anyone got info on childhood epilepsy?

Discussion in 'The Watercooler' started by Mom2oddson, Feb 18, 2011.

  1. Mom2oddson

    Mom2oddson Active Member

    This is about baby Nevaeh (see watercooler). The doctors are thinking it's childhood epilepsy and that she might outgrow it. They will be doing more tests to see for sure.

    Anyways, what I'm looking for is info to give to the 17 year old Mom. Support groups, sites, etc....

    Any advice that I can pass on will be good.

    Thanks so much.
  2. slsh

    slsh member since 1999

    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.
    Last edited: Feb 19, 2011
  3. Hound dog

    Hound dog Nana's are Beautiful

    I ditto Sue!

    I only bought into the "live with it" deal because docs gave me no choice in the matter as they all refused to treat................I'm thinking Travis' severe reaction to phenobarbitol was part of that.......but I do know they seem very hesitant to treat infants and young children.

    An excellent pediatric neuro is a must. If mom doesn't feel comfortable with him, go for a 2nd opinion, but make sure she finds someone knowledgeable and she can trust to help her make decisions.

    Even at 12 they were thinking to still wait and see...........until I found a really good neuro who did a sleep deprived EEG which shows that unmedicated the boys brain is nearly constantly in seizure state, and 30 yrs as a neuro he'd never ever seen one like it before.

    Educating herself is the key. Knowing when to call for help and when to get them back into neuro is important. I was lucky, I could keep in contact with the neuro via email and he checked it constantly which meant all I had to do if a problem came up was mail him and within 5 mins I always had an answer, if not from him personally than from his RN who also monitored it.