sunrise seizures, benzos, birds and cannabis

I hear the clock strike five just as I’m drifting off to sleep an hour after Calvin’s morning seizure. I’d seen it coming yesterday—his warm skin, red ears, flushed cheeks, willful dropping down, perceived malaise, unmistakeable seizure breath. I listen intently for signs of a second one, dreading my boy’s seizure scream, the tensing of his body, the violent spasms that wrack his body. But none come, which might mean the rescue THC cannabis oil we gave him has worked.

With my eyes shut, I listen to the first sounds of dawn coming alive in the trees: the soft, round coo of a morning dove, chirping robins, tweeting catbirds and the trill of a cardinal. Somewhere nearby I hear the hollow knock of a woodpecker and I wonder what kind it is.

I drag myself out of bed and call to Michael to help me change Calvin’s soaking diaper, pajamas and bed sheet. Our boy, who mostly seems such a little thing, is getting bigger, and I wonder how much longer we’ll be able to carry him when it’s necessary. As Michael changes Calvin's pajamas I head downstairs to get his clobazam, the benzodiazepine, which I’ve decided to give him early hoping to thwart a second seizure. As I draw it up in the syringe I think about the article I read yesterday, Is It Bedtime for Benzos?, remembering a few exerpts:

Among the many discoveries to result from this mapping is proof that benzos induce reward prediction activity in the brain and increase dopamine release. Just like heroin and cocaine. And yet, many patients continue to be told by their doctors that these meds have little to no downside.

and:

For decades, doctors have been setting people on a road to dependency and addiction by ignoring or downplaying benzos’ well-known dark side. It’s a dark side their profession has had plenty of time and cause to acknowledge and understand, because it’s one benzos share with their predecessor, the barbiturate family.

and:

Following a sudden withdrawal or even too-rapid taper, the brain thinks it’s being injured, so it marshals all these other mechanisms to try and mitigate these reactions,” says Dr. Madill. “Fatigue, disorientation, malaise, severe panic and startle reactions, nerve pain, muscle aches, short-term memory loss.

and:

Benzodiazepines impair the formation of new memories.

Upstairs, Calvin struggles as I syringe his benzo into his mouth and chase it with a little water. This last bit from the article, about benzodiazepines' affect on new memories, is as troubling as their addiction. Calvin has been on two benzos, clonazepam (Klonopin) and clobazam (Onfi), which are meant only for very short term use, since he was only three years old. He's eleven now and we've been weaning his clobazam for over a year with at least six months to go. I loathe to imagine the retardation of his learning process—his development—because of the benzos. How can a child develop skills if they can’t retain the knowledge imparted to them? There is no doubt in my mind that the seizure drugs, in particular the benzos, have caused more harm to my boy’s development than the seizures themselves and perhaps even more than his brain malformation itself. And what’s worse is that Calvin's developmental windows for learning things like speech have likely already closed, so even if we are successful in getting him off of his benzodiazepine without killing him (benzo withdrawal can cause life-threatening seizures even in people without epilepsy) he’s bound to see little developmental progress in their wake and will likely remain a non-verbal, severely impaired toddler forever.

In our bed, Michael snuggles up to Calvin spooning him as I watch the two of them close their eyes and fall back to sleep. He's a beautiful child—especially when he's sleeping or smiling and feeling good—with flawless skin, full lips, big blue eyes and a mass of shiny chestnut hair. Looking at him lying so peacefully there, you'd never know anything was wrong. But, as if the missing hank of white matter in Calvin's brain weren't enough to ruin our boy's capacity for doing nearly everything, the benzos have definitely sealed the deal.

Luckily, we're pioneering cannabis oils to treat his epilepsy and, thanks to the amazing medicinal properties of an herb that the federal government has falsely demonized for decades, today we are celebrating 300 days that Calvin has gone without having a waking, daytime seizure. For years he had those seizures every week or two, usually in the bath or at the dinner table. In that same time span, with the exception of one naptime seizure, all other seizures have been when he is asleep in the middle of the night or in the wee hours of the morning when songbirds and the pileated woodpecker with its blood-red crest, as it turns out, announces the break of dawn.

For other posts about benzodiazepines, click here.

Calvin with his Gpa, eight hours after his seizure.