bat shit crazy

For an hour and a half straddling midnight—Michael several hours north—my son sat up in his bed and banged his head on its padded side every few minutes. When he did, wearily and perturbed, I got myself up (perhaps as many as two dozen times) to lay him back down and cover him up. Each time I fell back in bed, Nellie came over so that I'd pat her on the head. Exasperated, I finally checked and changed Calvin's diaper, took his temp which was unusually low considering how warm his skin felt, then crawled in with him.

The past three days Calvin has been bat shit crazy much of the time—shrieking and hollering, flailing, manic in the bath, ridiculously restless, crying at times for no apparent reason. As I write this I understand that I, too, have been a lunatic of sorts—hollering and shrieking at times in response to his maddening behavior, his agitation, his immense stubbornness to do what or go where I want him to. His obstinance makes it difficult and sometimes impossible to pass a half-block radius when on foot. He has a mini tantrum every time I try to take him to the health food store or to the donut shop for a cruller and a cup a joe, even though he's been to these places several times before.

I wonder if, when he is free of his benzodiazepine, he'll evolve to a place of calm and compliancy. I wish I knew what impels him to drop down. Is he fatigued? Do his legs or knees or feet hurt? Is he dizzy? Weak? Confused? Anxious? I really have no idea.

Three years ago I wrote a post called dear dr. rx. In it I describe my frustration with neurologists' apparent cavalier way of prescribing benzodiazepines. Gradually, the more I read about adults' experience of the terrors of benzodiazepines and their withdrawal, the more I'm convinced of physicians' ignorance of their side effects, dangers, and proper withdrawal, and the more my frustration grows into outrage. We've been weaning Calvin's benzodiazepine clobazam, aka Onfi—which was prescribed, in part, to help him get off of another benzodiazepine, clonazepam, aka Klonopin—for over three years; we've got nine or more months to go until he's rid of it. I've little doubt benzos and their withdrawal are what have stunted Calvin's learning and cause his mood swings, his malaise and misery. I've no idea who my kid would be without having taken them for nine of his thirteen most formative years. Suffice to say I believe that very child has been stolen from me, and I'll never get to know him or see what he might have become.

Having said that, I have heard benzos work for some without causing habituation, and I am aware that they might be one of few options for some of the most serious epilepsy cases.

This morning, after having given Calvin a dose of THC around midnight when he was so restless, he woke to a grand mal at six. I've little doubt that if I'd repeated a dose of THC around two or three he may not have had the seizure at all. He's slowly getting back to baseline as the morning wanes. Michael is on his way home. Calvin has only 1.5 mgs of clobazam to rid himself of. The sun is shining. The peonies are fragrant and in full bloom. Friends are stopping in to bring me groceries, sit and sip coffee with me and walk the dog. The kid is calm and the bat shit crazies in the seizure's wake will hopefully take a hiatus for a while.

Photo by Michael Kolster

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