Sunday, August 31, 2014

Seizure control still eludes but ain't she sweet?

Today C. went up to  fifteen drops of cannabis per day. Her starting dose, six weeks ago, was three drops per day.

She is definitely seizing less frequently. For the past week, one seizure a day excluding that aberrant day last week when she had four. I now believe I might have missed one dose that day. I was on the phone engrossed in that cannabis debate with my friend the pharmacist while about to give C. her morning dose. After the call, I couldn't remember whether or not I'd given it to her during the debate. (I tend to forget whatever multi-tasking I've done while chatting). 

I obeyed that cardinal med rule: When in doubt about a dose, do not administer! So I'm now convinced that I actually hadn't given C. that dose which may explain the upsurge in seizures later that day.

Today was, I hope, just  another aberration. I took C. out at mid-day in our oppressive heat to visit mother's grave where a few family members gathered - her tombstone had just been erected. I am pleased with the epitaph we wrote; while a bit verbose, it praised all her virtues.

But just minutes after arriving, C. had two seizures. She hasn't had more than one at a time in ages.

I know, I know: I shouldn't have brought her along but our only other option was leaving her in bed unattended for the two hours we were gone. I was loathe to do that.

In any case, it's clear that C. needs either a higher dose or a higher ratio than the 6:1 she is now receiving. I'm looking forward to helpful advice when I call the nurse later this week.

C.'s two-week vacation - which ends tomorrow - left me ample opportunity to sketch her, something  I haven't done in some time. Here (at the top of this post) she is modelling her new earrings again. [Musical background: The Beatles singing "Ain't She Sweet"]

3 comments:

Elizabeth said...

That is a beautiful sketch -- I'm impressed at your skill and her beauty! I'm glad to hear that you are seeing some results with the cannabis. Before getting the high ratio Charlotte's Web, we used a much lower ratio strain (I believe it was about 14:1) and were encouraged by the results. However, as you know, as soon as we got the higher ratio product, Sophie's seizures dropped decisively and dramatically. Right now, she is sensitive to even the smallest decrease in ratio -- at 23 or 24:1 we see an uptick in seizures. The best ratio, so far, has been around 30:1 for our girl.

The Sound of the Silent said...

Elizabeth, are you aware that your cannabis advice is priceless?

Yesterday, I reported to the advising nurse about our disappointing results and asked whether a higher ratio was available. I mentioned my blogosphere friend who alerted me to the significance of ratios. Well, she told me that oil with a 20:1 ratio is available and can be sent to our home next week (the earliest possible delivery to my city). I was blown away, am still repeatedly pinching myself and thanking my lucky stars that I found your blog.

(Of course I'm also wondering why I had to inquire about a higher ratio before it was offered but I won't dwell on that one.)

So, please continue sharing your cannabis savvy with us novices.

Elizabeth said...

Any time you have a question or want advice or anything, please don't hesitate to email me! My email is elsophie@gmail.co.

And if you're on Facebook, you should consider asking to join a few of the closed groups about pediatric cannabis therapy. There's a load of information that you might find useful and many, many families (including Canadians) who are using CBD.