What are the effects of Phenobarbital on babies?

My 7 month old baby boy, Benji, was recently diagnosed with epilepsy (simple partial seizures, occipital lobe, manifesting as a turn of the eyes and head to the left, sometimes with a smile or vocalization, daily and very frequent). We had been told before that the eye movements were nystagmus until a long EEG revealed that they were seizures.

Benji started Phenobarbital several weeks ago and the seizures have not stopped but are a bit less frequent. The dosage has been increased several times and he is now taking 60mg daily. I've noticed that he's a bit less responsive and more lethargic, and the only information about side effects from his doctorsrefer to sleepiness that eventually subsides.

My question is this: What effect will the medication have on his brain activity? Will it take longer to learn or develop? It may sound crazy, but I've noticed that his head feels cooler and sometimes clammy (his head is often resting in my arms while he nurses). Is this normal? And if brain activity is suppressed, how do I know if it is better for him to be on the medication?

Thanks for taking the time to read my post.

~ Benji's Mom


Re: What are the effects of Phenobarbital on babies?

Hi Benji's mom!

My 4 month old has been on PhenoBarb since being diagnosed with seizures at 3 days old. I can just tell you what I have experienced. I have noticed increased sleepiness and he does tend to be a bit clammy (hadn't thought of it as a symptom until you mentioned it) I don't really see a ton of other symptoms but he is on a much lower dose started at 16MG daily and we have been weening he off for the last 6 weeks.  Our Neurologist did recommend switching to Keppra (SP?) if we saw seizure activity continuing.....

Re: What are the effects of Phenobarbital on babies?

Hi everyone. I'm new to this site. I can't really answer any of your questions, but I was put on phenobarbital when I was 2 years old. I had my first partial the night I was born then they didn't come back till about 2. You will notice the lethargy. My parents and family kept me as active as possible, only letting me sleep for regular naptimes etc. You don't want to add to it. I then went for almost 11 years without any seizures, then when I had my first menstrual cycle they came back. Throughout high school I had tried every med out there and still had seizures, sometimes once or twice a month. I was finally diagnosed with hypoparathyroidsm, which means I was born without any thyroids. So I was also given calcium pills, vitamin D and synthroid and they slowed dramatically. Still on them and doing well, unless I get the flu or something then it seems to trigger one. I'm adding on to my college degree, becoming a pharmacy tech through an accelerated course and taking advanced computer classes. Also getting married in three months. So all I can say is that the times of lethargy will happen, but you and your family can help by keeping your baby as responsive as possible and not letting him sleep all the time. As he grows older into school age repetitive memorization flashcards etc will help. Even something as simple as memorizing phone numbers- it is just the practice of memory that helps. And most important, no matter the situation, don't let the fear of the unknown or other comments take over! When I got out of high school I let that happen for a few years, and that  will mess you up more than any side effect! My fiancee and I are happy to learn that it should not be a problem if ever want to have children. If any of you moms have information on that subject for me I would be glad to hear it! Wishing for the best for Benji!