Newbie here - Anyone else have an infant tx'd w/Epilepsy?

[kim25844]

I am Kim - and have a 20 month old daughter who was diagnosed 2 months ago with Epilepsy. She is currently taking phenobarbitol, 5mg. 2X daily & has been seizure free since beginning treatment.

She has no other developmental problems or disabilities that we know of - and I would just like to speak with anyone who has any experience with this.

Her pediatric neurologist seems to thing she will outgrow it with time - but we are facing keeping her medicated until at least the age of 4.

Thanks in advance for any information.

[Kokopelli]

Hi Kim

I don't have any children hon But I wanted to welcome you to healthboards I am sure beths mom or someone with children can help you once they see your post ...
Again welcome to healthboards


Hugs
Koko

[Krazykcio]

Welcome,
My dear, sweetheart of a neice had seizures when she was an infant. She was on Phenobarb until she was around five, then was switched to Depakote. She remained on anti-seizure meds. until she was a teen. The Doc. took her off all meds at around age 16. She remained seizure free, and four years ago gave birth to a wonderful, perfect daughter. My neice did not appear to have any additional problems, and her cognitive abilities were above normal developmentally. I realize it must be difficult to face having to deal with epilepsy in an infant, but I think everything should be fine. You will find this Healthboard very helpful. Good Luck! Kathy

[hayley's mom]

I have a 19 month old daughter with seizures. She's been having them since she was 7 months old. She was on phenobarbital at 10 months. Gradual at first and then up to 45mg/day. They weened her off of it because they didn't want her on it for too long because of the link with learning delays. She remained seizure free with phenobarb alone for 3 months and then had 2 seizures so they put her on lamictal at well. She is now only on lamictal. I hope you have a good outcome with phenobarbital. It wasn't right for my daughter as she lost her happy spirit. She was lethargic and very very irritable. Almost like magic, within 2 days of taking her off of it, she returned to normal. She was on the phenobarb liquid and then switched to the pill which I crushed in applesauce because she was spitting the liquid out. Like your daughter, mine developmentally is right on track. I am certainly no expert, but from everything I have heard, keeping her on the medication for over 2 years seems awfully radical. Not to be a know-it-all of any kind, I would suggest getting another opinion. Is she under the care of a neurologist. I am only trying to offer advice and mean no offense of any kind. Keep me posted. I am interested in how she preogresses.