Friday, June 30, 2017

Summertime and the livin' is none too easy

C. is lying beside me and I'm afraid to move or touch her lest I trigger another seizure.

She has been having lot of them today. Not enough to qualify as status epilepticus, but nonetheless, not a pretty picture.

Yesterday, they were frequent but mild. Today, they're the full blown sort; the ones that engage every cell in her body, contort her face, cause moans and cries and devastate me.

I write this with the expectation and dread of the next one.

Unfortunately, she has no fever - and I mean not a trace of it. The thermometer read 37.3 degrees Celsius rectally (say 99.1 in Fahrenheit terms) which can't be considered fever by any stretch of the imagination. So I haven't given her any Advil. When she gets her neurological fevers, Advil banishes the seizures.

Then there's the THC oil which usually zaps strings of seizures. When I gave it to her this morning, it had no effect. Since that was ten hours ago, I could try another dose now. But I'm reluctant to because we're down to our last few drops of it.

Our neurologist's request from the medical cannabis authority for a new license which adds a bottle of THC to the ten bottles of CBD we receive has gone unanswered.

Our own numerous calls, emails and faxes to the frigging government office have also been in vain. The only response we have gotten was a couple of weeks ago when we received a new, temporary license. It permits the same number of bottles of CBD we've been receiving and makes no mention of THC! 

I wrote that last night. Today she's only marginally better; slightly fewer seizures, but still looking like a rag doll most of the time.

We've emailed her neurologist for her advice and just to "kvetch" a bit. I asked her whether she thought we could raise the Keppra dose although that really isn't a route I relish taking. (C. is now at 1,000 mg of it twice/day.)

Here's a photo of C. (below) taken on Tuesday before this downturn - at her weekly hydrotherapy session.

And here (below) she is last week with her little nephew. The interest they show in her as babies fades fast when they realize she can't interact. By around the age of one, they ignore her.


Elizabeth said...

I'm so sorry to hear of the downturn and can completely empathize, as you know. Your tone is so sad here -- that last bit about babies says it all, doesn't it. Yet, we keep on doing it, over and over and over. I sure hope you can fiddle with the THC and CBD. I have loads of THC here as we're not using it anymore for Sophie. I wish I could get it to you.

The Sound of the Silent said...

We're still awaiting the license for THC and I do so wish you could send us your spare THC. We have a bit left which I hope can carry us through until (if?) the government's health unit delivers.