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.

Fifteen years on and farewell to MAD

We're still grieving over the 15th anniversary of the worst terror attack in history. It is hard to believe how long ago it was - I still vividly remember exactly what I was doing when I first learned of it as if it had happened yesterday. But at the same time, doesn't it seem the outrage over those egregiously vicious acts has dissipated too quickly and easily? What are your thoughts?

At the urging of our GP, who is filling in for C.'s pediatrician (the latter, at the age of 70, decided to climb a few Californian mountains), I consulted a dietitian about the C.'s plummeted albumin and slightly low hemoglobin levels. I did so very reluctantly since I've never had a high regard for dietitians, presuming their knowledge to be scanty and freely available from Dr. Google.

Well, I may be prejudiced but, strangely, I'm also pretty open-minded. After a brief session with this dietitian I did a 180. She  won me over with her explanation of how the body needs carbs and, when it doesn't get any, it breaks down protein to extract the carbs therein causing protein depletion..

She added that C. may have tolerated the MAD - Modified Atkins Diet - but was now apparently suffering these side effects from it.  (She's been on it for about 10 years.) I left the clinic - 5 minutes from home - with instructions  on how to introduce carbs gradually and a referral for repeat blood tests next month. (Could it get any simpler?)
So C. has already had red quinoa and brown rice which has left me  high on optimism again. True to form, my imagination has run amok and I'm dreaming that the carbs will not only help heal C.'s pressure sores but boost her energy and cognition levels. (An occasional bit of fantasy never hurt anybody, right?)

And yesterday we brought C. to our HMO's Wounds Clinic where the experts re-examined C.'s whoppers, declaring them all either "healing nicely" or "not-too-bad".  Her course of antibiotics was halted and the iodine and gauze treatment continued along with twice weekly visits from our our dear home visiting nurse.

Unwelcome weight loss

During the summer vacation last month and, again, when hydro-therapy was cancelled last week, I gave C. her showers at home.

Besides being strenuous,  the experience was traumatic. That's because, to put it bluntly, C. has grown gaunt. The real-deal gaunt; the anorexic-gaunt.

Those weeks when she was barely eating (here and here for instance) have clearly taken their toll. I decided to add something to her modified Atkins diet that might add a bit of fat to her skin and bones. First, I tried red quinoa mixed in with her meat and vegetables.. She rejected that out of hand. For three meals she refused to lift the spoon and, when I myself fed her, she kept the stuff in her mouth for ages before swallowing despite many swigs of water to wash it down.

I admitted defeat and ditched the quinoa. I've now switched to whole sesame tahina. She seems more amenable to this and spoon-feeds herself again, albeit very slowly. Each meal takes a half to two hours.

Here is C.'s gauntness in all its glory:

 

And here is her seizure-related gash healing very nicely:

I can't wait to have those whisker-like stitches removed, though.

The occupational therapist called to brighten my day (just kidding)

There's nothing like a stay in hospital to grab some attention for your child from the school staff.

So yesterday the occupational therapist called me to discuss C.'s bout of dehydration and lethargy. The last time she spoke to me was years ago.

I was out. The Hubby took a message, urged me to call her back (I was inclined not to) and insisted "She means well." (I begged to differ.)

So for the sake of marital harmony, I returned the call.

She questioned me regarding C.'s diet, vitamin levels, malnutrition, insufficient calories,  the need to test for vitamin levels, the need to consult a dietitian, the undesirability of giving water when C. is reclining (she swallows it better that way when weak).

Everything but the kitchen sink.

Given the low self-esteem that's been plaguing me lately,  this little chat was the last thing I needed.

But somehow I swallowed it all, dutifully thanked and agreed with her on every score and emitted but one criticism: of  the aides who left C. dry and hungry for hours without even notifying us. The OT asked me to demonstrate to her how I give C. drinks while she's lying down with torso slightly elevated. I do this whenever she's reluctant to drink, lethargic or in the middle of the night.

The demo took place today.

The OT didn't like the position, advised me to elevate her even higher, and declared that nobody but I, she or the nurse should give her drinks that way. So it was concluded that the aides, when on their own, will be instructed to call us whenever C. refuses to drink.

I also filled her in on all sorts of info re C.'s behavior, seizures, eating habits and more. I believe - or at least hope - she was satisfied.

Then she gave me phone number of a dietitian who specialized in the Ketogenic Diet in order to ask her about the Modified Atkins Diet. I promised I'd call - but doubt I will. I mean there's just so much time in a day and so much energy in a 61 year old.

I think that's the last I'll hear from this therapist and believe the staff will now return to their policy of "benign neglect".