Yesterday was day ten ... again. I wrote—cynically, suspiciously—in the journal the night before last that I thought Calvin’s day was “too good to be true.” Unfortunately, I was right.
Since May, amidst several drug increases, Calvin remains on a nine to eleven day cycle between seizures, and yesterday proved no differently. He’s been taking half of a bubblegum pink horse-sized amoxicillin pill twice each of the past four days—in addition to his regular battery of other drugs—for a mild ear infection, the cause of a seizure several days prior. But on Monday, his balance had improved and his mood was temperate, though he was unusually placid in the high chair waiting for dinner—you know, the calm before the storm.
Yesterday at naptime, a few minutes after falling asleep—and after some unusual laughter in the johnny-jump-up earlier—Calvin had a two-plus minute convulsive seizure. It was milder than most, but seeing your kid jerk and shake and not breath for minutes isn’t a stroll in the park, more like wandering down a dark alley, a vicious thug lurking in the depths ready to clobber the living daylights out of you and your kid only to leave you both there to wither and ... die?
So, as Calvin’s nurse was upstairs watching him like the hawk that she is while he fell back into a deep coma-like slumber, I was downstairs Googling drugs—anticonvulsant drugs.
Calvin takes Clobazam, a benzodiazepine derivative related to Valium and available to us from Canada at about a dollar per pill. He takes two and three-quarters of the little white gems each day. The other is Banzel, brand name for Rufinamide, of which he gets six, three with breakfast (the breakfast of champions) and three with dinner. So now, what with three reliable, intense, long convulsive seizures each month, what might be our next drug of choice? They all cause headache, dizziness, double and blurred vision (Calvin’s vision is already off the charts terrible) somnolence, loss of balance and coordination, nausea, fatigue and memory problems just for starters. The drugs are probably why he’s remained on the verge of walking autonomously for four-and-a-half years. His balance gets no better, really, I think he just gets stronger and more adept at catching himself, though that isn’t saying a lot because nearly every day he goes down, and sometimes pretty hard, and sometimes right on his noggin, even though we hold him.
I email his neurologist, her nurse and her dietitian and I copy Michael and Calvin’s pediatrician and his nurse. I explain the circumstances. I offer possible options from what I have researched and I wait for their advice. It’s been the same cycle for five-and-a-half years, and I cringe when I think of having to feed my precious little first-grader his ninth antiepileptic drug. I fear an allergic reaction, a lethal reaction, a developmental reaction, a behavioral reaction, a paradoxical reaction. But with no other choice beyond more seizures I push the button and send.
So I sit here quietly, in the calm before the storm. The only thing I can do is to get the advice and go with my gut. Neurology is a practice—a game of chess—hard to see the consequences of any move you make, no matter how carefully you do it. Easy to back yourself into a corner—down a dark alley—your only hope in hell is that you’re wearing your kick ass boots and that it’s not a sinister bricked-up dead end street.
Since May, amidst several drug increases, Calvin remains on a nine to eleven day cycle between seizures, and yesterday proved no differently. He’s been taking half of a bubblegum pink horse-sized amoxicillin pill twice each of the past four days—in addition to his regular battery of other drugs—for a mild ear infection, the cause of a seizure several days prior. But on Monday, his balance had improved and his mood was temperate, though he was unusually placid in the high chair waiting for dinner—you know, the calm before the storm.
Yesterday at naptime, a few minutes after falling asleep—and after some unusual laughter in the johnny-jump-up earlier—Calvin had a two-plus minute convulsive seizure. It was milder than most, but seeing your kid jerk and shake and not breath for minutes isn’t a stroll in the park, more like wandering down a dark alley, a vicious thug lurking in the depths ready to clobber the living daylights out of you and your kid only to leave you both there to wither and ... die?
So, as Calvin’s nurse was upstairs watching him like the hawk that she is while he fell back into a deep coma-like slumber, I was downstairs Googling drugs—anticonvulsant drugs.
Calvin takes Clobazam, a benzodiazepine derivative related to Valium and available to us from Canada at about a dollar per pill. He takes two and three-quarters of the little white gems each day. The other is Banzel, brand name for Rufinamide, of which he gets six, three with breakfast (the breakfast of champions) and three with dinner. So now, what with three reliable, intense, long convulsive seizures each month, what might be our next drug of choice? They all cause headache, dizziness, double and blurred vision (Calvin’s vision is already off the charts terrible) somnolence, loss of balance and coordination, nausea, fatigue and memory problems just for starters. The drugs are probably why he’s remained on the verge of walking autonomously for four-and-a-half years. His balance gets no better, really, I think he just gets stronger and more adept at catching himself, though that isn’t saying a lot because nearly every day he goes down, and sometimes pretty hard, and sometimes right on his noggin, even though we hold him.
I email his neurologist, her nurse and her dietitian and I copy Michael and Calvin’s pediatrician and his nurse. I explain the circumstances. I offer possible options from what I have researched and I wait for their advice. It’s been the same cycle for five-and-a-half years, and I cringe when I think of having to feed my precious little first-grader his ninth antiepileptic drug. I fear an allergic reaction, a lethal reaction, a developmental reaction, a behavioral reaction, a paradoxical reaction. But with no other choice beyond more seizures I push the button and send.
So I sit here quietly, in the calm before the storm. The only thing I can do is to get the advice and go with my gut. Neurology is a practice—a game of chess—hard to see the consequences of any move you make, no matter how carefully you do it. Easy to back yourself into a corner—down a dark alley—your only hope in hell is that you’re wearing your kick ass boots and that it’s not a sinister bricked-up dead end street.
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| Calvin after his seizure, photo by Stacey Morse |
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