Hello, my daughter started having seizures when she was 5 months old. She ended up in the hospital and after testing was put on Phenobarbital.
The seizures were under control but she didn't seem to have a personality anymore. She was delayed in everything. This past October ( four months before her second birthday) we had her fully weaned off the medication. I had , had a long talk with her doctor about how I thought the Phenobarb was effecting her and since she hadn't seizured( that I know of) since she had been on meds he let us take her off. She hasn't seizured since but is still very delayed.I definately agree with Jolee, that early intervention makes a huge difference. My daughter has been seeing the CARE ladies (physical,speech, and general ) since she was little and they have helped us alot.
Taylor is 27 months now and still doesn't talk. She'll very randomly say a word, but not often. She has been making small strides developmentally since we took her off the phenobarb. She started walking not long after she was weaned and socializing a little more( mostly through sign and play) . I notice personality in her.
We are getting another Eeg and an MRI done soon.
There are posts on another epilepsy message board talking about the effects of phenobarb and epilepsy on infants and young children.
I'm sure you already have but I would talk to your pediatrician about your concerns. I know how hard it can be to watch your childs development and stress about why they aren't hitting their milestones when they should. Although I'm lucky that my daughter hasn't seizured since she was a baby I'm still dealing with the after effects, trying to help her catch up and wondering if it's going to be long term or if she is going to catch up and eventually be where she should be developmentally. Only time will tell.