1.17.2016

day five hundred

Today marks five hundred days since Calvin last had a daytime, conscious-onset grand mal seizure. In that time he has had only one daytime grand mal seizure, which occurred during a nap. This stretch is notable for several reasons. One, because for about three years he used to have a seizure between 5:00 and 6:30 pm every week or two or three, often while he was taking a bath, and we'd have to haul his stiff body out, dripping wet, and carry him to our bed as he convulsed. This long stint absent of daytime grand mal seizures also means I don't fret as much that he might have one at school and, as a result, my body and mind are far more relaxed. Also of note is the fact that during these five hundred days, we've weaned Calvin from ninety percent of his benzodiazepine, an addictive drug that in my opinion should never be prescribed for children except as a last resort, due to the body's tendency to habituate to the drug and the drug's proneness to negatively impact cognition, memory and behavior. My hunch is that benzodiazepines, along with other antiepileptic drugs, can have a permanent effect on development by slowing the learning process past windows of opportunity.

You may wonder what accounts for this nice hiatus. While Michael remains somewhat skeptical I have zero doubt that it's due to the homemade THCA cannabis oil I've been giving to Calvin for the past two years. As soon as we raised it to its current dose, his daytime grand mal seizures disappeared. He still has grand mal seizures at night every week or so, but he is safe in bed and we don't have to worry about moving him.

Unfortunately, this past year we have seen the return of brief daytime complex partial seizures which might be due to a variety of factors including puberty, growth spurts and overall weight gain, benzodiazepine withdrawal and/or epilepsy's tendency to morph and progress when not completely controlled. With this in mind I've taken two steps with the hope of lessening these seizures: I've doubled Calvin's bedtime THCA oil and increased his bedtime Keppra by 125 mgs. So far so good.

In the meantime, we celebrate five hundred days as a huge milestone marking an improved quality of life.

6 comments:

  1. A very interesting entry. I hear more and more good things about medical use of cannabis. Why can't we treat this plant like other herbs? In my opinion, it would be a good thing if the child didn't have to use benzodiazepines. They are so harmful in the long term. Blessings to both (all) of you!

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    1. I so agree. I don't understand why doctors will prescribe addictive medication that has devastating side effects, but are so closed minded to cannabis. It is very sad.

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  2. Wow. Five hundred days! Fantastic!

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    1. i wish it was 500 nights, too, but i'll take it!

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  3. Facts and picture are fantastic!

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