Thursday, November 16, 2017

Rising stress

IV Drip
Nothing uplifting to report about C.

When the hospital doctors tried stopping the IV Dormicum (aka Midazolam), she returned to Status Epilepticus with a vengeance within a couple of hours (one minute between seizures).

So she was rehooked-up immediately to the stuff.

Then today the doctor lowered the dose from 3% to 1% and before our very eyes she began seizing again. So he promptly re-raised it and the seizures disappeared. Not much of a solution.

I inquired about the longer term plan.

He told me their plan was to get her off Dormicum and replace it with an oral benzodiazepine, Frisium (aka Clobazam); raise her Keppra (aka Levetiracetam) dose; stop the Phenytoin; and continue with Vimpat (aka Lacosamide) aiming to raise it from 100 mg twice a day to 200 mg twice a day.

Can't imagine there will be much of C. left on that potent a cocktail.

At the same time he said the team is encouraging continuation of Cannabis CBD and THC.

That's all very nice (I'm referring to the cannabis green light) but there's no point in giving THC if she has already been zapped with the other stuff. How will we know whether it's worked?

And we are currently allotted such a small quantity by the government's medical cannabis agency. We'd need a lot more to administer it freely.

A quick bedside sketch
I'm giving CBD whenever she's sufficiently awake to enable me. But that's rarely.

Well, if any of you would not find the above stressful, please let me know. Because the senior neurologist who dealt with yesterday's setback told the hubby: "Your wife seems very stressed. She reminds me of my mother. I see I can't share all information with her."

Who knew senior neurologists go in for crude mansplaining?

PS: C.'s own neurologist came by today after being away all week. She offered the option of an induced coma which would entail intubation accompanied by the risk of C. never being able to breath independently again. I said thanks but no thanks.

She then warned that even C's current treatment protocol could at some point necessitate intubation. Would we agree to that? Something to ponder.

But, of course, not get stressed over. Perish the thought.


Elizabeth said...

Jesus Christ. I am sorry. I'm enraged by the neurologist's remark. I wish you didn't have to do the Onfi route -- isn't there any way you can avoid that? CBD can jack up the level of Onfi -- did you know that? So you'll probably see some immediate efficacy, but habituation is unavoidable and it's a hideous drug to be on long-term as it's next to impossible to wean. I generally don't give out advice, but I wouldn't try Onfi.

The Sound of the Silent said...

I appreciate your input, Elizabeth. In fact, I've learned about the evils of benzos from your blog. Your writing motivated to wean C. off Rivotril a few years ago. But we haven't been consulted by the neurologists treating C. this time around. Actually, "roundly ignored" is more accurate. They have tried to placate us with assurances that most of the drugs they've added on will be quickly stopped once she's stabilized. But I'll believe that when I see it.
We have now approached a pediatric neurologist we've known for years who works in the same hospital. She understood our doubts and concerns and agreed that the treating doctors are probably just piling on the drugs willy nilly because nothing is working. She said C. may just be one of those patients who simply don't respond to any drugs and are no worse off without any.
We'll see what tomorrow brings but I'm growing more pessimistic by the day.

Ajax said...

Ugh. I'm so sorry. Wishing i had something more helpful to submit. That neurologist sounds like a condescending, pompous, misogynistic twit. And also maybe a callous @$$#0!&. (Apologies.)

You're probably well aware already, but in the off chance it helps to know; she won't remember much, if any of the hospital experience on account of the midazolam.

The sketch is exquisite. To say you're skilled doesn't quite suffice, in my opinion, and I hate to say 'talented' as not to discount the many, many hours and dedication artists put into honing their crafts; in any case, you've got something there.

(Here from Elizabeth's blog. Best to you. Cheers for C and light.)

The Sound of the Silent said...

Thanks so much for your encouragement. The bedside sketching helps endure the hours spent bedside while C. is so awfully sedated.
As for that misogynistic doctor he isn't much of an anomaly. Even the nicer ones - some female - haven't been too pleased with my questions. They'd prefer to just proceed unimpeded with their trials and errors.
Hope you had a happy Thanksgiving!

Ajax said...

You're more than welcome. You're not alone in that assessment regarding the demeanor and conduct displayed by too many doctors. Unfortunately it doesn't stop at sexism. I read an account of a pediatrician with epilepsy who asserted the most discrimination she ever faced, secondary to a seizure diagnosis, was within the medical profession.

Oh, and isn't that maddening? It's such a non-scientific approach to change multiple variables all at once, yet they seem to do it so often (and nonchalantly). It's such a mind bloop realizing they don't have near the clue one might presume; they're really just playing darts out there. (Sorry for the less-than-positive response, and light to both of you.)