how we roll

After pausing my son’s ridiculously protracted benzodiazepine wean for two months due to a pretty bad early November, Calvin went eleven days without any seizures; he didn’t even have any partial ones. The stretch felt luxurious and was sprinkled with only a few each of brief tantrums, manic spells and restless nights. And though he suffered a grand mal this morning just before four, he recovered well enough by ten o’clock to send him to school.

During the first two years of Calvin’s benzo (clobazam, aka Onfi) wean, we gradually eliminated thirty milligrams of his overall daily dose of thirty-five mgs (which is equal to an adult dose but okayed by a neurologist for a ten-year-old who weighed less than fifty pounds, despite the habituation and side effects we believed it was causing). Despite what we thought was a slow wean, Calvin suffered large spates of seizures, one hospitalization because of them, and several horrendous incidents of withdrawal in which he writhed in pain for hours at a time, looking at me through his tears as if asking me to make it stop. He was in such misery I thought he might be passing a kidney stone. Having slowed the wean as a result, however, and looking back, I now know those episodes were due to an overly swift withdrawal. So, we ratcheted back on the size and frequency of the reductions, and the painful spates disappeared.

In the past year we have reduced Calvin's daily benzo dose from five milligrams to just three, which is less than ten percent of his highest dose if we account for his weight gain. And though I’m proud and relieved to have gotten this far, and eager as ever to get him off, I’m afraid to eliminate it too quickly. So, at the current rate it will take at least one more year—for a total wean lasting three-and-a-half to four years—to get him completely off of the drug safely and comfortably.

In the meantime, I have adjusted his Keppra slightly up, as well as his THCA cannabis oil, both with hope of curbing his partial seizures at least. I’ve kept his CBD cannabis oil the same to limit the number of variables. Prior to this regime, in any given month Calvin experienced four to five grand mal seizures and a dozen—give or take a few—partials occurring on eight or nine days of the month, which means he's missed a lot of school. And while this is far from ideal, it is not too much worse than his worst months when he was taking ten times as much benzodiazepine. And of equal if not greater importance is the vast improvement we have seen in his behavior, sleep and focus while taking the smaller dose. And, hopefully, the increased Keppra and THCA will allow him to have more good stints like this recent one.

So, we will keep on truckin’, but we’ll stop when we need to, rest for a while, get our bearings, and then keep on truckin' again. With epilepsy, it's just how we roll.

If you cannot view the video below, you can watch it on You Tube here.

1 comment:

  1. Sigh. Sophie is back on a big dose of Benzo, but at least she's only on the one drug. It seems that Onfi and CBD/THC work ok together -- at least for now. I'm steeling myself for the tolerance to hit and then what?