night spells (with video)

It appears they’ve returned, the ones I so fear, the night spells. As far as I know he hasn’t suffered them in years, so to have them two nights in a row, both around three a.m., brings me down, to say the least.

I woke to the sound of Calvin making a sort of swallowing, smacking noise. I grabbed the mini flashlight and shined the dim beam on his face. He did not respond. I turned the light on in his room but he did not squint. Instead, his eyes remained fixed and wide open, though not appearing to see. “Michael,” I called, “I think he just had a seizure,” and when he came I pointed out the wet spot on the sheet where Calvin’s face had been, and the familiar, feeble way he was trying to suck his thumb. So I crawled into bed with him, and for the rest of the night—both nights—I felt his body, snuggled into mine, shiver and shudder in fits and starts. We call them aftershocks.

He’s been sick with a cold and, a week prior, we’d eliminated one of his anticonvulsant drugs. It could be that the reappearance of these nighttime seizures are from withdrawal (a child in withdrawal? regrettably not his first time). Perhaps they’ll mellow out over time. Or maybe he has simply outgrown his dose of one of the other meds. Hard to tell, impossible, frankly. So we did what I hate to do, which is to increase one of his two anticonvulsant drugs, the benzodiazepine, the addictive one, the one that makes him drool and who knows what else. We aren’t prepared to try the medical marijuana yet. We still need to find the right strain, though we are well on our way, which means it might be weeks or months, at the most. In the meantime, though, I fear Calvin will have a seizure in the middle of the night that I don’t hear, that he’ll suffocate or succumb to SUDEP (sudden unexplained death in epilepsy) which is not as uncommon—especially for a boy like Calvin—as some recent media has portrayed.

And so we fill our little nine-year-old with more drugs that make him dizzy and fall off balance, that put him that much farther away from being able to walk without our assistance, that make him have headaches, nausea, insomnia and incessant drooling, not to mention what they might be doing to his organs, including his brain. I cut the pills that are nearly impossible to cut without crumbling, because the drug company discontinued the smaller dose pills that are easier for children to titrate and to take. I worry about his behavior, his contentment, his development. I remain on edge, always, because without much doubt, despite taking these drugs, Calvin will continue to seize.


  1. I hear you. It's all impossible sometimes, so many times, that I think (from experience) one must just sit with the impossibility and not so much nurture hope but believe, silently, that it's still there.

  2. I'm sorry. I know how devastating, heartbreaking, and frustrating it is. I hope the marijuana is ready soon. I want to hear all about that. Wishing it was legal in NY.

  3. How hard for that sweet, innocent child! And for you parents.....I wish we could help..... The only thing is we are with you in spirit....

    1. dear carol, being with us in spirit is a lot. xoxo