10.25.2017

new day

My boy enjoyed a decent stint—nineteen days—between seizures of any kind. Alas, I pretty much knew it would come to an end. Last night at midnight he suffered a grand mal. It was notably less convulsive than most and, unlike other times when he has had a seizure that early in the morning, he didn't have any more. I attribute both facts to my new homemade concentrated THCA tincture that I had given to him at ten, and right after the seizure, then again at three a.m.

At five-thirty, Calvin woke to a low-grade fever, so perhaps he is getting ill, which lowers his seizure threshold. It is possible, however, that he has developed an infection from an injury he sustained at school last friday. As the radiology report stated, he suffered a "relatively large ankle joint effusion," an injury that his amazing orthopedist, Dr. Vincent Oliviero, explained is akin to an adult sprain, though in a child involves the growth plate making it prone to infection. Probably, though, Calvin is simply coming down with some sort of cold.

My plan, now that Calvin had the expected seizure, is to switch CBD oils from the 20:1 CBD:THC he has been using for three years to a 15:1 ratio, both made by the folks at Haleigh's Hope. The efficacy of the first one is unclear, but I've been hesitant to remove it during Calvin's benzodiazepine wean because a) it is best to limit variables, and b) in case it might be helping. Several weeks ago we reduced his CBD oil by a third hoping Calvin's complex partial seizures would decrease, and they did, though that could have been the result of having removed his B6 vitamin which had reached toxic levels. In any case, I figured trying a 15:1 ratio of CBD:THC might help improve his seizure control. And, so as to not be confused by too many variables, I will refrain from giving Calvin the concentrated THCA tincture I began giving him at night seventeen days ago, so that I can assert whether the new CBD oil ratio will help his seizure control. Plus, it would be better for the entire family if I didn't have to wake up to give Calvin medicine every night for the foreseeable future. Does that make sense?

In the meantime, I'm pleased with Calvin's progress this month—only two grand mals and three complex partial seizures thus far, which is significantly less than any month this year. I'm also grateful for his calm and content behavior, his number of smiles, his decent balance, his overall improved sleep, all in the face of an ongoing benzodiazepine withdrawal!

So, today is a new day. The earth is getting a good and overdue soaking. The sunrises and autumn colors are brilliant, the temperatures mild. I'm hopeful for what the future might hold.

Yesterday's pink sunrise, no filter.

10 comments:

  1. Your writings are an amazing testimony to your love! Hope Calvin feels better soon

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  2. How much longer do you expect the benzo withdrawal to take? It's very interesting to read about your successes with CBD and the others. I'm so hopeful for you and Calvin and Michael.

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    1. he should be off of itt by end of february.xo

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  3. Do the tinctures from CBD oil have half life's if so what is it? It sounds like it is both a rescue med and preventative too. What time of day do you give Onfi? Keppra or any other antiepileptic med? I see episodes at the same time nightly and wonder what comes into play to have seizures at such similar times when episodes strike? For instance no seizures during main part of day?

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    1. yes, cannabis is thought to have a half life. i think the common thought is that its effects last about 4 hours. that said, i believe at least some of its cannabinoids remain in the body's fatty tissues for weeks. i see the best effects from a thca oil. not sure if cbd is helping or not. i give calvin onfi first thing in the a.m. around 5:30 and at 5:30 at night. i give keppra first thing in the morning, at lunch and at bedtime around 6:30. i do not usually give any cannabis oil during the night which is why i think calvin has most of his seizures in the very early morning. he stopped having grand mal seizures once we reached his current dose of thca, which was before we started him on cbd. sleep comes into play, whether at night or napping. for reasons unknown to me, seizures are common just after dozing off, while sleeping and when waking up.

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    2. oops, he stopped having DAYTIME grand mal seizures once we reached the current daily dose of thca. he still has them at night.

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  4. For me playing with time changes of Jed's has been less effective then manipulating dose.

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  5. Thank
    You for responding!!!
    Is there such a thing as slow release cannibis maybe in pill form?!

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    1. there are patches available for thc but not sure about ones with cbd or thca. they cost between ten and twenty bucks, so not realistic. there are no plant-based pharmaceuticals on the market yet and even then, they usually don't develop time-release drugs at first and when they do, it is rare.

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