EEG enigma and dosing in the dark

Last week was our quarterly visit to the neurologist, but my cataract and dental issues left no time to blog. I'm glad to have a few minutes to share what she told us.

The visit began with C.'s first EEG in several years. She was so calm that an anesthetic was unnecessary. She even stopped grinding her teeth after I stroked her cheeks. The technician asked me to intervene because the grinding made the EEG go haywire. After that it was smooth sailing. C. even fell asleep.

To my layman's eyes, the lines on the screen looked a lot less zig-zaggy than in the past. But that may just be wishful thinking at work. The neurologist herself explained that the zig-zags definitely indicate epileptic activity but without seeing her previous EEGs - something she had no time to dig up - she couldn't comment on improvement. Hopefully she will eventually compare them (and confirm my rosy assessment).

She then gave the green light to raise the cannabis dosage by another 50% of her current dose. So we can go up from her current 46 drops/day to 65 drops/day and then stop raising it. That final dosage will only be a moderate one. The doctor doesn't recommend reaching the maximum. She says the dearth of reliable studies leaves cannabis dosing in uncharted territory. A higher dose might even be detrimental.

So here are a few numbers to crunch:
- C.'s oil contain 15% CBD and 0.75% THC which equals a 20:1 ratio. 

- Her 45 drops/day equal 7 mg per kg. 

- We aim to raise her to 65 drops/day or 10 mg per kg 

I'll keep you posted as to her progress. 

At this point, in addition to a reduction in the number of seizures on most days, I have noticed an improvement in her walking. (It's the MEDEK assisted sort.) She seems to stand straighter and takes bigger steps with her right leg. The left does not step independently. 

But I still crave a touch of cognitive progress. No headline-grabbers; I'm too realistic for that. Just a few new, minor, non-verbal reactions from C. would do me fine. 

And while on that topic, we still haven't heard from the neurologist who promised to canvass his colleagues about minocycline as a treatment for cognitive impairment. We emailed him a reminder today. I didn't ask the neurologist we saw last week about the drug because she's an epileptologist, so I figured this subject is not her field. 

Other brief updates:

Our grand-daughter's aplasia cutis was officially declared history by the neurosurgeon this week. No more bandaging and no follow up visits. We are one very thankful family this week.

My article about institutionalization of people with disabilities - sadly, it still thrives here - was published last week. After its umpteen revisions, the piece didn't feel like 'my baby' anymore so I wasn't quite thrilled. But at least the message it conveyed is circulating. Today's tally is 75 tweets and 135 recommends