It's that time of year when sun and thirty-eight degrees feels balmy, when, on days like this, the college students can be seen wearing shorts, even though there is still snow on the ground. With more storms on the way, however, I try to remind myself that we are closer to spring than ever, trying my best to look on the bright side of things.
Having recently felt the dark grip of despair more than usual, I've had to apply an attempt at optimism for all things Calvin, too. Though Calvin is still averaging about five or six grand mal seizures a month (save a thirty-day stint ending in mid January when he had only three) his partial complex seizures are few and far between. Still, the number of grand mals is troubling, especially in the face of increased CBD oil hoping to get them under control. When questioning whether to continue increasing it, I consider the bright side of things:
Calvin has been sleeping quite well for weeks on doses of CBD oil between two and four milligrams per kilogram of his weight—higher than many children who are taking it for their epilepsy, though far lower than prescribed doses of the new CBD pharmaceutical, Epidiolex. Also promising is that Calvin hasn't been sitting up multiple times in the middle of the night banging his head on the side of his bed repeatedly like he used to, nor has he been staying up for hours on end completely wired like he did frequently several months ago. His appetite and balance are good. He has been rebounding well after grand mal seizures. His total number of monthly seizures has dropped from the teens down to the high single digits in the past three months. Apart from some behavioral problems stemming (I think) from gastrointestinal discomfort, I haven't seen bad side effects from the CBD.
Moreover, and as I've said before, this slight decrease in total monthly seizures comes despite being in the thralls of puberty, despite not increasing Calvin's high dose of Keppra in over two years, despite having cut his daily THCA oil in half, and despite the fact that he is has been off of the benzodiazepine Onfi, aka clobazam, for a year.
Granted, it is possible we could see better seizure control if I increased his THCA oil, but the THC in it appeared to make him irritable and seemed to give him panic attacks and rapid heartbeat. I'd rather try to eventually replace it with CBD so we could feel more confident boarding a plane with his medicine. Furthermore, I don't want to muddy the waters with too many variables, and since I don't see bad side effects that I would attribute to his CBD oil, I'd like to see if increasing it a bit might help quell his grand mals. I've heard that its sweet spot might be between five and six mgs per kg of weight. Right now, Calvin is taking about 3.5 mgs of CBD per kg of his weight—about 100 mgs per day divided into two doses—so we've got some wiggle room, which helps me remain optimistic.
I promise to keep you posted.
Having recently felt the dark grip of despair more than usual, I've had to apply an attempt at optimism for all things Calvin, too. Though Calvin is still averaging about five or six grand mal seizures a month (save a thirty-day stint ending in mid January when he had only three) his partial complex seizures are few and far between. Still, the number of grand mals is troubling, especially in the face of increased CBD oil hoping to get them under control. When questioning whether to continue increasing it, I consider the bright side of things:
Calvin has been sleeping quite well for weeks on doses of CBD oil between two and four milligrams per kilogram of his weight—higher than many children who are taking it for their epilepsy, though far lower than prescribed doses of the new CBD pharmaceutical, Epidiolex. Also promising is that Calvin hasn't been sitting up multiple times in the middle of the night banging his head on the side of his bed repeatedly like he used to, nor has he been staying up for hours on end completely wired like he did frequently several months ago. His appetite and balance are good. He has been rebounding well after grand mal seizures. His total number of monthly seizures has dropped from the teens down to the high single digits in the past three months. Apart from some behavioral problems stemming (I think) from gastrointestinal discomfort, I haven't seen bad side effects from the CBD.
Moreover, and as I've said before, this slight decrease in total monthly seizures comes despite being in the thralls of puberty, despite not increasing Calvin's high dose of Keppra in over two years, despite having cut his daily THCA oil in half, and despite the fact that he is has been off of the benzodiazepine Onfi, aka clobazam, for a year.
Granted, it is possible we could see better seizure control if I increased his THCA oil, but the THC in it appeared to make him irritable and seemed to give him panic attacks and rapid heartbeat. I'd rather try to eventually replace it with CBD so we could feel more confident boarding a plane with his medicine. Furthermore, I don't want to muddy the waters with too many variables, and since I don't see bad side effects that I would attribute to his CBD oil, I'd like to see if increasing it a bit might help quell his grand mals. I've heard that its sweet spot might be between five and six mgs per kg of weight. Right now, Calvin is taking about 3.5 mgs of CBD per kg of his weight—about 100 mgs per day divided into two doses—so we've got some wiggle room, which helps me remain optimistic.
I promise to keep you posted.
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| Photo by Mary Booth |
I'm glad to hear of your bright side. I've been fiddling, too, and seeing some stuff. We need one of those catch-up calls.
ReplyDeleteyes we do! xo
ReplyDelete