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Phenobarbitol - weaning

ava&jackava&jack
in Special Needs

Anyone with experience weaning off of phenobarb?  We have been on it for a year and (yay!!) seizure free for a year!  Now weaning off, doing it very slowly (1ml per week over a 13 week period).  Everything has been going pretty smoothly and no sign of seizure activity, but the last 24 hours he has had zero appetite, aside from cheerios and milk in the morning.  I appreciate it could just be regular toddler behaviour, but googled side-effects of weaning off of phenobarb and found a ton of stuff indicating terrible side effects and withdrawal ... just wondering if anyone has any experiences to share and/or things to watch for??

 Thanks!!  Kerri

 

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Re: Phenobarbitol - weaning

  • pastaladypastalady member

    My sister has been on it for 26 years. I know they have weaned her off at different times but she always had a seizure when the dose got low. I do know last time her doctor lowered her dose she had to start taking baking soda (she dissolves it into orange juice and drinks it). Her blood gases were way off after her dose got lowered. My sis has numerous issues though and who knows what is really related to that, if the pheno even played a role. 

    Another note is that my sis has grand mal seizures and as soon as her dose gets lowered she has what they call drop heads. (Just basically dropping her head and zoning out). I will try getting some more info from my mom.

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  • Shayna0182Shayna0182 member

    I myself was an epileptic as a child, and had grand mal and petit mal seizures.  Mine started at around 3 and I had my last one at 13.   After many ct scans and eegs, doctors still aren't sure how I developed epilepsy.  It wasn't by anything physical.  

    Anyway, I'll ask my mom, because I can't remember a whole lot, but I know I was on Phenobarb for a while, and then I was switched to Dilantin. 

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  • ally81698ally81698 member
    I don't have any advice for you but wanted to say congratulations!  We are waiting very patiently for DD to start weaning off Pheno (2 years seizure free = next April).  From what I've read, every child is completely different.  Please keep me posted how it goes - good luck!
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