day five

Twenty-eight months into Calvin's withdrawal from his benzodiazepine, clobazam, aka Onfi, Calvin is definitely having more partial seizures than before we began the wean. The good news is that in the face of a ninety-plus percent reduction in benzodiazepine, his number of grand mals is holding pretty steady at just over four per month. It's the partial seizures that are becoming more frequent in the days following and in-between the grand mals. The increase isn't a huge one compared with two years ago, though it is substantial compared to several years ago when he went long stretches in between seizures but was a complete and utter raving lunatic most of the time on high doses of three powerful anticonvulsants, including an adult dose of clobazam (Calvin was only ten and weighed less than fifty pounds at that time).

Three summers ago, when Calvin's behavior and sleep were at their worst, and when I was in tears most days as a result, Michael and I decided it best to take Calvin off of his benzodiazepine and begin replacing it with cannabis oil. It was probably one of the best decisions we could have made. All it took was taking a serious look at the risks versus the benefits to his quality of life.

So, although Calvin is having several grand mal seizures every month, plus a half-dozen to a dozen partial seizures, his grand mals are now—at least for now—only at night where he is safe. His body is calmer, he is less hyper, not as loud and crazy, sleeps better, except when he is in the worst thralls of withdrawal, and seems to be learning to express himself better. All very good things.

What is daunting is that Calvin has been in this active state of benzo withdrawal for over two years and we have at least one year to go. What is exciting is the prospect of his seizures possibly diminishing once he is free and clear from the miserable drug.

So, though it has only been five days since Calvin's last grand mal, I remain hopeful. We've come to a better understanding of how best to do the benzo wean and avoid its most harmful effects—that being status epilepticus, hospitalization and nights of physical agony.

And so, we soldier on, in hopes of a better life for our family and our boy. Thank you, cannabis oil.

Photo by Michael Kolster

1 comment:

  1. Love and hope to all three of you. Thank you for continuing to share.