Side Effects of Phenobarbital

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Starburst

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I posted this in the Nursery but did not receive much feedback. Perhaps those who have experience taking phenobarbital themselves as children may have some insights.

As I have mentioned in other threads, my infant son (age 11 months now) has been taking phenobarbital since he was just a few days old. I have often read that phenobarbital has the potential to cause learning problems and other issues in children. My question is: if these side effects affect my son, would it be something apparent while he is actually on the medication, or is it something that could happen later on down the road after he has stopped taking it? I mean, let's say he takes the medicine for two years and then stops because he no longer has seizures. Would he still be at risk for learning disabilities when he is three, four, five, or even ten? Hope my question is clear.
 
Well, I'm not an expert, but I was on phenobarbitol for a couple weeks when I was about 12 or so. After a couple days I crawled into my mother's bed and refused to get up. I just laid there and cried. She went to the dr. and he changed the med to mysoline. I have been told a person's body changes that into a phenobarbitol but I don't know if that is accurate. Thereafter I believe it was harder and harder for me to learn things. My grades went from near all A's to B's and C's. I don't know if that was from just being so tired all the time I couldn't focus on what a teacher was saying. Anyway, I hope somebody knowledgeable will reply and I wish you a lot of luck. I'm sorry you are dealing with this with your infant son. Must be really hard.
 
Your question is clear only very hard to answer as it is quite scholarly. You could try the American academy of pediatrics or try contacting the drug company directly. I hope you find some answers, and I applaud your efforts to help your children :) maybe you could post some links for us if you find some information. Good luck.
 
Thank you to those who answered. We just started my son on keppra and are tapering down the phenobarbital. I asked the neurologist about the long-term effects of phenobarbital, and he said there should be no worries down the road. According to him, the learning problems (if they are to occur) take place while the person is on the medication, not later on. He does not favor phenobarbital for children older than one year old. It wasn't controlling my son's seizures anyway, so it's just as well.
 
Sorry but both of them suck im on both right now cant even be weaned off phenobarbitol been on too long.and keppra all I can say is good luck its terrible go from sad to wanting to hit something in my case and a few others but eveybodies bodies act different
 
Yes, I agree that both of them suck, and I hate giving these medications to my young son, but I feel like I have no choice as I would never forgive myself if I left my son's condition untreated and he suffered worse problems later on. I have another son with epilepsy that was left untreated because we did not know about it, and things have been very bad for him. There are so many unknowns with this condition, and it is very frustrating. How long have you been taking phenobarbital? How much are you taking? I am really sorry to hear of your difficulties.
 
I have right temporal lobe epilepsy. I was on pheno. along with dilantin for many years-right after I married.

I stuggle all through school, I wasn't on meds. during that time of my life, just having the absence seizures.

I have been on about all the meds. for E. and I cann't handle them for one reason or another.

I went back to my old Neur. asked to be put back on dilantin and pheno. I had just taken myself off Keppra. (DON'T ADVISE ANYONE DOING THAT)

Anyway my neur. agree to put me back on dilantin but refused to put me back on pheno. To this day I don't he reason.

I don't if this helps you in anyway, I applaud you for all your doing to help your child.

Prayers,
Jyearta
 
Oh umadam I totally agree and I have had mine for 15yrs I take 30mgs in the morning and 100 at night or 97.5 watever that means and I totally get it wanting to do everything to make sure its not as bad I have been @ same dose for 5yrs now if not more have had generalized epilepsy for 15yrs since I was 15.keppra been a nightmare a atrain on my marriage on 3 other meds but my mom from the get go helped my sis with her epilepsy sent me to live somewhere else as a kid no hard feelings hers r focal
 
Doing the right thing but if his personality or behavior on keppra seems a lil rough its not him.sorry for long posts before then again might just work and no more issues.always think positive
 
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