Tuesday, November 15, 2016

Now disabled *and* chronically ill (Part 1)

The bag on the floor contains what was
being drained from C.'s peritoneal cavity

[Written Monday, November 7]

C. is officially hospitalized, although we brought her home yesterday evening and returned this morning. This arrangement is known as a "vacation" here. And while the staff were reluctant to grant C. one, I told them that we were bringing her home regardless and then lo and behold it was hastily "organized". The reason I was so truculent (internal seething is usually more my style) was that we had been ignored the entire day. No specialist doctors examined C., no tests were done and no treatment administered.

After my meltdown, one gastro specialist did appear on the scene and, as I later told our pediatrician who had unearthed him to treat C., he was worth waiting for an entire day: young, friendly, knowledgeable, savvy.

He had two possible theories as to why C. has developed liver disease and ascitis.
  1. The valproic acid (VA) caused it.
  2. She has the genetic syndrome Wilson's Disease.
He leans more towards theory #1 but will test her for #2. It can be diagnosed rather easily without genetic testing.

And please note everybody: He utterly rejected the neurologist's opinion that cannabis could be the culprit and should be stopped asap. "Why hasn't she blamed the valproic acid?" he wondered.

But he instructed me to wean C. off the VA quickly: reduce from 700mg/dose twice a day immediately and then over a few days remove the remainder.

Two intrepid medical clowns try their hardest
to cheer up C.
Now I've had some experience with anti-epileptics and asked him whether that protocol might not trigger seizures. In an instant, he back-tracked, advised me to leave the dosage untouched and said he'd consult with a neurologist.

Hmmm. Another instance of proof that we can never rest on our laurels and blindly entrust our children to the doctors - regardless of superlative experience, expertise and reputation. We've go to question and double check everything.

To be continued

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