We entered a brave new world with Schuyler this past week. She is now taking anti-seizure meds.
Schuyler has likely been having mild seizures for a few years now, first absence seizures and later complex partials. Despite the sage and informed input of that great source of medical wisdom known as Random Internet Stranger, we instead took the admittedly radical approach of heeding the advice of Schuyler’s neurologist, who declined to put Schuyler on any meds until now.
“The potential side effects of even the mildest anti-seizure medications probably outweigh the benefits at this time,” he said. “These medications can have a profound affect on a child’s behavior and emotions, as well as their ability to learn effectively in school. We’ll revisit this if things change.”
Last week, things changed. And they changed enough that her neurologist is concerned about the possibility of Schuyler’s brain transitioning, from complex partial seizures to… a bigger, badder something. We all want to avoid that if we can.
In addition to taking what Schuyler is calling her “brain pills”, she’ll also be having an MRI in the near future. Her neurologist didn’t see any point in another EEG to try to catch one of her elusive seizures in action. But he does want to take a look at her brain again. Her last (and only) MRI was done ten years ago. It was the scan that led to her polymicrogyria diagnosis in the first place. Like an absent landlord, it’s not a bad idea to see what her little monster has done to the place over the years.
This is all small potatoes. I get that. I know that most of her PMG peers have been on anti-seizure meds for years, some from the very beginning. I’m agonizingly aware that some haven’t survived their own seizures, including yet another last week. I know that if there really were a Broken Brain Olympics, Schuyler might just barely make the squad, never mind the medal ceremony. While her brain is indeed quite fantastically broken, maybe as much as seventy-five percent malformed, it nevertheless has rerouted and rewired itself into a remarkably functional and clever bit of thinky bits. She’s lucky, I know this with my head.
But my heart still squeezes when I think about this. She’s my little girl. And putting her on meds feels like a major step, a recognition that this really is going to get harder before it gets easier for her. It’s a step that we take without hesitation, of course. We might question a good deal of what her teachers advise, but never her doctor. (Except for asking about generic versions of this med, I should say. I’ll spare you the Big Pharma rant, but good lord. Someone’s making some serious cash out there.)
The first night she took the first dose (a very small dose, I might add; she’ll be ramping up to her eventual full dosage over the next six weeks), I was nervous. I don’t know what I was expecting, but Schuyler’s brain, by virtue of its remarkable rewired structure, is a huge unknown to us all. And the potential side effects of this med spelled out on the info sheet were daunting; I half expected to see “werewolfism” listed.
I watched Schuyler for the rest of the night, but of course there was no change. She went to bed a few hours later, at her usual time and under her usual protest. And here’s where I make an embarrassing confession. I stayed up for a few hours, unable to sleep myself. And then I did something I hadn’t done since she was a baby.
I went to check on her, to make sure she was okay. More to the point, to make sure she was still alive. And then I stayed in her room for a few hours. That’s where I finally found some elusive sleep.
She’s going to be fine. I probably need to get a grip, though. Seriously.
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