Friday, September 12, 2014

Frustrations

C's swollen feet
It's been a somewhat disheartening week.

The cannabis has proven to be ineffective thus far. C. has had several seizures a day despite our raising the dosage more drastically and frequently. It isn't easy to report failure so I've waited until a faint ray of light appeared yesterday with the delivery of a new batch of cannabis drops. These are of the 20:1 ratio - i.e. 19.9% CBD and 0.1% THC.

Immediately after depositing the precious bottles in my med drawer – which now smells like a pot party – I called the nurse for dosage instructions and reached her on my first try. I was clearly on a roll.

In any case, we’re now on a dose higher than her previous one on the low- ratio drops.  So for the next five days it will be 10 drops/day divided into three doses. And every five days we’ll add one drop to each dose.

Our first day of this regimen was bleak: seven seizures.

Then new hurdles joined the mix. The school nurse informed me that C.'s feet are swollen from fluid retention (I must have been asleep at the wheel; didn’t even notice). She says it's common in children who rarely move their legs and recommended raising them on a pillow while she's sleeping.

After raising her leg for several hours while both sitting and sleeping, the swelling had totally receded. So I've instructed the teacher to do the same during nap-time and hopefully this symptom won’t progress.

But after the foot-swelling advice, the nurse dropped this little bombshell: she believes students "graduate" at age twenty, not as I'd presumed, at twenty one. That, of course, would give C. eleven more months of an "education" -  actually more like babysitting - after which I have no inkling what options exist for her.

I’m hoping the nurse was wrong but am in no hurry to investigate the matter and risk learning that she is right.

4 comments:

Elizabeth said...

Have you independently tested the cannabis? I highly recommend doing so, as you might really NOT be getting what the label purports to be in the bottle. Too much THC -- in any ratio -- can really affect our kids and exacerbate seizures. Is your daughter having MORE seizures on the oil or about the same or less overall? Also, is she on a benzo?

Lisa said...

Hello, I am a new reader, having just found your blog on Elizabeth's A Moon Worn as if it were a Shell. Your writings and portraits are so very beautiful. Am sorry to hear of the passing of your Mom. I too care for a medically complex child and parent and share many of your same feelings. Please know there are others out here who can relate and offer support if only in a small way.

The Sound of the Silent said...

Lisa, thanks so much for your supportive comment Isn't it comforting that we can so easily bridge vast distances to share and inform one another. I thank heavens for the blogosphere every day.

The Sound of the Silent said...

Thanks so much for your input, Elizabeth.

It hadn't occurred to me to test the cannabis independently but if need be I will.

My daughter's seizures are about the same as before in number and intensity. For about the past twelve years she's been on a benzo (rivotril). I was utterly ignorant about the horrible possible side effects of that category of drug until I started reading your blog (and even then it was a while before the penny dropped and I Googled Rivotril to learn it's actually a benzo - I had never read the accompanying leaflet. I mean why would I? The neurologist prescribed it , right?).

I am toying with asking our neurologist - at our next visit in 2 weeks - whether she'd support weaning C. off it. I suspect C. isn't benefiting from it anymore anyway. It's just a hunch but at this stage in her life, I'm ready to take risks for a chance at a higher quality of life.

In the meantime, we're raising the cannabis dose every five days so I'm still hoping for some improvement.

I trust Sophie is stable these days and still smiling.