|art by Adrienne P.|
When we visited Sophie's neurologist last week, Sophie was brewing a cold and had had a bad day, seizure-wise. She was clammy and spacey, sat in her wheelchair for the entire time and didn't make great eye contact. She had been seizure-free for nearly two weeks until that day, and a part of me was not only bummed that I wouldn't be able to share a seizure-free child with The Neurologist but also anxious that the seizure-free period was just a dream, a honeymoon, the usual. That being said, The Neurologist was pleased to hear of the efficacy of the Charlotte's Web, and she recommended that we start to wean Sophie from Onfi, the benzodiazepine that she's been taking for years. The Neurologist is a woman, younger than I, very kind, thorough and efficient. When I left her office and drove home, I had to wonder at her equanimity, and -- by extension -- the relative nonchalance of the neurological community in general, in the face of what I believe is a revolution happening in epilepsy treatment.
It seems to me that these people should be freaking out about these kids. Yeah, yeah, I know A Scientist has no business freaking out over anecdotal reports from a patient. I realize they have to do the double-blind placebo controlled studies and protocol must be followed. Yeah, yeah, I get that. But you know what? Sophie was diagnosed with infantile spasms when she was not even three months old. Since that day she has been on twenty different drugs in different combinations and has tried the ketogenic diet twice. She's been infused with immunoglobulin fifteen times. She's been tested for all known genetic mutations that would call for specific treatments and come up negative. She has never been seizure free in nineteen years. Until now. Until a few weeks ago.
That, to me, calls for a doctor shrieking in the hallway to his or her colleagues.
What this reminds me of, though, is the day, years ago, when Sophie was diagnosed with infantile spasms by two young Fellows of Neurology. I wrote about that day and mused on whether a more appropriate way to communicate the terrible news that was let loose would have been for those Fellows to wrap us in their arms and weep for us.
I want The Neurologist to shriek in the hallways about Sophie and the other kids who are seeing this treatment work for their kids.
Until then, I will do so.