnal epilepsey only need advice anyone els
Submitted by benji on Wed, 2006-02-01 - 13:30
my sympathy and thought are with you the only one of those medicatsationsemy daughter has not been on is depakote at presant she takes clonazapan which acts like a sedative but does not control the sz it just does not make her so aware of them. she also takes tegretol retard which does not do anything. but the doctor seems reluctant to take her off of them this has been going on for seventeen years my daughter also has severe learning difficulties. and i wonder if the sz will ever stop
Re: Re: Re: nocturnal epilepsey only need advice anyone
Submitted by Jake Reed on Wed, 2006-02-01 - 15:23
Has your doctor tried Diastat, or rectal Diazepam (Valium)? I know this is an emergency medicine, but for some reason it seams to work for my son (for about 2 days). The doctors try to minimize the use of this because of it's dependency.
The only other thing I have been recommended it the Ketogenic diet. Our familty has not gone this route yet, but we have tried the adkins diet to get him in a ketogenic state. In the ketogenic state, he was still having sezures, and he was not enjoying his food.
I know what you mean when you say the Dr. do not want to take them off other medications. We had to fight a bit with our Dr. My son had such bad side effects he didn't remember how to put his pants on. and couldn't find our kitchen.
The harder it gets, the more I have to love him.
Jake Reed
Re: nocturnal epilepsey only need advice anyone else ha
Submitted by Jake Reed on Wed, 2006-02-01 - 12:09
My son, Justin, has recently been diagnosed with epilepsy. He started having night seizures about 8 months ago. Most likely times for him are about a half hour after going to bed and an hour before he gets up (sometimes 10 a night). There is not a lot of information on this type of epilepsy, so my wife and I are looking into this ourselves. We have been informed about Diastat, or rectal Diazepam (Valium), that seems to knock it out of him for a few days (when clustering). We are looking more into sedative route than the conventional seizure medicines. My son has been on Phenobarbital (allergic), Zonegran, Lamictal, Klonopin, Depakote, and Topamax. Keep searching for answers! My prayers are with you! It hurt to see your loved ones go though this. Jake Reed