Hi I know this is a scary time for parents ,we have a similar story to yours. My best advice is to get involved (if your not already) with early intervention as much as possible. Our daughter is 41/2 now and this has made a big difference to her,and the whole family. I am always amazed at how much these children can learn ,we read a lot to her show her pics ,play with her and play a lot of hi five dvds when we need a break, they love the colour and the music. I am happy to talk some more in a private e-mail if you like and share more positive outcomes with you.

thank you for your reply. If you want to share stories, pm me.

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.

Hi my son is now 19 months and still having siezures, on Kappra and Topromax, so delayed, doesn't hold toy's, no head control, and has very limited sight (he sees light and dark). we worry to bits about his future, all MRI's normal 6 irregular eeg's, great pregnancy? He's so beautiful too.

our one twin daughter is now 8 months old.has no head control and we dont know if she can see.we are trying to do everything possible to assit her.she is aeds epilim and rivitrol since she has been taking these aeds we notice a slight improvement in her hearing and ability to smile and even tries to make sounds when spoken to.

Hi! I haven't been on this site for a while and just wanted to get updates on anyone that has time to respond.
Our daughter G has made some progress with sign/conmunnication skills and her level of understanding has come a long way. Later this year she is going to start school(special school) I'm thinking about home schooling as we had a bad year with seizures and still changing meds from Topamax to Keppra.If any one has any thoughts on home schooling I'd love to hear from you. Wishing everyone a great 2009.

Anzo- It sounds like your doing a great job with your daughter keep up the good work it always helps parents to stay positive when they can see some progress.

My son Tyler has had seizures since he was born, but were controlled with Phenobarb. He was born at 28 weeks and is now 8 months.. corrected he is 6 months. About a month ago he started having these episodes that he never had before. He has and EEg and everything was normal, his medication was increased and he became very drowsy which distrubed me because he was a pretty active baby even thought he had lots of delays.
He continued to get these episodes and had to be hospitalized for observation. His episodes were more like he was going aerobics.. he will move his head as if nodding and lift and do some cross action hand and leg thing. After this EEg I was informed that in fact he was having seizures. He doesnt smile or play. He tries to babble and had good head control,but I do worry about his future. He has early intervention and it has helped. They mention that he will be okay.. its just so fustrating to see this happening to my little angel.

Hi My baby girl is now 16 months . 14 MONTHS CORRECTED AGE. She was born with epilepsy and have 350 seizures by the time she was 8 weeks, We tried phenobarb which I hated it was awful and made no difference, we then tried rivitrol, topramax and finally tegretol and keppra. Finally after almost a year we had control. She has been seizure free for almost 7 months now. She didnt devlop at all in the first few months but always seemed happy. She smiled at 4 months and hasnt stoped since. However she is only just sitting up dosent play with toys, will hold them for a second and lets go. she is the most sociable baby ever and every day I think she is getting somewere but realistically I just dont know any more. I dont know if she will ever catch up and have amothers instict thats there is still something not right even though shes not seizing and the MRI shows the damage thats been done dosent actually effect motor skills I think theres something else wrong? Does any other mums get that feeling???

i have a daughter who is about to be one she has had seizures since the day that she was born no cause she has bad developmental delays she wont hold nothing or bear weight on her legs she isnt crawling yet but she is a very social happy baby i was reading another website and a whole bunch of different people said it was the phenobarb that was causing the delays

hello. our baby is 8 months now. she has had seizures 2x. should we rushed her to the hospital everytime she would have seizures? she usually gets normal after 5 minutes. it would be of greta help if you can answer my question. thanks