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Weaning off phenobarbital

Fri, 03/11/2005 - 11:35

Hello,

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

Comments

RE: Weaning off phenobarbital

Submitted by jennamay on Wed, 2005-03-09 - 12:43

Hi Kristen,

Your concerns about nighttime seizures are normal. There are several things you can do to monitor your daughter's seizure activity at night including using a baby monitor as well as a seizure monitor and anti-suffocation pillow. Here is a link to one mother's story: http://www.epilepsy.com/articles/ar_1109600956.html.

Also here is information regarding Keppra:

http://www.epilepsy.com/epilepsy/medicine_kids.html

http://www.epilepsy.com/medications/b_keppra_children.html

http://www.epilepsy.com/medications/b_keppra_side.html

http://www.epilepsy.com/medications/b_keppra_work.html

 

Best Wishes,

Epilepsy.com Editor

 

Hi Kristen,

Your concerns about nighttime seizures are normal. There are several things you can do to monitor your daughter's seizure activity at night including using a baby monitor as well as a seizure monitor and anti-suffocation pillow. Here is a link to one mother's story: http://www.epilepsy.com/articles/ar_1109600956.html.

Also here is information regarding Keppra:

http://www.epilepsy.com/epilepsy/medicine_kids.html

http://www.epilepsy.com/medications/b_keppra_children.html

http://www.epilepsy.com/medications/b_keppra_side.html

http://www.epilepsy.com/medications/b_keppra_work.html

 

Best Wishes,

Epilepsy.com Editor

 

RE: Weaning off phenobarbital

Submitted by fishergal on Wed, 2005-03-09 - 22:32

hi, phenobarb is highly addictive.  When my doctor took me off gradually, it was not fun.  I was an adult and knew that my body was addicted.  I got so fed up that I flushed the pills and went cold turkey through the shakes and all the stuff your body does.  Mind you, I was so addicted that I could take enough to overdose most people.

I tell you this because what you may think are seizures are in fact the results of withdrawal.  And bless you all the little one is too young to understand what is going on.  I don't recommend what I did for anyone, but I had the shakes and craziness just trying to wean off.  If I had been emotionally addicted, I couldn't have done it. 

Oh and know that it takes time even after you are off to readjust.  Bless you all

hi, phenobarb is highly addictive.  When my doctor took me off gradually, it was not fun.  I was an adult and knew that my body was addicted.  I got so fed up that I flushed the pills and went cold turkey through the shakes and all the stuff your body does.  Mind you, I was so addicted that I could take enough to overdose most people.

I tell you this because what you may think are seizures are in fact the results of withdrawal.  And bless you all the little one is too young to understand what is going on.  I don't recommend what I did for anyone, but I had the shakes and craziness just trying to wean off.  If I had been emotionally addicted, I couldn't have done it. 

Oh and know that it takes time even after you are off to readjust.  Bless you all

RE: RE: Weaning off phenobarbital

Submitted by Willsmom on Thu, 2005-03-10 - 09:58
Thanks FishergalThis is important information for us. My Son is trying to wean off of Phenobarbitol. He has not been using it for too long ( 8 months) but We are concerned about the addiction part of phenobarb. He also has interesting side effects like lots of extra saliva and hallucinations.We are decreasing in minute amounts ( 5mg. at a time over 2 weeks first and then of=ver 6 weeks second) the first reduction went well but the second has been a little bumpier, some jerks and one TC.From what you have said I think that we will not loose heart. I thought maybe pheno was a life sentence for my Son, but it may be withdrawl causing these breakthroughs instead.. we'll take our time getting off and see.

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