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Weaning off phenobarbital
Fri, 03/11/2005 - 11:35Hello,
My daughter is 3 years old & she has been on phenobarb since she was 11 months old. She has had break through seizure clusters during that time, the last one in January. She has just been evaluated by the city & has developmental delays. Her speech, coordination, and listening skills are behind where they should be. We don't know if it's her or the medication. We are now weaning her off gradually with a plan from her neuro. My husband really wants to see if her problems straighten out, while I'm terrified of something going wrong. The doctor has instructed to start Keppra if her seizures warrant. My daughter is a happy, loving, energetic child and I worry about what a new medication would do to her. Does anyone have any advice about going through this process? Are there any other precautions I should be taking? I'm most worried about during the night when I can't keep constant watch over her.
Thanks,
Kristen
RE: Weaning off phenobarbital
Submitted by angel_lts on Fri, 2005-03-11 - 07:29
Phenobarbital is a horrible drug. I have been on it for 30 years. I have been trying to ween off of it for a year in a half. I started with 60mg. It is tooking that long to do it. When I took a small dose away and then two months later a little more, I went into a grand mal. I had to add that small amount back again. I had pushed my doctor to go faster but it did not work. When that happened, I had to wait a whole year to start again. The following year I started again and that took a year. We did 15 mg at a time. Every four months. My last 15 mg, At the end, I cut 15mg in half and then 7mg. I have just gotten off of it completely just a week ago. After you get past the first two weeks, usually you are good to go. Just remember each time you do this. Make sure she is not sick or any other issues at the time.Best of luckhttp://health.groups.yahoo.com/group/EpilepsyApproach/Lisa