http://www.epilepsyfoundation.org/
I think the 2 best things Mom can do is get well educated on Nevaeh's form of epilepsy (know what to look for, how to manage the seizures, when to call for help) and have a great neuro. I never bought into the learn-to-live-with-it philosophy, especially since Boo would have seizures up to 2 hours long. It took me a while to find a neuro who agreed with me, but it was well worth the search. Boo's been (knock wood) seizure free for 2 years now, and even before that his genius neuro had really gotten the frequency down. A lot of medication tweaking along the way, and he is on 3 medications with another one we use if/when he does seize, but it works and that's great.
I'd have her check with- her local Children's hospital for support groups. Another thing maybe to consider is to look into the birth-to-3 program locally for early intervention services. I think that would be great for a couple of reasons - I think it's important to be as proactive as possible to make sure the epilepsy doesn't impact Nevaeh's development, but it would also give Mom the opportunity to interact with other parents who are kinda in the same boat. My memories of the families I met during the birth-to-3 stage have less to do with- the diagnosis their kids might have had and more to do with we were all parents who were not having the parenting experience we had anticipated. I know Nevaeh is extremely young, but when they say "birth-to-3", they really mean
birth.
I hope that she does outgrow it. I really don't know much about childhood epilepsy - Boo was prone to it because of his brain injury and when the seizures started, the hypothesis is that it was triggered by puberty (he was 10). We were hoping that once he was thru puberty, they'd stop but... no such luck, LOL.
