Friday, June 5, 2015

Some lousy liver news

C visits the neurology clinic
We're back from that dreaded visit to C.'s neurologist. As I'd hoped, those pesky platelets didn't alarm the doctor at all. Instead, the liver profile results did a terrific job of that. The Hubby and I hadn't even noticed that they were greatly elevated for the first time ever.

The neurologist thought the cannabis might be the culprit. That would necessitate lowering the dose, something I'm loathe to do. I hadn't read that cannabis could harm the liver but Dr. Google confirmed that for me last night.

The other possible cause of the liver mess-up is a virus. The doctor posited that C.'s hunger strike - at its peak when the blood was drawn - reinforces that theory.

So in two weeks, the blood test will be repeated and we'll hope and pray like the dickens that the results improve. In the meantime, and after a SEIZURE-FREE day, I am bracing myself for a probable farewell to cannabis - at least to this maximum dose.

My concerns that the neurologist would scold me for starting the benzodiazepine wean without a green light from her were baseless.  She wasn't displeased and approved of the rate at which I've been doing it. She just didn't sound at all optimistic that it would yield any leaps forward for C. I pointed out that several parents (for example) have blogged that cannabis is more effective when the benzos are out of the picture. But she said that the two drugs work on entirely different parts of the brain so there wouldn't be any interaction.

I told her I'm still hoping, however unscientifically, that without benzos C. will be more alert. And we left it at that.

When we asked about her other cannabis patients - a total of six - she said that only one had had a dramatic improvement. (from several seizures/day to none). She repeated the fact that a problem with the cannabis we're receiving is that its composition is inconsistent. She also mentioned that it can cause psychosis and asked whether C. has grown irritable, as some of her other patients have. (She hasn't, of course) She said that our experience is helping her and her colleagues learn about cannabis.

Then, on the spot, despite her skepticism, the kind doctor tackled all the nonsensical  paperwork required by the Ministry of Health to renew C.s cannabis license. Yes, the year is nearly up.

I thanked the doctor for her support in this experiment and left her office feeling rather upbeat. The liver news had not yet sunk in and I hadn't yet googled the topic.

But today I am utterly depressed about it. C.'s life seems to be a long string of cruel disappointments.

P.S. Along with the hunger strike I've been writing about, we had two days of increased seizure activity this week - around 10 on one of those days. And without a  fever. We haven't had that many in as long as I can remember. Afterwards came two days of these new, frequent and weird eye-flutter seizures. They lasted about 10 seconds and were mild. C. could even walk and eat during them.

They left as inexplicably as they came. (The cannabis? The benzo weaning?) And the hunger strike seems to be abating too.

1 comment:

Elizabeth said...

I have a lot of thoughts about this and would love to talk to you more about it. Please email me at if you'd like. I have a wonderful pdf from a prominent doctor here in southern California that you could bring to your own doctor. BTW, there is VERY MUCH A RELATIONSHIP BETWEEN ONFI AND CANNABIS/CBD.