riding the wave

At times he seems famished. At others, averse to eating altogether. My fourteen-year-old boy Calvin cannot tell me when he is hungry or thirsty. I have to guess, do trial and error, sit him in his chair to see if he wants to eat something. Even then, my boy is so restless due—I believe wholeheartedly—to his eleven years of taking benzodiazepines and the heinous and protracted effects of their withdrawal.

I wonder if we'll ever get my calm child back. I hope with every fiber of my being we do. But my sense is that my son has been ruined. Ruined less by seizures, I wager, than by pharmaceuticals, most notably the benzodiazepines which doctors prescribe so cavalierly—often ignorantly—for epilepsy, anxiety, muscle relaxation, and insomnia.

When Calvin was an infant, before he began having waves of seizures—at least obvious ones—and when he wasn't suffering from gastrointestinal distress or nervous system overload (he was born six weeks early with an idiopathic absence of a significant chunk of his brain's white matter) he was a calm child. He nursed peacefully, sat in Michael's lap happily, was content during walks in the stroller, sometimes bundled up against twenty-degree temperatures, sat patiently in his bouncy chair as we fed him, laid still in bed with us and on blankets in the summer shade. But at age two, when the seizures began, so did the meds. And when the meds began, as early as his first dose we saw him change and morph into the amped-up child we see today, and most particularly since the advent of his first of two benzodiazepines, Klonopin, when he was just three years old.

Michael and I are trying to ride the somewhat recent wave of more frequent grand mal seizures of late (he had one last night on day five), plus a string of days watching Calvin perseverate—finger snapping and rubbing, repetitive humming, jaw clenching, sun staring, disengaging—hoping he is "simply" going through a bout of benzo withdrawal that will soon dissipate. But it is scary to see Calvin in this kind of place; I worry that he'll get stuck and never change or improve, dread that my kid will never get back to his baseline functioning. After all, the drugs have ruined him before, kept him from returning to his best self behaviorally; it has been over a decade since I've seen and held that calm child.

But what do I know? Perhaps he is exhibiting sub-clinical seizure activity. Maybe he has a tummy ache. What kind of role are pubescent hormones playing? Somehow, though, I doubt these are what's at major play; my gut tells me the drugs are the culprit. In any case, we'll just have to ride this wicked wave and see.

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