Thursday, May 22, 2014

Pot? Or not?

Just kidding: It's given orally as an oil
to epileptic children
We are primed for our next neurologist's check-up in one hour. This will be our first since weaning C. off Rufinamide.

We look forward to reporting to the doctor that C. clearly benefited from that change: generally her seizures are now limited to when she's in bed.

Many years ago another pediatric neurologist told us not to harp on those because waking up is a common trigger of seizures. She said to count only the ones occurring after she's fully awake. In any case, the daily tally has dropped.

It's also clear that our current neurologist's advice to maintain the 700 mg twice/day of Valproic Acid was the way to go. While the blood tests had shown that C.'s V.A. levels are higher than the recommended normal levels, the neurologist chose to disregard that. They don't call her the department's epilepsy expert for nothing.

But the hubby and I aren't through with the med tweaking. Each step forward whets the appetite for more. Now we're hungry for functional progress

So when I meandered into a parent/blog I'd never visited, this post grabbed me. Aside from its poetic, entertaining and prolific writing, this blog is highly informative.

Here I was, immersed, so I presumed, in the world of epilepsy, utterly ignorant of a new, effective treatment. How had marijuana evaded my radar? Well, we're wasting no time, this time. It now heads our drug bucket list and will be the major topic of conversation today with our neurologist.

I was further surprised to learn via Goggle (here and here among other sources) that marijuana was recently approved officially here as a treatment for children's epilepsy. At nineteen, though, C. is technically an adult, so that may present one hurdle. Of course, the biggest  I anticipate will be winning the neurologist's support. Wish us luck!


Elizabeth said...

Well, you know I wish you luck! Actually more than luck -- if your neurologist doesn't "approve," figure out a way to try it, anyway. You've got nothing to lose.

The Sound of the Silent said...

Elizabeth, again, thank you so much for introducing us to cannabis.

We were pleasantly surprised by our neurologist's response. She said a couple of her patients' parents had already inquired about it but at the time she knew little about it. She subsequently contacted a colleague for info who invited her to a meeting of our country's cannabis-for-epilepsy experts. It is scheduled for next week and she urged us to email her immediately afterwards.

C.'s age may be a hurdle but the doctor promised to try and help us. She even echoed our sentiments word for word: "What have you got to lose?"

I wish we could clone her.

Single Dad / Disabled Daughter said...

Do whatever it takes to try it. You must!

The Sound of the Silent said...

I'm raring to go. Just hope the bureaucracy involved won't prove too onerous. Thanks for the encouragement and regards to Pearlsky.