This month has already been a terrible one for Calvin, mostly in terms of seizures rather than behavior. I'm trying not to sink back into despair after having enjoyed a pretty good September and October which I had hoped meant the beginning of better days for my son.
After yesterday morning's grand mal seizure, the sixth one in just over two weeks—a number that I consider high for an entire month much less seventeen days—and having had seven partial complex seizures in the span of five days last week, I laid with Calvin in bed racking my brain about what I should do next.
The thought occurred to me that perhaps the CBD might be the culprit and that I should cast my net out to other parents on social media asking them if their children have experienced an increase in seizures with the addition of CBD. Scores of parents confirmed my hunch.
So, yesterday we halved Calvin's CBD oil. He slept well last night and did not have any partial seizures this morning. After I put him on the bus, I took out my calendars and, starting with 2014 when I first began giving Calvin a homemade THCA oil and, two months later, started his benzodiazepine wean, I charted his grand mal and partial complex seizures. I saw what I had not seen before: what looked like a pretty clear correlation between beginning a CBD oil (seven months after the advent of THCA) and the re-emergence of partial complex seizures which had been virtually absent for years. At the time, I had introduced the CBD because of a fearful uptick in grand mals, and I remember thinking that the partial seizures and spates of status epilepticus were due to the benzodiazepine withdrawal.
There is no way of knowing for sure, but it will be interesting to see if my tinkering—this decrease in CBD oil, perhaps its eventual elimination—will result in the lessening or disappearance of Calvin's complex partial seizures. Cross your fingers and knock on wood that things get better and don't go all to hell.
After yesterday morning's grand mal seizure, the sixth one in just over two weeks—a number that I consider high for an entire month much less seventeen days—and having had seven partial complex seizures in the span of five days last week, I laid with Calvin in bed racking my brain about what I should do next.
The thought occurred to me that perhaps the CBD might be the culprit and that I should cast my net out to other parents on social media asking them if their children have experienced an increase in seizures with the addition of CBD. Scores of parents confirmed my hunch.
So, yesterday we halved Calvin's CBD oil. He slept well last night and did not have any partial seizures this morning. After I put him on the bus, I took out my calendars and, starting with 2014 when I first began giving Calvin a homemade THCA oil and, two months later, started his benzodiazepine wean, I charted his grand mal and partial complex seizures. I saw what I had not seen before: what looked like a pretty clear correlation between beginning a CBD oil (seven months after the advent of THCA) and the re-emergence of partial complex seizures which had been virtually absent for years. At the time, I had introduced the CBD because of a fearful uptick in grand mals, and I remember thinking that the partial seizures and spates of status epilepticus were due to the benzodiazepine withdrawal.
There is no way of knowing for sure, but it will be interesting to see if my tinkering—this decrease in CBD oil, perhaps its eventual elimination—will result in the lessening or disappearance of Calvin's complex partial seizures. Cross your fingers and knock on wood that things get better and don't go all to hell.
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| Photo by Phoebe Parker |
It's a full time job as researcher, caregiver, child development specialist and neurologist, as well as chief bottle washer. I'm hopeful the change helps. Take care of yourself as well.
ReplyDeleteFingers crossed! While we had a lovely time of decreased seizures with CBD— about a year; I think it was a culprit re behavior changes and then when we went from an indoor grow and one ratio to the same strain grown outdoors— all hell broke loose for many, many months. No addition of THCa, THC or changing to different strains of CBD made a difference. When one CBD manufacturer finally said the obvious— its not working; that was it for us. I HOPE decreasing. Al I ‘s Dose works for you. Good luck Christy!
ReplyDeleteand different t ratio
It can all drive you mad, no? We're in a sweet spot for a change -- I am convinced that CBD really jacks up the Onfi levels and messes with Sophie because when I wean the Onfi, she does better after that initial withdrawal shit. I sure hope something irons out for Calvin. I can't help but think, too, that he's going through puberty and that these ups and downs might be the norm for a bit. Don't despair. Everything shifts and changes.
ReplyDelete