as extreme as the one that almost made me fall.
“We understand that you’ve treated Tourette’s cases,” my father says to Dr. Holmes, getting right to it, as usual.
“Yes, a large number of them,” she answers.
“How many have you helped . . . I mean . . . well, as a percentage?” my father asks, trying to pin Holmes down. He’s as suspicious as I am and is never afraid to be direct.
“About eighty percent,” Holmes says without hesitation.
None of us is expecting a number that exact or that high. It’s too good to believe, even though I want to. The last thing I need is another false hope, but it means a lot when a woman of her stature makes such a specific claim. She’s instantly put a chink in my armor.
“From what I’ve seen so far, I’m fairly certain my treatment will work for your son,” she adds without much emotion, as if this life-changing, lifesaving promise is everyday small talk. She’s all about facts and research.
“The treatment is simple,” she goes on to say. “We use tetrabenazine. Most of our patients respond well to it. The dosage has to be monitored closely, however.”
My rising hopes are suddenly smashed. After all the buildup, Dr. Holmes is only talking about another medicine. One more to add to the long list.
In a few minutes, the meeting ends abruptly when the doctor just gets up and walks out of the room, cutting off any more discussion. Not even a good-bye.
After another meeting with Dr. Holmes’s assistant, we stop off at a reception desk and are given a form to sign that lets us get the tetrabenazine, which, it turns out, isn’t usually legal to prescribe in the United States, except through a few special licenses, one of which Dr. Holmes has.
During the ride home we all sit in silence. Even with the name of yet another drug ringing in our ears, there is an air of subdued excitement, as there has been every single time we’ve gotten a new medicine or a new piece of advice. A faint ray of hope. Not much of one, as far as I’m concerned, but better than nothing.
Or maybe not.
Taking the Cure
Chapter 30
IT TAKES more than a week to get tetraben-azine, or TBZ, because we have to get it from Canada. Dr. Holmes made me think that it was an experimental drug, but a Web site I check says it’s been used in countries outside the United States since 1960.
It turns out it’s an antipsychotic created to treat schizophrenia, just like Risperdal.
Here we go again.
Mom calls Dr. Pressler to check on her experience with TBZ but gets her answering machine. By now, Dr. Pressler has moved too far away for us to see her in person, but she’s always there, returning our calls quickly, sharing results of medicines she’s prescribed for her thousands of Tourette’s patients, and telling us about new medicines.
The first night, I take my prescribed dose and fall asleep with an uncomfortable new feeling. My body is restless almost immediately, and I toss and turn continuously to find more comfortable positions. My tics are worse, too, but the high level of agitation is the bigger problem.
The next day, after we report my symptoms to Dr. Holmes’s assistant, he tells us to
raise
the dose.
That night, the restless feeling increases so much that my whole body starts bouncing around the bed, kind of like the girl in
The Exorcist.
As the agitation gets worse, I plead with my mother to make it go away. She tells me to try to wait it out, and I curse at her because she won’t help me.
I curse at my mother?
There’s another person inside of me, taking over.
She gives me a second dose of Benadryl to help me sleep, but two hours later I’m still jerking and twisting and bouncing up and down. I’m exhausted from the meds, but it feels like there are a thousand fire ants in my bloodstream. I want to jump out of my skin.
Another hour passes, and it seems like forever. I take a third dose of Benadryl and some extra Risperdal. Between the heavy sedation and all the energy
J.A. Konrath, Bernard Schaffer