10.20.2014

so long benzos, hello cannabis

For years my gut has told me what my mind now sees as a truth: my ten-year-old son Calvin has, for years, been suffering a paradoxical reaction to at least one of his antiepileptic pharmaceuticals.

My kid was only three years old when his (now former) neurologist prescribed his first benzodiazepine, clonazepam, brand name Klonopin. It was meant as a bridge drug, to be used only for a couple of weeks while he titrated to therapeutic levels of two other anticonvulsants, one of which, if increased too quickly, can cause a life-threatening rash. Instead, Calvin remained on Klonopin for over three years and the only way he came off of it without suffering debilitating withdrawal symptoms, including scores of extra seizures, was to transition to a benzodiazepine derivative, clobazam, brand name Onfi, which he has been taking for over four years.

While on extremely high doses of three anticonvulsants, Onfi, Banzel and Keppra, Calvin’s behavior was often off the wall. Everything was difficult: sleep, changing his diaper, feeding him, walking him around, soothing him, even driving in the car. When he became anorexic, his behavior barely tolerable, I started weaning him from the Banzel and began investigating medical marijuana. After a year of research and persuading his neurologist to sign a letter of recommendation for the treatment (his pediatrician was already on board) I was finally ready to give Calvin a homemade THCa cannabis oil. And though Calvin’s appetite had improved after stopping the Banzel, his hyperactive, irritable, manic behavior remained off the charts. I knew in my gut that at least half of his problem was the benzodiazepine, which, though it is a sedative, can cause insomnia, restlessness, headaches, dizziness, irritability and mood swings. So, shortly after I began giving Calvin the cannabis oil—which seemed to spawn immediate improvements in his sleep patterns, focus and mood—I began weaning him from the Onfi.

Six-and-a-half months later Calvin is taking less than half the amount of Onfi he was taking last April, and it shows.                                  
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It had been a while since I’d taken Calvin to the grocery store by myself. We entered, grabbed a cart and he began to push. He didn’t try to bite the handle. He pushed the cart all by himself for a spell. He stood holding onto the cheese case while I walked a few feet away and grabbed some pesto. While I tackled a thirty-pound bag of dog food he stood holding the shelf for a while, then began walking down the aisle all by himself. I wasn’t too fearful as he stepped beyond my grasp because it has been weeks, if not months, since I’ve seen him trip or fall off balance.

By the time we got to the checkout line Calvin was a little impatient. The cashier, one of the few I don’t know, leaned over to me.

“Next time, if you need, there are some special carts you can put him in,” he said kindly.
“Oh, thank you,” I replied, “but I like to make him do as much as he can by himself.”

“Well, it’s there if you need it,” he added with a smile, and I thanked him again.

The other day the nurse’s supervisor came for his biannual visit.

“It’s like I’m seeing a different kid,” he said, remarking on Calvin’s growth, his good posture, improved balance and his calm nature.

A few days later Calvin's teacher drove by just after he had gotten off of the bus. I waved her into the driveway and she jumped out for a hug and a short visit.

“Thank you for what you are doing for my boy,” she said, and I thought I noticed a slight tremble in her voice.
“I used to dread changing his diaper,” she went on, “and now I don’t.”

We both marveled at how much calmer Calvin is on the changing table and how much his balance has improved. She told me how well he focuses on songs, sits still in class and is quieter.

“It’s the benzo,” I said, referring to the relative lack of it in Calvin’s bloodstream, and I lamented that it is going to take another six to nine months to get him entirely off of it safely and without causing him too much suffering from withdrawal. And it's the cannabis, I realize, that is allowing us to wean the benzo.

We gave each other another hug and Calvin walked up the steps with a smile on his face because I’d praised him for doing such a good job.

Though it is going to be a long goodbye—which I loathe—so long benzos, hello cannabis!

Calvin in 2010 after having weaned completely off of Klonopin and having just begun a tiny dose of Onfi. Notice he is not wearing a kerchief around his neck, because benzodiazepines cause excessive drooling.

6 comments:

  1. Congratulations! You all deserve to bask in this progress! Here's to all the beautiful milestones to come.... xx

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  2. This is taking the patience of saint, to quote a phrase!

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  3. Yay for marijuana! Yay for mom and yay for Calvin! Sounds wonderful and sounds like a lot of work.

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  4. So, so great and an inspiration. I am struggling with Sophie -- haven't done a wean in several months, and we aren't seeing the good seizure control like we did earlier. We're still waiting on the 30:1 ratio stuff, and I'm just hoping that'll do the trick. In the meantime, I've toyed with the idea of trying THCa again, but I didn't like what it was doing to her the first time, so I'm hesitant. I would love your thoughts --

    But just WOW on this update!

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  5. Replies
    1. anonymous, what do you mean "its cbd not thc?" what are you referring to? the oil i make is rich in thca and has little to no cbd.

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