Thursday, October 13, 2016

Where have all the proteins gone, long time passing?

Me walking C in her new shoes
C's blood test results from three days ago were very disappointing. Last month the dietitian I consulted assured me that with the re-introduction of lots of carbohydrates - after years of nearly none under the Modified Atkins Diet - we'd see a turnaround. Instead C.'s low protein, albumin and hemoglobin levels hardly budged. (The hemoglobin even dropped further). Bummer.

I consulted our pediatrician who initially suspected that the valproic acid was to blame since liver malfunction is a known risk of that drug and since the liver  plays the major role in producing proteins, including albumin.

He promised to get back to me with a more definitive answer but seemed to forget. When I called him today, he surprised me with a 180. He's now convinced that C.'s blood results are not low enough to indicate signs of liver failure, that the valproic acid is not involved and that the low protein levels must have a dietary cause. 

But he dissed the dietitian - politely, of course. (Yes, I'm now back to my old disdain for dietitians.) He thinks the heaps of chicken and turkey which I've been giving C. are at fault. They're not the ideal protein sources. The best ones, he said, are milk products and egg whites.

Needless to say, I'll be incorporating those foods into C.'s diet immediately and will repeat the blood tests in a few weeks.

Aside from the plague of pressure sores,  C. seems weakened by this mess as well. Even her assisted walking involves more of a struggle for her. Ah, for the old status quo.

C.'s neurologist, whom we emailed last night, agrees that the valproic acid is not a likely culprit.

So here's hoping the milk and egg solve the protein puzzle..                     .

C.'s post-school existence: We haven't organized any at-home therapies yet. So I'm still caregiver, nurse, physiotherapist and OT. The hubby does the heavy lifting whenever he's here. Those forbidding 24 steps outside our front door haven't budged yet either. So C. only gets fresh air on the balcony these days. I know, it's nothing to write home about. Hoping for better news soon.

C.'s feet, like the rest of her body, don't grow at a normal rate so she doesn't outgrow her shoes. And with only one hour of use a day it takes years for her to wear them out. We finally reached the point where I could justify buying her a new pair - one size up to accommodate her edema.


Elizabeth said...

Cute shoes! We, too, are struggling over here and I'm resigned to the fact that no one knows. All of my Sophie's bloodwork is relentlessly normal, so we're not talking any deficiencies -- at least not known ones. I'm going to go my old alternative route in the next few weeks and pay visits to the osteopath, homeopath and Chinese doctors.

Good luck to you and to C!

The Sound of the Silent said...

I thought Sophie had improved since her hospitalization. I'm sorry to hear you're still having a hard time. What are her symptoms? Please let us know how the alternative treatments work. We're gearing up for another blood test in about a week to see whether C.'s protein levels have risen after adding tons of eggs to her diet.
Wishing you and Sophie better days ahead.