10.13.2017

how it goes

We've passed another milestone. On Monday we reduced Calvin's benzodiazepine again—a drug he has been on since he was five years old—to a daily dose of just one milligram down from an all-time high of thirty-five. At this rate—weekly reductions of just two one-hundredths of a milligram—Calvin will be completely off of it next February just after his fourteenth birthday. We've been weaning it since he was ten.

Calvin had slightly more seizures the past seven months with the exception of May, in which he had fewer when we paused his benzodiazepine wean for a bit. May wasn't the first time we've seen fewer seizures when we've let up on the speed of his wean, so my hope is that once he's completely off of the drug, his seizures might abate. I'm not despairing too much because recently, I looked back to when he was on high doses of three drugs when he was having just as many grand mal seizures, if not more (they often came in clusters) every month.

A few weeks ago we took Calvin to see his neurologist. We've only gone to him twice in four years because I pretty much manage Calvin's treatment myself. I told him about Calvin's slight increase in seizures, adding that he has had only four or five daytime grand mals since reaching a therapeutic dose of THCA cannabis oil over three years ago. When he heard of Calvin's uptick in overall seizures, he asked if I might consider going back up on the clobazam. I said no, and told him why. Then he asked if I would consider the surgical installation of a vagus nerve stimulator. I said no, and told him why. Then he asked if I would consider Vimpat or Felbatol. I said no, and told him why. I've considered those options before, and for various reasons, none make sense for our family or our child, at least not now. About the only drug I might consider trying, knowing what I know now, is Epidiolex, since it is cannabis-plant derived. Even then, I am skeptical. But before I consider putting Calvin on another pharmaceutical, I want him off of the clobazam; no more three and four-drug cocktails for my child whose behavior, most of the time, is much improved compared with what he was like on high doses of too many drugs, back when we regularly had to peel him off of the walls. Yes, we have noticed a slight uptick in seizures, but he is calmer, more focused, usually sleeps better and has much better balance. It will be interesting to see how he does with zero benzodiazepine in his blood.

Another thing I have noticed is that his number of partial seizures, which have increased during the wean perhaps more so than the grand mals, has lessened after eliminating a B6 vitamin due to toxic levels, and after reducing his CBD slightly.

I've still got a couple of tricks in my back pocket that I hope might work to thwart at least some of Calvin's seizures. One is a concentrated THCA oil I recently made using half as much oil as my regular recipe plus one milliliter of organic cane alcohol per gram of cannabis resin. This is a concept I thought of after having analyzed the hell out of Calvin's regimen mining for alternative remedies. Fairly certain that my homemade THCA oil has virtually eliminated Calvin's daytime grand mal seizures, my logic was that if I can safely give him some during nights when I feel he has a seizure coming on perhaps I can eliminate some of his nighttime grand mals. The "tincture" is concentrated so I can give him less, and the added alcohol assists absorption so there is less risk of aspiration. I've given it to Calvin the past four nights in anticipation of a grand mal, and they haven't transpired.

The other tool is on its way in the mail—a lower ratio of CBD:THC cannabis oil we use from the makers at Haleigh's Hope. My thinking here is that perhaps a little less CBD and a little more THC might decrease Calvin's seizures.

I'll let you know how it goes.

Photo by Phoebe Parker

3 comments:

  1. Anxious to hear how it goes Christy. Good luck.

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  2. It's amazing what we do for our kids. Calvin is blessed to have you as his mama bear.

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  3. Sounds excellent. Fingers crossed.

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