day nine, yet grateful

I didn’t completely see it coming. Yesterday, the only indications of an impending seizure, which I star in Calvin’s daily journal, were his warm red hands and ears, wanting to drop down at school, and the fact that he woke up at four o’clock and never went back to sleep. Typically, in the days preceding a seizure, besides increased fits of hysteria, the journal is marked with a dozen or more stars, increasingly so, as the seizure approaches. So when I heard Calvin rip into his grand mal this morning at 3:45 a.m., I was surprised and disheartened.

However, I am also encouraged. This month Calvin has suffered only three grand mal seizures. In November and December he suffered six and seven respectively, plus clusters of a dozen or so partial seizures in the hours and days after the grand mals. In an attempt to quash at least some of his seizures, I’ve employed a few strategies. The first was to double Calvin’s bedtime THCA cannabis oil hoping to eliminate the clusters of grand mal seizures he’d have in any given night. That tactic seems to have worked, limiting his nighttime seizures to just one. The other step I’ve taken is to slowly syringe his clobazam liquid into his mouth right after the seizure to prevent a subsequent one when he wakes back up. This seems to be working, too, at least for now. The last strategy I’ve taken is to temporarily increase his Keppra dose the morning of a seizure to thwart the clusters of partial seizures in the wake of the grand mals. So far, so good! If these tactics continue to work, and if the extra THCA at night also buys us a little more time between grand mals, Calvin will have about three seizures a month, which is slightly better than the number he had two years ago when he was taking nearly eight times as much benzodiazepine and before we began giving him cannabis oil.

We continue to wean Calvin from that benzodiazepine, clobazam, aka Onfi, albeit at a snail’s pace of five percent every couple-few weeks. At this rate he won’t be completely off of it until August at the very earliest; we started weaning it almost two years ago.

I'm also encouraged because Calvin is on the lowest amount of pharmaceutical antiepileptic drugs in years, probably since he was three. I’m hell bent on getting him off of the benzo, but we have to do it safely and slowly enough so that Calvin doesn’t suffer. I whole-heartedly believe that, without cannabis, this wean wouldn’t be possible without causing Calvin terrible side effects such as sleep disturbances, headaches, cramps and a huge increase in seizures. As it is, the kid's balance, sleep and behavior are all markedly improved over recent years, and for that, I am most grateful to cannabis.

Photo by Michael Kolster

No comments:

Post a Comment