OT-infant epilepsy

[jennilouwho]

Hi there!

This isn't Disney related, but hoping someone could help. My niece (8 months) has been having some pretty serious brain seizures (hypsarrhythmia seizures) that they discovered a month or so ago. There is a good chance she may not be able to ever walk or talk. She currently is at the level of a 1 or 2 month old. I'm trying to help my brother and sister-in-law find some good support groups online where they can go to know they aren't alone and to ask some questions they might have. Does anyone know of any good forums for this type of situation?

Thanks so much!

Jen

 

[alizesmom]

Try Brain Communities, Child Neurology site is brain.hastypastry.net/forums/forumdisplay.php?f=115
I just found it myself but it seems to be helpful. Karen

 

[forr2grls]

I 2nd the brain talk communities.I've been a member for a couple of years.It is a wonderful place. Here is the link that you can click since previous poster can't post direct links yet. http://brain.hastypastry.net/forums click on child neurology forum.There are many parents there dealing with seizures in their children.

Paula

 

[jennilouwho]

Thank you! I will pass this along to them.