Wednesday, April 20, 2016

Doc disses the new drug (THC)

This week brought three "perfect bad days" so we finally cracked open our bottle of THC.

On the first, I gave one drop, waited a few hours, observed no adverse effects, saw another couple of seizures and gave a second drop. Still no adverse effects and seizures stopped.

The following day, C. had a string of severe seizures (or so they were described over the phone by the school nurse). But we were too far away to race over there (at the eye surgeon to plan cataract surgery). So I just advised giving Advil even though it wasn't obvious she was feverish. Eventually, after missing her hydrotherapy because of them, the seizures abated. (so I was told).

When she seized twice at home that evening, and with the bad morning in mind, I gave her one drop of THC. A few hours later, after another seizure, I gave a second drop.

This seemed to render her tired and floppy. She did manage to do her MEDEK-walking for 40 minutes. But she was incredibly and unusually loose-limbed which I attribute to the THC. Not at all terrible as side effects go.

The following day, after an awful string of seizures (approximately eight), I gave three THC drops at once and after just one more drop, they abated.

C, waiting to see the
neurologist. She was
having a very bad day
Yesterday, again a horrific seizure tsunami (around ten), I gave her four drops and again, after one last seizure - calm! Yes, limp, perhaps lethargic, but seizure-free until the evening when she just had one.

Right after the awful morning, which also resulted in a bitten and bloody tongue - as her clothing attests (see photo) - we saw the neurologist.

I handed her the boxes of CBD and THC oil for her perusal and - wham! She blew a gasket. In her gentle and restrained manner, she rebuked me for ordering and administering the THC oil without first consulting her. I explained that I had expected to do that but when the cannabis nurse said the pediatrician would suffice, I opted for that. With our scheduled visit only a week away, I figured I'd notify her, the neurologist, then.

"You could have emailed me first," she noted        .

I didn't want to quibble but the truth is she often takes ages to respond to emails and I wanted that THC asap. Nonetheless, I apologized and promised to halt it after she emphasized that there's no evidence of its efficacy in treating epilepsy. (What choice did I have? We've been through many awful neurologists and don't want to risk losing this one).

She is particularly opposed to using THC with children but when she remembered that C. turns 21 next week, conceded that it isn't a concern here.*

C's VNS implant
The neurologist quickly recovered from her THC meltdown and was her kind and supportive self for the remainder. At my suggestion, she agreed to apply to the Ministry of Health for a new license citing a higher dose. We are still far from the maximum, she said. She also convinced us to submit C. to a second VNS implantation in the near future. More about that next time.

In the meantime, here's a glimpse of the old one.

* Once out of the office, the Hubby and I agreed we'd continue giving THC in future tsunami circumstances. It's clear to us it works.

1 comment:

Elizabeth said...

I'm speechless at your "kind" neurologist's ignorance.