heartbreak

By Margaret Finnegan

She was in the tub singing Christmas carols. Mid-verse, she stopped. I said, “Are you okay?” She didn’t answer, and I knew then that everything had fallen apart. That after seven years seizure-free, my twelve-year-old daughter, Sia, was having a seizure. But what I didn’t know was that at that moment we were losing her, or, rather, we were losing the essence of her. And it wasn’t to the epilepsy. No. It was to the drug that was supposed to help her.

I should make it clear that I am a big believer in western medicine. I believe in vaccinations and mammograms and pills of all sizes and shapes. But this I know, when it comes to controlling seizures, everything is guesswork: Here, take this yellow pill. No luck? Add the blue pill. Still no luck? How about the white pill? Which leads me to Topamax, a little white pill about the size of one of your smaller baby teeth.

Topamax is an anti-convulsant, and it’s sometimes called dopamax because it makes you stupid, which is why no one starts your kid on Topamax right away. They wait until a bunch of other medications prove ineffective and then they prescribe Topamax. By the time Sia was prescribed Topamax two years after that day I found her in the tub, she had gone from being a spunky if quirky girl to a monster of fear. She was afraid to bathe because of the tub incident. She would say she had showered when she had only gotten her hair wet, and when she got to school her hair would dry into oily ribbons, and on her face she would wear a look of abject terror, and if anyone would talk to her she would tell them how scared she was that she might have a seizure. Of course, those are all excellent ways to drive away friends and to mark yourself as the sick, weak wildebeest of the middle school savanna. Kids she didn’t even know would follow her in the halls and yell, “seizure, seizure, seizure.” Whenever a teacher left the room, boys would turn the classroom lights on and off, knowing full well–because she told them–that flashing lights could actually cause her to have a seizure.

When you are watching your child fall deep into the rabbit hole of victimization and anxiety and depression and friendlessness and hopelessness and seizures, you eventually reach a place where you start to say, “You know what we should do? We should totally remove half her brain,” because that is a treatment for epilepsy. Neurosurgeons remove the part of the brain where the seizures originate and oftentimes that will stop the seizures. But Sia was not a good candidate for brain surgery so instead we continued her on a horrible cocktail of drugs that included the stupid pill, Topamax. Continue Reading…