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Epilepsy Awareness: The Buzz Word is Control

  • Posted on November 8, 2012 at 10:57 AM

So, November is Epilepsy Awareness month and, apparently, the color is purple. Well, I think I’m covered there!

At this point in our epilepsy adventure it’s all about control. Last time we went to the neurologist, he upped Willy’s dosage of Trileptal. Since then, Willy has had only one seizure (that I can remember being told about) and it was after he missed a dose. I’ve gotten him a fancy pill box that holds a whole week’s worth of pills, with boxes for both morning and evening doses and with extra boxes if he gets mid-day doses added to his medication schedule.

It may be too soon to feel so confident, but I think this medication and this dosage will continue to be successful with seizure control. Willy has enough medicine in his system now that even if he does miss a dose it doesn’t automatically mean he has a seizure. Though, I’m getting better about checking to make sure he doesn’t miss a dose and he’s getting better about remembering to take his medicine so he doesn’t miss a dose. None of us want to take that chance.

While controlling the seizures is a major victory, other issues of control have arisen. I recently attended an IEP for Willy. We discovered that the periods when Willy’s anxiety and depression-like symptoms have seemed to get better at home, they’ve gotten worse at school, and vice versa. So, there’s not a reduction of anxiety. It’s simply being displaced between his different environments. Along with the anxiety and depression, we’re seeing decreases in his self-control and impulse-control. Now, after two years of not needing one, we’re going to have to create a behavioral intervention plan for school.

Unfortunately, there are too many unknowns. Is the re-emergence of these behaviors and the increase in emotion instability a result of the onset of epilepsy? Is it a side-effect of the medication? Is it the result of puberty? Is it a combination? Or is it its own thing? To try to get answers and help, we’re going to seek out a therapeutic psychologist with experience with children with autism and we’re going to try to make sure the psychologist, the neurologist, and the school can work together effectively.

On the up-side, bullying no longer seems to be an issue.