Monday, November 18, 2013

So, About Epilepsy Awareness Month...

Cure for Epilepsy? Yes, please! 

November is Epilepsy Awareness month. As you know, we were thrust into this club over the summer. Without warning. With no history of seizures. No illness, no trigger, nothing. Although I am well aware that a lot of kids on the spectrum experience seizures, it was something I never thought we'd face. My kids are older, healthy, and I was under the assumption something like Epilepsy would reveal itself earlier in life.

Well, 5 Grand Mal seizures over the course of 3 weeks changed all that. One hospitalization, and one prescription for Depakote later, November suddenly means something different. Sure, I've known people whose children have seizures, but without first hand experience, I didn't get it. How scary it is to watch your child seize. To watch them take four.long.hours to get back to "normal" (Ben does not have a short recovery time, and seeing your child lose the physical ability to speak, while looking at you with sheer terror in his eyes, it's not something I'd wish on anyone.) Seeing your child change after seizure #1, his behavior, just something about him, it's devastating.

B is still B, but he's a little different now. Epilepsy brought with it severe hyperactivity (I describe Ben as my little pinball.) It brought with it bouts of him looking really sick and really pale, for no apparent reason (this started after the seizures, and we have no idea what's causing it, yet.) It brought with it sleepless nights (for me), and took from B things which he loves (gymnastics, swimming without a bubble, using the playground equipment at school.) It's led me to scary Google searches, and worrying what this will mean for B down the road, if he isn't one of the lucky people who "outgrows" it.

Epilepsy brought with it doctors who are so used to seizures, they fail to understand parents like me are not. Who hand you a prescription for medication that could pretty much kill your child's organs, and think you shouldn't be concerned, ask any questions, or request further testing.

Epilepsy brought with it no explanation to why this was happening to my boy. Doctors can't even guess. No one knows what causes it, unless there is a specific genetic condition found. My child's brain went haywire, and no one can tell me why. What it means. What to expect. Nothing.

The truth is, all I knew about Epilepsy came from TV, or maybe from a friend here or there. People flailing around like a fish out of water (not at all how an actual seizure looks.) An infant getting a high fever, and having a seizure. A child staring off into space, or someone finding seizure activity during a sleep study. If anything, I thought those were the type of seizures we'd experience (not that those aren't scary or serious, too.) They just seem more common, especially with kids on the spectrum. I was in no way prepared for the kind of seizures B experienced, and didn't even recognize what it was the first time. I had no idea how scary it would be to receive an Epilepsy diagnosis. Everything that could come along with it. That sometimes even unexplained death occurs.


I've been through a lot with autism, but I have to admit Epilepsy scares me much more. I don't care if my kids live with me forever, I just want them to live. I want them to be healthy. Something potentially taking that away...I can't explain how it makes me feel. I really can't. It's what keeps me up at night.

So, while I think it's time to move on from autism awareness (I have very different thoughts about each condition), I think it's time for people to actually become aware of Epilepsy. I know I had no idea what it really was, or what to do if I ever saw someone having a seizure (if I even recognized what it was), before B was diagnosed. I even had someone refer to B's seizures as "fits", so clearly educating the public as to what Epilepsy is, and what is isn't (he's not crazy!), is important.

For more information on Epilepsy (because you should 100% educate yourselves), check out these websites:


Epilepsy Foundation

Danny Did

Talk About It

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