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infant epilepsy and developmental delays

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bbbecki78

New User, Becoming EHEALTHy
Joined: 28 Jan 2008
Posts: 5
infant epilepsy and developmental delays
Posted: 03-24-08 17:45pm

Can anyone relate or provide postive outcomes?

My son is seven and a half months old. He began having siezures at four months, and has had them ever since. He started on phenobarb which controlled them for a bit, over time they started up and medicine was increased to try and control them. He got to a point where he was having 20-30 a day and had an eight day hospital stay to try and figure out what was causing them. He is now on phenobarb and topmax and it seems to be working. He has had a normal MRI and tons of blood work that has come back normal. He has had three abnormal eegs. My son also has significant global delays. He looks very normal but does not smile much, play with toys, or do much but lay. He has physical therapy in place weekly to help with muscle contol. I am devestated and so scared about what his future holds. Can anyone relate? Thank you for taking the time to read this!
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jolee10

New User, Becoming EHEALTHy
Joined: 04 Apr 2008
Posts: 5
positive outcomes
Posted: 04-07-08 20:12pm

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.
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bbbecki78

New User, Becoming EHEALTHy
Joined: 28 Jan 2008
Posts: 5
thank you
Posted: 04-08-08 07:46am

thank you for your reply. If you want to share stories, pm me.
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mommy_25

New User, Becoming EHEALTHy
Joined: 06 May 2008
Posts: 1

Posted: 05-06-08 14:57pm

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.
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tilley

New User, Becoming EHEALTHy
Joined: 15 May 2008
Posts: 1
siezures
Posted: 05-15-08 06:56am

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.
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