Today C. had a seizure-laden day and a
fever of 37.6 C (that's 99.7 Fahrenheit). I like to believe that was the cause but would be more
convinced with at least a 38. The hubby, who picked C. up from school, tells me
the staff observed a rash of seizures among the kids today in near-unison and they believe the place was struck by some sort of seizure blitz. I'm sticking with
the fever theory.
I managed a quick sketch of C. sleeping on her stomach again (over on the right).
I had switched her to her back while her pierced ears were healing (she was pressing on the earrings while asleep on her stomach). But then a red area appeared on her lower back a week ago. It developed into a pressure sore two days ago so we're back to stomach-sleeping these days. And, of course, her legs are raised on cushions every night to prevent edema which I haven't seen of late.
I managed a quick sketch of C. sleeping on her stomach again (over on the right).
I had switched her to her back while her pierced ears were healing (she was pressing on the earrings while asleep on her stomach). But then a red area appeared on her lower back a week ago. It developed into a pressure sore two days ago so we're back to stomach-sleeping these days. And, of course, her legs are raised on cushions every night to prevent edema which I haven't seen of late.
Still waiting for that cannabis to
bring some salvation. Tomorrow we raise the dose by one drop so, who
knows?
2 comments:
I'm still confused by how you dose the cannabis -- one drop? Two drops? How many mgs per day is she getting and what is the concentration? Also, Sophie has been having a lot of seizures lately, and we're attributing it to the full moon, the eclipse, Mercury in Retrograde, etc. etc. Ad nauseum. It just all around sucks, no?
Elizabeth:
Firstly, thanks so much for taking an interest.
Until we saw the neurologist 10 days ago, I really had no idea how much we were giving C. in mgs. Here are the neurologist's numbers:
We have 20% concentration cannabis oil of which we were giving (at the time of that visit) 113 mg. of CBD/day, and 5.51 mg. of THC/day.
We administered it via three doses/day: 7 drops, then 6 drops, then 6 drops again.
Since that visit we have risen to 7 drops for the middle dose.
The doctor instructed us to go up one drop/day at intervals of a week until we reach 10 drops/dose totaling 30 drops/day. At that point she'd like to see C. again.
I find that most of C.'s seizures occur while she's still in bed in the early morning hours. Do you?
I was chatting with my daughter in law yesterday who asked what changes I'm hoping to see with the cannabis, aside from seizure control. I told her about Sophie and her return to smiling after a 10 year smile-drought and said I'd be thrilled with the same gift. (More thrilled, naturally, with a few more gifts along the lines of comprehension, communication etc.)
I do hope Sophie still smiles despite her current bout of seizures.
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