august update

We've had a pretty shitty week. A dear friend took his life. Calvin's kick-ass nurse gave her notice due to stresses with the agency. Because of Calvin's grand mal, yesterday we had to cancel a rare mini-vacation (it has been years and years since we've spent a night away from home) to join visiting friends at a lakeside cabin in Blue Hill. Calvin has had seizures—all but one of them partial complex seizures—on six of the past eight days, including three this morning.

So as I sit on Calvin's changing table as he rests in his bed, rather than romping in the garden with the sun on my shoulders and the wind in my hair, I'll give you a seizure update, and at least I can say I've been productive.

Between July and August, Calvin went forty days without any grand mal seizures after having begun giving him Palmetto Harmony CBD oil in late June. This month, Calvin went thirteen days between grand mals, and while not forty, it is still a good run considering a few months ago he had been having grand mals every couple to several days and, on two separate occasions, three in fifteen hours.

Otherwise notable is his recent increase in monthly complex partial seizures. We had seen them diminish, going from the low teens down to two or three soon after discontinuing the benzodiazepine Onfi in late February, and also after stopping a previously-used CBD oil.

On the face of things, it appears we may have traded grand mals for partial complex seizures: in June, Calvin had six grand mals and three partial complex seizures; in July he had three grand mals and four partials; in August he had two grand mals and twelve partials. What has remained the same since February is the number of days in any given month that he has seizures: six to eight.

The recent uptick in complex partial seizures leaves me in a quandary. I am wondering if Calvin is having more of them because he is taking too much CBD (granted, he is only taking 30 mgs/day which is not that much for a boy who weighs less than sixty pounds) or if it is because we reduced his morning and bedtime THCA oil. In making simultaneous changes, I muddied the waters, and as a result it isn't clear what I should do next.

While admitting that I hate his complex partial seizures nearly as much as his grand mals because of their stealthiness and their propensity to come in clusters sometimes leading to grand mals, I was somewhat comforted when reading recently that it is the frequency of grand mals that is the primary risk factor of succumbing to SUDEP: Sudden Unexpected Death in Epilepsy. A new study finds SUDEP occurring in about one in every 1000 people with epilepsy.

Since I don't know what is causing the recent uptick in partial seizures, I think it best to sit tight for a few days or more, keeping Calvin's current doses where they are. Though challenging, I'll try not to act too hastily, try listening to my gut. Maybe I'll try musing on the birds outside my window, the trees swaying in the breeze, the sun on my back if I can get outside, the butterflies, the stars.

Photo by Michael Kolster

1 comment:

  1. Trying to apply scientific analysis to treatments for Calvin must be like the proverbial needle and haystack. You have incredible courage and strength in your efforts, and I applaud you. Wish I could help!