Thursday, February 9, 2017

My daughter thinks she's a surfboard

Stiff as a surfboard: Trying to get C. into her wheelchair today
Once again, it's a mixed bag of news regarding my daughter C.

We did fresh blood tests a week ago which showed that her liver has improved and her albumin level is within the normal range, though just barely. Also, without taking any diuretics, she is free of fluid retention anywhere in her body for the first time in years.

(Admittedly, that’s the layman’s take of the Hubby and me. The extremities are easy to assess; the abdomen, less so but we’re both pretty confident it’s all clear).

Another perk of that albumin rise is the dramatic progress in the healing of her pressure sores. I’m already allowing myself to dream of life without daily bandaging. (For those as ignorant of albumin’s significance as I was a few months ago, note: low albumin level means failure of sores to heal.)

The doctors, in particular the gastro, had been convinced that C.’s liver was seriously diseased, possibly with a chronic autoimmune illness. You’d expect them to now backtrack and blame the Valproic Acid for the liver mess – which was their original theory. But they haven't. They just concede that C. is a “complex case” and “a puzzle”. (The pediatrician did mention a viral infection as the possible culprit but didn’t elaborate.)

Presumably at our next visit to the gastro, we’ll hear some firmer hypothesis. For now, we’re just reveling in C.’s rehabilitated liver.

But, as I said, this is a mixed bag so there's been no partying to celebrate all the above. Because, despite those positive developments, C. hasn't been functioning very well. She has resumed feeding herself and we're really thrilled about that. But she has also become extremely stiff and won't bend her knees either to walk or to be seated. In the past, she has had a tendency to lock them periodically but she always loosened up eventually. These days, they are constantly rigid to the umpteenth degree. It takes two-three adults to seat her. And when I try to walk her, she just goosesteps.

Seizures have been more or less under control (around two a day) with a raised Cannabis dosage: 22 drops, 3 times a day. She’s also getting Keppra – 750 mg twice a day and Carnitine 500 mg, 3 times a day.

We continue to enjoy our daily help with caring for C. She’s a fantastic young Australian woman who just earned her BA in chemical engineering. She arrived without any experience in this field but is a quick learner, reliable and very compassionate towards C., which has enabled me to sleep more at night, dote on my grandchildren and, so far, keep that Takotsubo at bay.

6 comments:

Rebecca Yourig said...

I am so glad she is medically better. Any ideas at all from the doctors as to why she is so stiff? Or physical therapists? How unusual. Please share with us any theories .

All the best to you

Rebecca Yourig said...

Glad she is better. Let us know why the stiffness. Best wishes to you both

Rebecca Yourig said...

I am so glad she is medically better. Any ideas at all from the doctors as to why she is so stiff? Or physical therapists? How unusual. Please share with us any theories .

All the best to you

Elizabeth said...

However mixed, this report seems overall good. How constantly puzzling our girls are! You asked over on my blog how we give Sophie THC. It's also an oil-based product, and I give her .2 ml at night with .4 ml of CBD.

The Sound of the Silent said...

Thanks, Rebecca.

We'll be pursuing this with a physiotherapist and an M.D. who specializes in spasticity so I'll update once we know more.

The Sound of the Silent said...

Yes,Elizabeth, they sure are full of surprises.

I'd really like to try giving THC regularly. What is the concentration of your THC oil? Ours contains THC: 3% = 33mg/g and CBD 0.15% = 1.5 mg/g.