Tuesday, October 7, 2014

Seizures up, spirits down

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. 

Still waiting for that cannabis to bring some salvation. Tomorrow we raise the dose by one drop so, who knows?


Elizabeth said...

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?

The Sound of the Silent said...


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.