We took Oia to her 6 month follow-up with Dr. T, her neurologist, at the Epileptic and Pediatric Neurology Clinic Friday afternoon. Of all the wonderful things that have come out of our move to VA just under two years ago, I'd say Dr. T has a spot high on our list.
The visit went well and was uneventful which is the outcome we want for any appointment. Dr. T spent ample time observing Oia as she navigated and explored his small office. He noted she was moving very well, with super control, and was doing great. He asked us the usual questions regarding her eating and sleeping habits; all of which are fine. And of course the big question regarding seizures...have we seen any seizure-like activity that may cause concern? That question makes me want to tap, knock, rather bang hard on any wood surface I can put my hands on because, no, Oia does not suffer from seizures, at least thus far.
I have never seen eyes wider on a doctor than when we tell him this. "Wow" and "Let's hope it just continues this way" is pretty much all he can say. We know, but he reminded us again, that Oia has every reason in the book to have seizures. Medically speaking, EVERY reason. Thank you, Schizencephaly.
Seizures are the one thing I'm not sure I can handle and fortunately for us, we haven't had to yet. And yes, I say yet. I'm waiting on the ball to drop. Seizures are always, and I mean always, in the back of my mind. Every. single. day.
It's hard for me leave it alone. I asked Dr. T if there was a window in which kids can have seizures or begin getting them or perhaps even outgrow them. He said there are no definitive windows; really one could rear its ugly head at anytime although puberty can be an onset of seizure activity or increase the frequency if seizures are already present. And for females, estrogen is a booster for seizures. So, we have that going for us too.
It's scary to say the least. I know there are parents and kiddos who deal with these nasty, often uncontrollable, things on a daily basis and my heart hurts for them. I've even stopped reading postings from a yahoo group on Schizencephaly which I belong to because these kids are plagued with seizures and their parents are grasping for answers. It's too much for me handle; I'll cross that bridge if and when I have to. But I still wait...thinking that the waiting game will keep them at bay. They say a watched pot never boils and that's how I describe my grip on all of this. I'm watching my pot and hope and pray it never, ever boils.