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.

Friday, September 23, 2016

Charlatans, snake oil peddlers, quacks, alternative practioners - take your pick and beware!

Hyberbaric oxygen therapy chamber
I have just read a piece (here) about children with autism and their parents' quests for cures. It describes the treatments - sometimes dangerous, usually exorbitantly expensive and unproven - that they try. I was transplanted back to the years the Hubby and I chased a cure for C.'s disabilities because the phenomenon described there is endemic to the entire world of children with disabilities.

As I've mentioned here before, in those days of desperation and blind hopes, we tried every approach and supplement we heard or read of. Often we repeated failed ones with a new "healer" just in case he'd be successful where a colleague of his hadn't.

I once tallied the number of "cures" we tried and reached 35. I never calculated the dollars and hours we squandered in those years when irrationality reigned.

Occasionally, the charlatans offered us free introductory sessions - which we invariably accepted. Once they started charging us, we often stopped the therapies. But there were those we pursued and financed for months - such as cranial sacral therapy, osteopathy (with two different osteopaths), acupuncture (both Japanese and Chinese), chiropractic (also with two different practitioners) and more. Some of the cures came in dark brown bottles and were home-brewed concoctions.

There was one compassionate woman, highly regarded in the world of this poppycock, who offered a grab bag of alternative remedies to C. without charge and indefinitely. After a couple of years, the futility of it finally struck us and we couldn't even bring ourselves to waste any more time on them, free though they were.

A healer in another city explained before the third - and last - free "introductory" treatment that he was "reconnecting C.'s brain cells". Despite the grip of desperation,we still retained a modicum of rationality and never trekked back to him.

I was reminded of his boast when I read this line in the above-cited Spectrum News article:
Once she pays off her $11,000 credit card debt from Cancun, Shearer knows what’s next: the Plasticity Brain Centers, which claims to reconnect neural pathways after their proprietary diagnostic technology pinpoints “the exact brain functions that need treatment.” Skye has tried other brain-related treatments, but this one, Shearer says, seems to take a different approach.
Admittedly more sophisticated than the claim we'd gotten. But then our charlatan wasn't charging big bucks. In fact, while we did squander thousands of dollars, there were far more pricey snake oil cures on the market which we just couldn't afford.  Thank goodness for our financial straits - I now know that some of those were actually risky (for instance hyperbaric oxygen therapy).

In any case, I highly recommend this piece to all you parents considering questionable treatments because there seem to be no other options out there.

Right now, we are still battling C.'s pressure sores, seeing significant progress with most but not all of them. Hoping the new diet - we reintroduced carbs after a hiatus of several years - will herald improvement in C.'s total protein/albumin levels and sore healing.

As for the edema she began sporting this past year, here (over on the right) is what her leg looked like one day this week. The doctor at the wound clinic saw it and wasn't concerned, so I've deleted it from my "worry list" (which is ample enough without as is).

Monday, September 12, 2016

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.

Wednesday, September 7, 2016

Let us all praise paralympians

Tatyana (left) and Hannah in 2012
Today the Paralympics kick off in Rio. 165 countries will participate and The Guardian expressed this hope - shared no doubt by all of us - for the event:
If everything goes to plan, all anyone will want to talk about when the closing ceremony is held on 18 September is how the standard of competition in the Paralympics has never been higher...[and will] feel nothing but optimism for a brighter future in which, rather than having to deal with condescending pats on the head for somehow summoning the bravery to take part, Paralympians are viewed in the same light as their Olympic counterparts.
To mark the occasion, Google has launched an animated doodle depicting the variety of sports in which disabled athletes will participate: 
Note: I would appreciate it if somebody could point out the weightlifter's disability. Too subtle for my drained caregiver brain, I suppose.

As expected, the Paralympics bring to light tales of courage and tenacity that far surpass those emanating from the abled Olympics.
But the one below is in a category all its own...
A ‘Unique Household’

...Born with spina bifida and adopted from a Russian orphanage, Tatyana McFadden, 27, is paralyzed from the waist down. Hannah McFadden, 20, adopted from Albania, born without a femur in her left leg, is an above-the-knee amputee. She uses a prosthesis to walk and a wheelchair to race.

Ruthi McFadden, 17, also adopted from Albania, is the outlier — no wheelchair, no prosthetic leg to pop off at airport security and hand to a T.S.A. agent, as Hannah does for kicks. She has no desire to run the length of a basketball court, let alone a marathon. “I don’t like to sweat,” she tells her sisters.

“Our family is a very unique household,” said Hannah McFadden, legs slung over an ottoman in the living room. “If you took a family photo right now, you got Grandma with an oxygen tank, probably sassing the photographer.” (The oxygen tank comes courtesy of decades of smoking; the sassing comes naturally.)
She continued: “Ruthi talking about all the boyfriends she has. Tatyana wishing she had all the boyfriends. And me saying, ‘Where’s the food?’ You’d have all those different things going on and oh, yeah, and then parents, Deb and Bridget. We have two moms.
Read more about them in the New York Times article here.

Seeing a dietitian

I finally made an appointment with our health maintenance organization's dietitian today in the pursuit of advice on how to cure C. of her newest  condition. (Yes, free so why not). After finally reading  the GP's referral note, which I'd stashed away two weeks ago  I learned it has an impressive medical title: Hypoalbuminemia.

Wednesday, August 31, 2016

Confession: It's so hard to talk to my daughter

With the Hubby overseas this past week, aside from some intensive grand-parenting, I've been home alone with C. I must confess that I've felt inadequate in that setting. I don't break the silence and talk to her enough. For the most part, I do so only when I'm tending to one of her needs when I verbalize what I'm doing. Otherwise, the absence of a response makes it so difficult. At least it does for me.

I'm aware that others are far more capable of doing it and that I ought to try harder and the guilt plagues me for failing to. After all,  it's clear that C. understands at least some of what she hears and that her hearing is keen. She may even comprehend more than is obvious to us. 

But the lack of response is an overwhelming dampener. I've even abandoned reading novels to her, something I did consistently during her meals about two years ago. I find that I need to be positively buoyant to be able to overcome the hurdle.

Do any of you share this challenge with your children?

Update: Just read the results of the urine test our doctor ordered to check for protein in the urine which would help explain C.'s low albumin level in the the blood. Believe it or not, every result was either normal or negative. And, most important, there was NO protein in the urine. So the mystery of the vanishing protein remains unsolved at this stage.

Sunday, August 21, 2016

To stop me from twiddling my thumbs

We came home from our HMO's fund's wound clinic (who knew there was such a creature?) with a laundry list of tactics to trounce the pressure sore plague.
  1. The medicine and bandages we've been using were replaced with totally different ones that I must change twice daily (instead of the previous once). The new bandage is just several layers of gauze drenched with iodine and  taped down over only one corner which we alternate at every change. (All the plastic layers we used were irritating the surrounding, healthy skin). It's in the photo above.
  2. A swab was taken from one of the sores for culturing - must call back in several days for results when we'll adjust antibiotic accordingly.
  3. In the meantime, a course of antibiotic - ciprofloxacin.
  4. Bring C. to a gastroenterologist to figure out why C.'s albumin dropped recently to sub-normal levels. (Low albumin contributes to poor wound healing.)
  5. Consult a dietitian for tips on how to boost albumin levels dietarily.
  6. Make appointment for HMO occupational therapist to visit home and assess C.'s sleeping and sitting equipment. Then, per her advice, order a state of the art new mattress and a new wheelchair - Health ministry will subsidize the purchases if it's done this way.
    Change C.'s position every two hours, including during the night. (Confession: I don't do that; I find uninterrupted sleep just too tempting.)
  7. Do not use C.'s brace for several days - nurse raised that to a week. I gulped, panicked and pleaded with the doctor to permit its brief use daily. I emphasized that without any standing or walking, C.'s quality of life will plummet. He immediately acquiesced recommending I cut a ring of foam padding to place around the foot wound. Moral of that exchange: don't accept unreasonable Dr.'s orders as gospel.
  8. Get a new brace.
The doctor and nurse  at the clinic were incredibly kind and considerate both to us and each other. Yes, you read that right: the doctor and nurse worked as a team. It was a first for me.

With the hubby boarding a flight tonight to his hometown for his mother's funeral, most of the above tasks will on the back burner for a while. 

Here (above) I am sharing C.'s pressure sores with that impressive team at the clinic.

Sunday, August 14, 2016

Still plagued by pressure sores, C. graduates

The inflatable mattress overlay I mention in the post. The cylinder
on the right is both container and pump.

The pressure sores are sprouting like mushrooms after a rainstorm. I now spend 40 minutes daily re-bandaging six of them, with one a double header. Every small sore  blossoms into a whopper.

So I finally contacted the pressure-sore expert whom our pediatrician had recommended (yes, at 21, C. is still in his care; more on that later).

He was very responsive, requested photos of the sores, ordered fresh blood tests along with a visit by an occupational therapist in order to have C.'s sleeping and sitting equipment evaluated.

While in waiting mode, the Hubby took C.'s malfunctioning air mattress to our equipment lending center for replacement. He was told that it was actually a useless model and we were upgraded to the inflatable mattress overlay in the photo above (from here).

We were also told by the expert there that we must limit C.'s time in her wheelchair. She should  be seated only for meals, spending the rest of the day either lying, standing in a stander or sprawled in a bean bag. Live and learn.

But until we can get that new equipment, she still sits quite a lot in her wheelchair.

Today, still awaiting a response from that kind pressure sore doctor re the photos and blood results, I called his clinic. Lo and behold, the kind doctor has disappeared on an overseas vacation that will last until the end of the month but didn't bother to share that with me five days ago.

So I made an appointment with his substitute for this week and will update afterwards

Along with the pressure sores, we have embarked on life with C. at home all day. Here she is last Thursday at the end of her final day of school:
C. on her last day of school

Many people we know - good, well-intentioned folks, some close friends others staffers at C.'s school - have asked us why we aren't putting her into an institution and they all specify one. It's actually a chain of large, closed institutions scattered throughout this country that is highly regarded by the general public and lavishly funded by our government. I've grown weary of delivering my anti-institutionalization lecture. So sometimes I just say "no" and skip the explanation.

It's getting tiresome and infuriating. I mean, when will this society get it? A child isn't somebody you evict and dump on strangers because the going got rough.

Just a year ago, our major concern with C. was the intense summer heat and dehydration which landed her in the ER overnight. Ah, for the good ol' days.

And on a positive note, here's a tour of a stunning playground designed to cater to the needs of children with severe disabilities: Perhaps we can all use this as a model for a neighborhood playground that our children could enjoy.

Wednesday, August 3, 2016

Tackling the tooth delay

C. in the dental clinic's chair
We finally left a dentist's appointment for C. un-cancelled. So, yesterday, a year after her last visit, her neglected teeth were examined and cleaned.

Another one of our daughters, the dear-near-dentist (she's in the midst of final exams) had a look at C.'s teeth two weeks ago. She was horrified by what she saw and kindly shared it all with me. Most scary was the wiggliness of C.'s front lower teeth, caused by her receding gums and her almost incessant teeth grinding.

The receding gums are in turn caused by yours truly. For years now, I've been happily brushing with this toothbrush
which I first touted here back in February 2013.

But all good - and easy - things must come to an end. It seems that that design doesn't clean the gums of larger teeth like C.'s. So on my dear-near-dentist-daughter's advice, I have just switched to a Paro brush. Now I find it impossible to brush all of C.'s teeth thoroughly with it. She fights me - pun intended - tooth and nail.

Well, at the dental clinic, it was suggested I tackle that challenge by either:
  • Taping together a pile of  tongue depressors and placing them in one side of her mouth. Or
  • Taping together two rubber wedge-shaped door stops, piercing the end of one and threading thread through that hole to enable quick removal at the first hint of swallowing by C. I kid you not!
I think I'll just keep struggling to keep C.'s mouth open by hand.

Now, to prevent the tooth grinding, the dentist suggested we purchase a custom-fitted mouth guard that she can wear day and night.
And finally, dear-near-dentist-daughter also urged me to have C.'s teeth x-rayed - something which has never been done. She said they can't be accurately assessed without them.

I dutifully requested them yesterday. But I was told that C. would probably not cooperate without somebody's intervention. Sure enough, when they tried, that's what happened. Since I wasn't willing to expose myself to the radiation in order to hold the film in place, we skipped the x-rays.

So, once again, C. was declared cavity-free. But, once again, we can't be sure she really is.

Sunday, July 31, 2016

While some mock, others rock

If you share my sentiments about Trump and disabilities then you too have been wondering how his egregious mimicry of a journalist with disabilities back in November 2015 was so hastily forgotten. And you will no doubt also be pleased with this poster that is being disseminated by my favorite blogger.

I would add:
And never forget Trump's lame claim afterwards [New York Times, November 26, 2015] that he had never met the reporter, Serge F. Kovaleski, who has arthrogryposis which limits the functioning of his joints.
“I have no idea who this reporter, Serge Kovalski [sic], is, what he looks like or his level of intelligence,” Mr. Trump said. “Despite having one of the all-time great memories, I certainly do not remember him,” he continued...
(Don't know about the memory, but that's undoubtedly one of the all-time great comb-overs/toupees he unabashedly sports.)

A commenter at Elizabeth's blog aptly responded to my comment about how in the world this pathetic behavior was deleted so quickly:
It's not been purged. It's worse than that Most people don't care is the very sad thing about this. Also a reality check. [Rebecca Yourig - July 25, 2016]
Blogger Sandrine Ciron: founder of Fashion Handi
But don't despair about our society as a whole. The intolerant contingent is undoubtedly on the road to extinction even if the pace is so slow we seem to be standing still.

Out of France comes a heartening story about breaking down the barriers of exclusion because of disability.

The second Fashion Handi show demonstrates that plenty of people are ability-blind. You can learn more about the woman with CP who came up with the concept of a fashion show featuring able-bodied models appearing together with models with disabilities. One of them - a man confined to a wheelchair who designs sleek wheelchairs explains: "To be proud of your chair, that's the goal".

Also modeled at the show are trendy clothes adapted to the needs of people with disabilities such as jeans with higher backs, zipper-free opening flaps, smoother seams and elasticized waists.

There's more here. And a YouTube clip here.