how it goes

Calvin's brain squeezed off another grand mal seizure at ten p.m. on the thirtieth of June, bringing last month's total of grand mals to four, in addition to sixteen partials. Just last night he had two more—one at eleven p.m. and, despite having given him a bit of THC rescue med, another two hours later. After the second one, I was fretting about the Diastat rectal Valium which we gave him again, fearing if we use it too often he'll get addicted and it might lose its effectiveness. Dread washes over me when I think of that because it is not hard to imagine a seizure or cluster of them that won't stop, followed by a trip to the ER and ultimately, if no traditional rescue meds work, a medically induced coma. Sometimes, with refractory epilepsy, that's how it goes.

I'm not sure where to go from here. We are so close to eliminating Calvin's benzodiazepine all together (1.5 mgs per day down from a high of 35) and yet so far away (six to nine months or more to go). And though his grand mals still average just over four per month, his partial seizures during this benzo withdrawal, which is complicated by puberty, have for the most part gradually increased. My hope is that once we get him off of the benzo his seizure activity will eventually calm down. In the meantime, however, it appears we may have to wrestle with the reality of him suffering more.

While in bed with him I mulled over options in my head. I'll bring Calvin to the doctor to get weighed to see if he might have outgrown his Keppra dose. We'll also get some blood work done. I don't want to start him on a new pharmaceutical until he is off of the benzo, if at all. I'm loathe to increase his Keppra since he is already on a very high dose. He is taking no small amount of THCA cannabis oil, and though we could try increasing his CBD cannabis oil, it is expensive and not covered by insurance. I could try adding my homemade THC tincture to his bedtime regimen, but it is made from a hybrid strain, rather than a calming indica, and so not necessarily the best. Plus we hesitate to keep tossing more medication at our boy, and though cannabis is a plant, it is still a powerful drug.

This morning I had a thought: switch his Haleigh's Hope 20:1 CBD:THC oil to the 15:1 ratio; I've heard some children do better with slightly more THC in the mix, and it wouldn't cost us any more.

So, we'll hold off on the next reduction of Calvin's benzo, keep him at the same dose of Keppra to limit variables and try the lower ratio CBD oil (same dose) and see how it goes.

Photo by Michael Kolster