Wednesday, February 25, 2015

Signs, spoons, seizures and social workers

We've had some seizure-heavy days; hence the recent silence. With all our hope on cannabis, it's hard to watch it being so ineffective and even harder to blog about it. 

After a string of seizures yesterday, I did find that C. had a low fever which was obviously triggering them. That was encouraging. But the other isolated seizures have been fever-free. A bummer.

Yesterday I spent a half hour with a student of social work doing a stint at C.'s school. She is drafting a pamphlet/guidebook for the parents and wanted my input. I reluctantly agreed. Predictably once I got going I slipped into "rant mode". I did try my best to punctuate each tale of woe with a tip for other parents to give the rants a somewhat broader appeal. Oh, and I kept my voice down. Still, I don't think the social worker enjoyed most of it. Lots of TMI and in tangential areas.

For instance, our six-week nightmare with C., aged 14 months, in status epilepticus, hospitalized  and under the care of an arrogant and egregiously incompetent neurologist who was overwhelmed by the situation. That one produced tip #1: 
Don't trust just any old neurologist; leave the ones that don't deliver and seek out an epileptologist for the treatment of epilepsy.
Nevertheless, this following tip seemed to resonate with her. First the rant: how the school's state-of-the-art therapy pool is now barely used by the students since they were reduced from two to one session a week - and that's if they're lucky. I mentioned that sessions are often canceled due to a therapists' meeting or the water not being adequately heated or staff absences. I said probably most parents weren't aware that the pool is nearly empty during school hours and that it's a for-profit enterprise in the afternoons. 

Then tip #2: 
Visit the school, snoop around and then fight for what you believe your child deserves. Don't rest assured that your child is being optimally cared for.
The student then asked me to attend a couple of meetings with other parents and staff. I told her I'd meet once with parents but not with staff. I told her I regularly speak to the staff involved with C. and that's enough for me.

I cautioned the woman repeatedly to keep everything I told her anonymous. But I'm still afraid my reckless soul-baring will boomerang in my face. 

Now, here's C doing her "I want to eat" sign. 
Then she raises the spoon, and the food on it, brings it to her mouth - and eats.



Elizabeth said...

I've missed you and am sorry to hear that C has been having some rough days. I'm glad that you were outspoken with the therapist -- it's important to share your story, because what happens to you probably happens to others.

The Sound of the Silent said...

It's great to hear that Sophie is doing well. I'm particularly encouraged by the contribution you believe was made by lowering her benzodiazepam. We haven't touched that yet. Our neurologist wants C. to reach the maximum cannabis dose first and only then to tackle the benzo (she's on Rivotril drops).

I'm hoping so, so intensely that we'll see further progress then. I don't even entertain the possibility that we're among those you mentioned who weren't saved by cannabis.

Thanks for your continued updates and those stunning photos of Sophie in her cool outfits.