11.30.2015

onto something: cannabis and gaba

Seven minutes had passed by the time we saw the world flood back into our son’s eyes, seven miserable minutes until we were sure his seizure was done. Even after all these years it never gets easier to see him get sucked into an epileptic vortex.

At bedtime, having sensed the looming fit, I’d given Calvin two times his normal dose of homemade THCA cannabis oil, which seemed to postpone the seizure’s onset until after midnight, though didn’t halt its approach. When the convulsing finally stopped, I gave him another full dose, squirting tiny bits into his mouth between swallows. Thankfully, the oil seemed to prevent a subsequent attack.

Every time Calvin suffers more than one seizure in a single night I try using a new strategy, hoping to solve the puzzle, escape the conundrum, thwart the assault. Several daily doses of THCA oil appear to work well to curb his daytime seizures to a great extent—he has had only one daytime grand mal in 451 days. Sadly, though, this month has been a bad one for our boy, having had seven grand mals at night and a cluster of about a dozen partials, making it his worst month, seizure wise, in years.

Despite this setback (I should emphasize here my suspicion that it’s due, at least in great part, to a difficult benzodiazepine withdrawal) my husband and I remain hopeful. Since augmenting Calvin's cannabis oil regimen with various supplements in recent months—zinc to suppress the excitatory neurotransmitter glutamate and improve his body’s production of GABA, the body’s chief inhibitory neurotransmitter that Calvin’s body is craving due to the difficult and protracted benzodiazepine withdrawal, vitamin D to aid calcium absorption to help remedy Calvin’s osteopenia (which was perhaps caused by years on a failed ketogenic diet and/or side effects from some of his antiepileptic drugs), a daily probiotic to improve digestion, immune function and GABA production, and P5P (the active form of vitamin B6) to aid in the production of GABA as well—we’ve seen him make strides. Besides the disappearance of daytime grand mal seizures, we’ve seen Calvin have far fewer and less intense viruses and infections, seen him sleep better and lose much of his stubborn refusal, seen his stamina and behavior vastly improve, seen him drool less, seen his persistent chin rash disappear and, perhaps best of all, in the absence of spoken language he is now able to employ various signs, albeit some emergent, for the words hug, all done, more and eat—thanks to the hard work of his aide Mary.

In other words, Calvin is coming back to life again after some years as a lethargic zombie followed by many years as a raving lunatic, both phases I've no doubt resulted from the mind-warping pharmaceutical antiepileptic drugs, the main band-aids used for treating epilepsy.

It is too early to know, what with so little research, what cannabis might be doing to my son’s brain. But lets be honest, the disclaimers drug makers put on nearly every antiepileptic drug admit to as much—that they don't know exactly how they work. What I can say is this: Calvin usually has four or five grand mal seizures a month and, sometimes, a handful of partials—this in the face of an active withdrawal, having reduced his addictive benzodiazepine, clobazam, by nearly ninety percent. He is taking only one other antiepileptic pharmaceutical drug, Keppra. There was a time when Calvin was on the ketogenic diet plus very high doses of three or four pharmaceutical drugs at once, yet he was still enduring a dozen or more seizures most months, not to mention suffering the drugs' deleterious effects on his behavior, stamina, focus and development.

We're not out of the woods yet, but I’d say we might be onto something with this cannabis-GABA thingy; at least I can always hope.

Photo by Michael Kolster

4 comments:

  1. I am really hoping, too!

    I first discovered your site whilst researching cannabis oil treatment (for our 11 year old rescue dog who has canine degenerative myelopathy). I have gone back to the beginning and read through almost all of your posts. You and your husband are the most incredible parents and, to be entirely honest, I just don't know how you have managed to do all you have done and still do, day after day...and yet, it is also entirely understandable, because he is your son and you love him with all your heart and soul. You write incredibly beautifully and I think you are an amazing Mother to an amazing little boy.


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    Replies
    1. dear desiree,

      aw, shucks.

      xoxo,
      christy

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    2. Desiree has it exactly right.
      JK

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  2. How exciting that he is signing!That is huge progress and can be such an opening for him to communicate. Sorry it's been a rough month though.

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