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.

Pesky pressure sores, bad blood and a dream toy

Four layers of treatment and the results of the blood tests

Our ever sweet and competent visiting nurse urged us to test C.'s protein levels. He suspected that low levels were behind her frequent and slow-healing pressure sores.

Well, the deed was done today (very nearly wasn't, actually, because he had a very hard time coaxing enough blood out of C.'s veins and said it was due to dehydration).

Anyway, it turns out that C.'s protein level is fine but several other readings were extremely un-fine. LDL was abnormally high as was vitamin B12. There were a few more abnormals but I can't seem to anguish over all this.  My reserves are depleted so I've pushed this to the back burner for now.

Next week, we have a long overdue appointment with C.'s neurologist and I'll leave it to her to decipher the numbers for us.

Makes sounds, but audio quality
is poor

As for the pressure sore, its progress has been so disappointing that the nurse reinstated it to the first line of treatment.

Another hitch is that the plastic covering over the bandages has itself created fresh sores - something that never happened before.

I've bought C. a new toy which seems to stimulate her to flick her fingers over the buttons in order to elicit animal sounds, names of colors and shapes and music. Unfortunately it's a cheap device and the quality of its sound is pathetic. I dream of one with the same sort of easy-press buttons that produces pleasant sounds. I can't find one for sale.

Does any of you readers know of such a product available on-line?

P.S. Our bottle of THC remains sealed while we wait for the perfect "bad day".