a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Monday, May 17, 2010

A Watched Pot Never Boils

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.


  1. A blessed absence of seizures but that ever present worry. You expressed this well - the watch pot is a perfect analogy. Barbara

  2. Hey I know it is a constant fear. Maybe Oia is just that wonderful miracles who will not have them. I know you can't help but worry, you HAVE to, Mo. When Faith had the first seizures when she was born, she didn't have any more for a VERY long time almost two years. I over analyzed every single little movement she made. She developed tremors in her right hand about 6 months old and I totally freaked out! Of course, her seizures did come back, my worst nightmare. I still struggle with them. But she is doing good on the meds now.Will keep your concerns and fears in my prayers, Mo! Hugs for the good news at the visit,friend!

  3. Sounds like a great visit! Seizures are always on my mind, too, and we are also blessed that we don't have to deal with them. The watched pot was a PERFECT anology! I feel the same way. It's a terrible feeling just waiting, and watching every move. Oia is a fighter, and nothing will slow her down.

  4. I feel exactly the same way with Katie. I'm pretty sure that I go way overboard with trying to avoid things that could bring on seizures. A cold, flu, etc. For what it's worth, our Neurologist (who is excellent) has given me the following stats:

    2/3's of kids who will develop an ongoing seizure disorder will have them before the age of two.

    95% of the other 1/3 will have them by the age of 6.

    The other 5% get them during puberty.

    Fevers can cause a seizure. Colds and the flu can, in and of themselves, cause seizures (without a fever). If our little ones at risk, have one errant seizure during a cold, etc. they are much more likely to develop an ongoing seizure disorder. (Typical kids will likely not have any more if the original cause was cold/flu)

    I'm completely paranoid about getting Katie through her young years without having one. I also think about it every day. I'm REALLY struggling with enrolling her in preschool (although she really needs to be with other kids) because of all of the illnesses they tend to pick up. ARGH.

  5. Seizures are no fun. I hope Oia will always be seizure free.