He tipped over in the bath as the water drained from the tub. He shouldn't have; it was shallow. I let the our new nurse-in-training know that this was one of the signs I often see the night before a grand mal. It had only been five days since his last big seizure, so I mentioned that this omen—in and of itself—was not necessarily cause for alarm.
After I put Calvin to bed I noted in the daily journal many of the day's other harbingers:
*repetitive humming *not at baseline *warm red ear *didn't finish lunch *loud at home *poor balance *tons of eye poking *unusual screech in bathtub *rashy butt *tons of drooling *lots of rocking in chair at school *needs to poop *confused at 6:00 pm (walking in circles)
Despite the fact that I gave him a little extra THCA cannabis oil at bedtime, hoping it might thwart another seizure (he'd had two partial seizures the day before), he suffered a grand mal just before five this morning. I never know what triggers them or why sometimes they are more frequent than at others.
As the months pass, Calvin grows, and we reduce his benzodiazepine slowly, he is gradually having slightly more seizures. My fear of this trend causes me to want to stop the benzo wean completely, but I know if I do he will likely continue to suffer habituation and withdrawals. The only way to free him of these, in my best estimation, is to get him completely off of the benzo once and for all. So I push my fears aside and continue chipping away at his dose by tiny bits, hoping his brain won't suffer such bad hits.
I'm trying to think ahead to a time where, if things get much worse, we might need to turn again to the pharmaceutical world for some new and promising med. Besides the benzo and two cannabis oils, Calvin is on no small dose of Keppra, which is why I want him off of the benzo in case we want to start him on another drug. My hope is that Epidiolex might be available soon, the drug made from plant-derived cannabidiol (CBD) which is in trial right now. It seems the logical drug to choose considering Calvin has failed ten chemical ones, plus he has responded so well to the THCA oil I make.
He's at school now, having gone in late today. Extra morning THCA oil seems to work to keep the partial seizures at bay. Yesterday, we had our first significant snow, and it's on the ground melting. I kid myself by saying that it's only three months until spring. I hope the winter takes it easy on us this year. We could use a break.
After I put Calvin to bed I noted in the daily journal many of the day's other harbingers:
*repetitive humming *not at baseline *warm red ear *didn't finish lunch *loud at home *poor balance *tons of eye poking *unusual screech in bathtub *rashy butt *tons of drooling *lots of rocking in chair at school *needs to poop *confused at 6:00 pm (walking in circles)
Despite the fact that I gave him a little extra THCA cannabis oil at bedtime, hoping it might thwart another seizure (he'd had two partial seizures the day before), he suffered a grand mal just before five this morning. I never know what triggers them or why sometimes they are more frequent than at others.
As the months pass, Calvin grows, and we reduce his benzodiazepine slowly, he is gradually having slightly more seizures. My fear of this trend causes me to want to stop the benzo wean completely, but I know if I do he will likely continue to suffer habituation and withdrawals. The only way to free him of these, in my best estimation, is to get him completely off of the benzo once and for all. So I push my fears aside and continue chipping away at his dose by tiny bits, hoping his brain won't suffer such bad hits.
I'm trying to think ahead to a time where, if things get much worse, we might need to turn again to the pharmaceutical world for some new and promising med. Besides the benzo and two cannabis oils, Calvin is on no small dose of Keppra, which is why I want him off of the benzo in case we want to start him on another drug. My hope is that Epidiolex might be available soon, the drug made from plant-derived cannabidiol (CBD) which is in trial right now. It seems the logical drug to choose considering Calvin has failed ten chemical ones, plus he has responded so well to the THCA oil I make.
He's at school now, having gone in late today. Extra morning THCA oil seems to work to keep the partial seizures at bay. Yesterday, we had our first significant snow, and it's on the ground melting. I kid myself by saying that it's only three months until spring. I hope the winter takes it easy on us this year. We could use a break.
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| Photo by Michael Kolster |
I feel the foreboding here. And that picture is stunning.
ReplyDeleteWhat's the story with Epidiolex being eventually available?
i think i read somewhere that if it is FDA approved it might be available sometime in 2017 or 2018.
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