summer swelter, seizures, clobazam and cannabis

By evening, everything had melted in the summer swelter—the butter, the plants outside, me—and the glass wall barometer’s blue water dipped well below normal. I was in the middle of mixing myself a bourbon with ginger beer on ice before making Calvin’s dinner, and Michael was beginning to cook ours. Calvin was screeching and spinning in his johnny-jump-up, though not all together happily. He’d had an off day, whining at every turn. When he became silent, I peered around the refrigerator to check on him and found him dangling, jackknifed in his jumper like some neglected marionette, his contorted limbs jerking in rhythm. We dropped what we were doing and ran to his aid, where we had trouble prying his stiff body from the jumper, its padded fabric crotch clamped between his rigid legs.

I couldn’t really tell if or when the seizure was over; Calvin’s color came back but his face, fingers and legs randomly twitched for minutes. I gave him several drops of my homemade THCa cannabis oil, which, after a couple of minutes, seemed to assuage the tiny spasms. It was nearing five-thirty, so I decided to give him his nighttime dose of benzodiazepine early, happy that he was able to swallow the thick, milky liquid before drifting into a post ictal sleep.

It had been thirty-five days since Calvin’s last dinnertime seizure, the third or fourth time he’s gone that long between them since shortly after starting the THCa cannabis oil. Before that he’d been having them every five to fifteen days. And though we’ve weaned him off of 40% of his benzo, clobazam, we aren’t seeing a definite increase in overall seizures. However, the seizures have mostly migrated to just before dawn, likely because we don’t give him cannabis oil in the middle of the night—at least not yet—for fear he’ll struggle and or aspirate. Therefore, he’s still having three to five perceived seizures every month, though they have flattened, calmed.

School starts tomorrow and I am welcoming the quiet time to myself. Delightedly, Calvin will have the same teacher and the same one-on-one that he did in previous years. It has been a bit of a rough summer, in that the home health agency never found us a second nurse to fill Calvin’s allotted hours, without which I have had little time to do things like garden, write or ride my motorcycle (which is thusly for sale) or even to wash dishes or do laundry. Luckily, the addition of THCa cannabis oil and the significant reduction of benzodiazepine have both seemed to improve Calvin’s quality of life and ours. For the most part he is less stubborn and has much better balance. His drooling has decreased and the persistent rash on his chin has mostly disappeared. His stamina and his willingness to walk hand in hand down the street or in the grocer or at the fair or at the park has markedly improved, and his hyperactivity has cooled some. Regrettably, it will be another year before he is completely off of the drug since a painfully slow wean is the only safe way to come off of a benzodiazepine.

The other day Michael and I had a good conversation about epilepsy, pharmaceuticals and cannabis. We agreed that, if coming off of pharmaceuticals could improve Calvin’s development enough for him to learn a handful of words, for example, we’d exchange that for a few extra seizures. We wondered why not starting him on antiepileptic drugs was never offered as an option to us when he was first diagnosed and why we didn’t consider it ourselves. We wondered why no neurologist talked to us in depth about the risks of long-term use of benzodiazepines. We complained that no neurologist told us that weaning clobazam would be easier if Calvin took the liquid form reducing by small increments as opposed to large decreases in unevenly cut pills. We realized that we are starting to think that Calvin’s seizures may never abate and that an improved quality of life should be the goal. As long as he has epilepsy, no matter how many seizures he has, he is at risk of dying from SUDEP, sudden unexplained death in epilepsy, so why pump him full of debilitating drugs that make him feel like shit if we don’t have to? I say this knowing that not all children with epilepsy fit this profile and knowing full well that things with Calvin could suddenly and dramatically change, particularly with puberty on the horizon, causing us to reconsider this tack.

Thankfully, at least for now, the cannabis oil seems to be helping, a lot. It’s just too bad that there aren’t more neurologist and legislators out there willing to inform themselves of its benefits, to champion its use, advocate for its research and support its legalization at the federal level. I’d bet if their children had epilepsy, they would do it all in a heartbeat.

Calvin in a daze after his most recent seizure