5.01.2017

holding onto hope

I'm trying hard to hold onto hope. After three years of an ongoing benzodiazpine withdrawal—until now yielding no significant uptick in monthly seizures—Calvin has begun having quite a few more these past two months. His average monthly number of grand mals since April of 2014 had held at around 4.3, but in March and April this year he suffered six each, and in April he had thirteen obvious partial seizures.

Recently, I got Calvin's report card stating that he has missed twenty-nine days of school, and has been tardy more than a handful. His absences—which amount to a total of six weeks of missed school—are largely due to seizures. Last month he suffered seizures on fifteen of thirty days.

When resulting despair begins to set in, I remind myself that not long ago Calvin went twenty-seven days without a grand mal. And so, as we inch his benzodiazepine toward a goal of zero (Calvin is now on 1.75 milligrams per day, down from a high of thirty-five three years ago) I try to remain optimistic that he can repeat a good stretch of seizure-free days.

Another consolation to my sorrow and dread is that I still have a few tricks in my back pocket. In other words, we haven't run out of options to try to reduce our boy's seizures. This weekend, I heard a Radiolab segment about treating mice with lactobacillus to increase GABA, the body's chief inhibitory neurotransmitter responsible for reducing neuronal excitability. GABA is what Calvin's brain is craving during benzodiazepine withdrawal. It made me wonder if doubling his morning probiotic, rich in lactobacillus strains which promote GABA, might mitigate some of his seizures. So I increased Calvin's probiotic this morning. If that doesn't work, I'll likely try switching his magnesium citrate supplement to one that has the ability to cross the blood-brain barrier and may also help regulate the uptake of calcium, which might have a positive effect on his seizures. Something else I've tried several times is to give Calvin a few drops of concentrated THC tincture when I suspect he's having partial seizures at night, and also during grand mals, to thwart further seizures. It's too early to tell for sure if that method is working, but it shows promise. Then, if none of those options pan out I'll likely increase his CBD oil or switch to an oil that has a higher ratio of THC to CBD, which Haleigh's Hope offers, considering some children find relief from their seizures using a bit of THC.

So, we still have some ammunition to hurl at Calvin's seizures during this painful and ridiculously protracted benzo withdrawal which, regrettably, is happening during puberty, a time when seizures often increase anyway. But I'm pretty hell bent on getting him off of the class of drug that he's been on since he was three.

Having said all that, despite the fact that Calvin is having a handful more seizures than he was three years ago, he is a different kid altogether, more, in ways, like he was before the benzos and other antiepileptic drugs. Before we began the wean and before we started him on cannabis, he used to wake crying every morning and I wondered how I could tolerate it much longer. He used to be awake for hours in a single night. He stopped being able to sit calmly on our laps while we read him books. He flailed and shrieked every time we changed his diaper. He coughed and sputtered and screamed much of the day. He pulled my hair. He shrieked every time we got in the car and most of the time we drove. He was disruptive in our favorite cafe. Now, with over ninety-five percent less benzodiazepine coursing through his veins, he is far calmer, more patient, more loving, more focused and, frankly, infinitely more tolerable. I'd even go so far as to say that, for the most part, he is a joy to be with again, and much easier to take care of than before.

So, I'll keep holding onto hope that we can get Calvin safely off of the benzo and be rid of them forever. And I'll keep holding onto hope that someday we'll find a way to stop his seizures while still keeping our sweet, happy, mostly calm, boy.

Before the benzos (and other drugs.) Photo by Michael Kolster

7 comments:

  1. Our favorite picture! Our fingers are crossed for a good month. ❤️Gma

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  2. What a beautiful photo. What a beautiful boy.

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  3. We surely wish you good luck in this campaign, It's worth the struggle and the impressive effort you put into it. Not too many of us can think through the complex variables and find the threads worth following, so my hat is off to you. Way to go, Christy!

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  4. Beyond impressed by your knowledge and perseverance. Holding hope for you and your sweet boy from VA.

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  5. I love that photo and I love you. We need to talk. As always, we are living nearly parallel lives in some respects.

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  6. He's so cute! It's amazing what parents have to learn to give their children their best chance. I'm sure you've learned way more than you ever imagined about benzos and cannabis. I'm learning a lot about cannabis as well and we tinker with it as well. I'm so glad it's helping.

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