Scared of seizures

Ah, how much can change in a day. Yesterday, it was 65 degrees and Max seemed fine. Today, it is a snowy winter wonderland and I am a little panicky about the possibility that Max is having seizures. I fear them. No, make that, I am terrified of them. Max had seizures at birth and a grand mal at one and a half, and the experience was just as traumatic as those two weeks at the NICU after he was born.

When I was at Max's school last Friday for his birthday, a couple of aides mentioned that they noticed he sometimes stared off into space. I've seen Max do this, but I can snap him out of it by saying "Max!" The underlying fear here is absence seizures.


Here's a video of a girl having absence seizures. They're subtle, but watch how she spaces out and her repetitive jaw movements. I first saw this video over at Fighting Monsters With Rubber Swords; watching it was worse than seeing a horror movie.

The second I left the school, I called the neurologist. Who got back to me and confirmed that they weren't absence seizures if we were able to break him out of the trance by calling his name, by touching him, by giving him a new visual target.

So, I shot off an e-mail to Max's teachers, therapists and the school nurse mentioning the above and saying they should try to break his stare if they see him doing it. Tonight, I came home from a work holiday party to find a form in Max's school book from the nurse. The top of the form says, in all caps, "ASSESSMENT OF SEIZURE ACTIVITY." My heart skipped a few beats. I read down the checklist. She noted he was staring, his arms and hands would stiffen, and that in the "post-seizure state" he would spastically move his arms. And that "this is worth reporting to the neurologist." Nowhere did it mention whether she'd tried to break his stare. Which is why I am sitting here at 12:10 a.m. and worrying.

I know this nurse means well. Yet I am agitated that this Form Whose Name Shall Not Be Spoken was sent home to me, no phone call. Even if she is just making observations and not saying it definitely is seizure activity (and she just chose to make her notes on an unfortunately named form), I tend to be very, very literal about this sort of thing. I also know that I am agitated because I am scared that what she is saying is true. It seems incomprehensible that my sunny little boy could be having seizures in front of my eyes.

I am going to sleep now, it's what I need to do.