Phenobarbital withdrawal

Emily - posted on 09/06/2010 ( 14 moms have responded )

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Has anyone's child weaned off of phenobarbital? My son has been on this since he was 12 months old. He hasn't had a seizure now in 2 years, so we're trying to wean him off the meds. He has been hyper-sensitive about EVERYTHING lately. Cries at the drop of a hat. We are weaning slowly, over a 6-month time period. Does anyone know if these symptoms could be due to the med withdrawal, or is this just normal 3-year-old stuff?

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Colleen - posted on 09/08/2010

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Iam weaning my daughter from phenobarbital she is 5 yrs old. she has been on it since she was 8 months old. She has mood swings . I heard it is very hard wean you have to go very slow. We are off our am dose now weaning pm doise. She has better eye contact and more of a attention span. Good luck!!
Colleen

Danielle - posted on 10/06/2010

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I do agree it is a good idea to get off of Phenobarbital if at all possible. The neurologist that my daughter has now says he only uses it in severe cases because of the risk for cognitive problems. I only wish I had known when my daughter was little. She was on it for 5 1/2 years and has had lasting effects. She has severe learning disabliities and though she is 12 she only learns on about a 1st grade level. Again, best of luck.
Danielle

Karen - posted on 09/18/2010

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I was weaned off phenobarbital myself and it took up to two years. I was taken off it by half pills. as for another type of medication you must talk to your doctor but I would NEVER recomend Dilantin. I am now takeing Frizium, works great.
Karen I wish you good luck

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Sandy - posted on 11/21/2014

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Has anyone lost weight as a result of weaning off phenobarb? My Grandson had a shunt placed at 6 months and has not gained weight in the last month. He;s been weaning off phenobarb and his head circumfrence is less, but the pediatrician wants to admit him for not gaining weight. He is eating, just shows more irritability with the weaning. I think admitting him will just add to the irrtation.

Lori - posted on 05/02/2011

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Hi!
My son was also started on phenobarital when he was 13 months. His seizures were due to a Subdural hematoma, but had no seizures after the surgery. So he in the last week of being weaned off the pheno and he is now almost 28 months. (was originally on 4 ml x 2 a day, now on 1ml x 2 day). He is moody, somewhat sensitive at times. When we drop him off at daycare sometimes he displays separation problems. There are sometimes he wakes up at night crying, not sure if it is nightmares or coming off the meds. We are hoping when the pheno is done it will ease, but now that I have ready your post.. I am thinking it could be a combination of both the weaning & age related. But on a positive note, other than being a bit moody and whimpery.. one more week to go and he will be drug free! Good luck!

Danielle - posted on 10/06/2010

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My daughter was on Phenobarbital for 5 years and when we decided to wean her off of it, we did it over about a 1 year period. Her doctor wanted to do it VERY slowly due to side effects. I know besides behavioral effects, weaning too fast can also cause withdrawl seizures due to the narcotic withdrawl. Please check with your doctor and be very careful with the withdrawl. Best of luck.
Danielle

Emily - posted on 10/02/2010

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Kerry, that's exactly what I'm worried about. Thanks everyone for your responses. It means a lot. We're still trucking along here... he's now at half his former dose. No seizures so far. Hopefully will stay that way.

Jody - posted on 09/28/2010

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I would think a little is him experiencing things in a different light since he's been on it for so long. It's great that you're weaning him off of it though, phenobarbital is one of the oldest and potent seizure meds out there. They used it on Logan to sudate him into a coma when he had his anoxic brain injury, shortly after being released from the hospital I did some calculations from the WebMd site and found the nuerologist was over doubling the amount he should have for his height and weight. I obviously had to get a new nuerologist. I was referred to the student that studied under the old nuerologist and we've been great ever since.

Kerry - posted on 09/21/2010

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I live in Florida and all the Neurologists around here love Phenobarbitol but only for up to a Year Old. I have been to three Nuerologists in the area, and they all say its not safe for a child after they hit 1 year of age b/c it is very likely to cause cognitive problems. My daughter is 8 months old and we are beginning the weaning process. My Dr has me lowering her dosage by 1mL every week!

Christine - posted on 09/18/2010

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my husband was weaned off phenobarbital and they did it over a 1.5 year span.....neuro says its a long process but necessary to lessen the withdrawals....hes had a few side affects.....hard time sleeping....and moods indeed.....good luck and its not a great drug to begin with so im glad they are taking your son off

Nicole - posted on 09/16/2010

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My son was weaned off in about a 3 month period and I didn't notice any side effects. However he was still a baby, but I would think he would have been very whiny or something if he were having withdrawls. I wish the best, I know how scary this is!

Amy - posted on 09/16/2010

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it is very hard to get off. i have been tried to be taken off before n the withdrawls where to bad. 6 months is a good time span for trying though. i wish you luck!

Emily - posted on 09/09/2010

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Thank you for the reply. Yeah, I'm really worried about behavioral or cognitive impairments from long-term use of the phenobarb. His neuro said we could try a different med if his seizures start again.

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