Some inspiration from India

I had planned on personally giving C. this week a hydrotherapy session at the pool I swim in every day. I've watched years of her therapies and figured that by now I could tackle it myself. For years I've dreamed of doing so when the therapy pool at her school was closed for vacation. But good intentions were as far as I got.

One reason was the challenge of getting her there and the other was my reservations about using a barely heated pool vs. the well heated therapy pool.

Now, with her caregiver here to help me. it seemed feasible. The therapy pool will be closed for the next three weeks and I really am curious about how C. would react to the water. If she'd respond well, it would mean a huge savings of money.

So I was suitably psyched up and set aside Thursday for our session. Then one of her nearly-healed pressure-sores re-erupted with redness all around the center. The wound clinic team reopened it, prescribed a fresh course of oral antibiotic and forbade swimming for at least a week.

This is exactly one year after the blasted sore first erupted! That's got to be a world record for persistent pressure sores.

The other "good" news is that the government's department of health has responded to our request for a raised dosage of CBD and one bottle per month of THC.

It was "Nothing doing!"

I'm flabbergasted. This is supposed to be one of the most progressive countries in the world with regard to medicinal cannabis and a leader in research into its benefits. What gives?

We'll see what the neurologist has to say about this verdict. I dread having to cope with C.'s seizures without any THC.

But I won't end on that negative note.

I have a soft spot for success stories starring people with disabilities. Remember that remarkable Argentinian kindergarten teacher?

This story hails from India and is as much about a plucky young woman with Downs as it is about her devoted parents who gave her a restaurant of her own to run. All three of them have a message for other parents of children with disabilities and for the children themselves.

The story is all the more remarkable against the backdrop of the general plight of Indians with disabilities and specifically with Downs Syndrome.

The video is at https://www.facebook.com/thebetterindia/videos/1613392548695052/

From a World Bank report:

India has some 40 to 80 million persons with disability. But low literacy, few jobs and widespread social stigma are making disabled people among the most excluded in India. Children with disabilities are less likely to be in school, disabled adults are more likely to be unemployed, and families with a disabled member are often worse off than average.

And the plight of those specifically with Down Syndrome:

Downs Syndrome affects 23,000-29,000 children born in India every year. Though the numbers are alarming but there is very little open dialogue on this topic in India. Though it is not fatal, not in the developed countries but in India it continues to be fatal. This is mostly because of the low awareness levels and outdated medical facilities.

India has the highest number of people suffering from Down Syndrome in the world. The numbers are alarming but what is more frightening is the fact that this condition is fatal in India due to negligence, lack of awareness, and obsolete medical and technological facilities... Out of the 23,000 to 29,000 kids born with Down Syndrome in India every year, the survival rate is only 44% for those who have congenital heart disease [Source]

Those pesky pressure sores

Me injecting iodine into the pressure sore
on C's foot

We'd hardly resumed C.'s hydrotherapy when a 10 month old pressure sore - presumed nearly healed - sprang back to life. It was her devoted caregiver, E., who decided it warranted another visit to the wounds clinic.

I, on the other hand, was certain that my squeezing the thing had returned it to the healing route.

Turns out I couldn't have been more wrong. The wound expert (she's the clinic nurse and the doctors take her advice!) determined that C. needs oral antibiotic and a switch to this novel bandaging protocol: You syringe some iodine into the wound before applying a patch of iodine-soaked mesh and finally, a gauze bandage. (I snapped myself doing it - the pic above.)

And this relentless wound has also robbed C. of her hydrotherapy session this week. Apparently it would be bad for the wound and bad for the other swimmers.

Now please wish me luck: for the coming week, C. and I will be home on our own - with E. during the day - while the Hubby is overseas. I'm already counting the hours till his return.

Here's a drawing based on a photo of a couple of weeks ago when C.'s nieces and nephews were all at our place. That's another one of her weird bandages on her arm.

My daughter thinks she's a surfboard

Stiff as a surfboard: Trying to get C. into her wheelchair today

Once again, it's a mixed bag of news regarding my daughter C.

We did fresh blood tests a week ago which showed that her liver has improved and her albumin level is within the normal range, though just barely. Also, without taking any diuretics, she is free of fluid retention anywhere in her body for the first time in years.

(Admittedly, that’s the layman’s take of the Hubby and me. The extremities are easy to assess; the abdomen, less so but we’re both pretty confident it’s all clear).

Another perk of that albumin rise is the dramatic progress in the healing of her pressure sores. I’m already allowing myself to dream of life without daily bandaging. (For those as ignorant of albumin’s significance as I was a few months ago, note: low albumin level means failure of sores to heal.)

The doctors, in particular the gastro, had been convinced that C.’s liver was seriously diseased, possibly with a chronic autoimmune illness. You’d expect them to now backtrack and blame the Valproic Acid for the liver mess – which was their original theory. But they haven't. They just concede that C. is a “complex case” and “a puzzle”. (The pediatrician did mention a viral infection as the possible culprit but didn’t elaborate.)

Presumably at our next visit to the gastro, we’ll hear some firmer hypothesis. For now, we’re just reveling in C.’s rehabilitated liver.

But, as I said, this is a mixed bag so there's been no partying to celebrate all the above. Because, despite those positive developments, C. hasn't been functioning very well. She has resumed feeding herself and we're really thrilled about that. But she has also become extremely stiff and won't bend her knees either to walk or to be seated. In the past, she has had a tendency to lock them periodically but she always loosened up eventually. These days, they are constantly rigid to the umpteenth degree. It takes two-three adults to seat her. And when I try to walk her, she just goosesteps.

Seizures have been more or less under control (around two a day) with a raised Cannabis dosage: 22 drops, 3 times a day. She’s also getting Keppra – 750 mg twice a day and Carnitine 500 mg, 3 times a day.

We continue to enjoy our daily help with caring for C. She’s a fantastic young Australian woman who just earned her BA in chemical engineering. She arrived without any experience in this field but is a quick learner, reliable and very compassionate towards C., which has enabled me to sleep more at night, dote on my grandchildren and, so far, keep that Takotsubo at bay.

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).

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.

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.

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.

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.

On excising pressure sores, cataracts and the R-word

Cataract removal in medieval times [Source]

C.'s sundry wounds - cropping up in all sorts of unexpected spots - have practically turned me into an RN. 

We had just put her on oral antibiotics for the big whopper when we noticed at shower time a fresh and grotesque injury on her foot. She has been wearing the same brace on that leg only, and without any problems for years. So, needless to say, I suspect something happened at the hands of the school staff. But without proof, there's nothing to be done.

In any case, we were contemplating (and dreading) a trip to the ER but first consulted with our neighbor/friend/pulmonologist. He told us we would only need the ER in the case of a red line creeping up C.'s leg or a fever. It was a welcome reprieve.

Now, after 4 days of cephalexin, I can thankfully report to say that both sores are healing nicely and C. is even able to walk a bit. 

In the midst of that pressure-sore mess and stress, I indulged myself with a bit of cataract surgery.

Now, in the post-op period with 11 eye drops per day and no bending, lifting, swimming or touching the eye, sleeping with an eye shield and NO MASCARA, I'm determined to delay my second eye's surgery for as long as I possibly can. 

Just before the above health issues erupted, we were visited by the sweetest, kindest elderly woman you can imagine. C.'s teacher had recommended I call her to find out whether she could help us stimulate C.

Now this woman has spent her entire adult life as a special ed teacher and lecturer to students in that field. But since retirement, she has spent much of her time designing and fashioning activity boards for blind and multiply handicapped children. She first visits them to assess their needs and capabilities and then produces a custom-made, zero-tech item using inexpensive and handy objects. She does all this voluntarily, free of charge and with a smile and congenial chatter to boot. 

Her boards weren't appropriate for C. who, we all agreed, needs music to become even slightly engaged. The Hubby promised to order online these very simple little music-playing devices that can be incorporated into one of her boards. 

At the door, she disclosed to us that one of her adult grandchildren is retarded too and told us all about her. 

Yikes, there it was, that much maligned "R-word".

But it was used utterly innocently with not a whiff of insult or disdain. I'm sure that even the most ardent "Spread the Word to End the Word" activists would have given this woman a pass. She simply belongs to a generation that's unaware of the word's negative connotations.

But I was reminded that my son - my most reliable source of relevant information - alerted me last week to the passage of a bill in our country’s parliamentary committee for legislative matters on the use of the R-word. When enacted - which is apparently a done deal - it will replace it with "intellectually developmentally disabled" in all government material.  

In local parlance, the R-word is a very common insult. So I'm always jolted anew whenever I receive  some official document with that same word in its letterhead. Since we lag behind in so many other realms - most egregious of all the de-institutionalization of people with disabilities - I presumed that this move must be late too. 

Instead, I learned that the US, for instance, only took this plunge in October 2010 when President Obama signed into law Bill S. 2781, “Rosa’s Law”, removing the terms “mental retardation” and “mentally retarded” from federal health, education and labor policy and replacing them with people-first language like “individual with an intellectual disability”, according to Spread The Word To End The Word, an ongoing campaign by Special Olympics, Best Buddies and other supporters to eliminate the use of the “R” word.  To date, most but not all states have eliminated the use of that word from their laws.

John Franklin Stephens

Some will argue, not unreasonably,  hey, it's just a word and don't actions speak a lot louder? For them, here below is an eloquent response from somebody directly targeted by the R-word.

Sometimes I feel like Professor Van Helsing, or maybe Buffy the Vampire Slayer. I keep trying to kill this thing and it just won’t die. Of course, my nemesis is the “r-word,” not a vampire.

Like Dracula, the r-word just sucks the life out of those of us who fall in its path. It spreads like an infection from person to person. It seems as though perfectly nice people who “mean no harm” get bitten by hearing others using the term while “meaning no harm.” And so it goes, from person to person, until it becomes so common that even Presidential Chiefs of Staff, radio talk show hosts, movie characters and famous political pundits use the nasty slur — then say they “meant no harm.”

To all of you who use it, let me say it one more time, THE R-WORD HURTS. You don’t have to aim the word directly at me to hurt me and millions of others like me who live with an intellectual disability. Every time a person uses the r-word, no matter who it is aimed at, it says to those who hear it that it is okay to use it. That’s how a slur becomes more and more common. That’s how people like me get to hear it over and over, even when you think we aren’t listening.

So, why am I hurt when I hear “retard.” Let’s face it, nobody uses the word as a term of praise. At best, it is used as another way of saying “stupid” or “loser.” At worst, it is aimed directly at me as a way to label me as an outcast — a thing, not a person. I am not stupid. I am not a loser. I am not a thing. I am a person. [Source: "I Am the Person You Hurt When You Say the R-Word", John Franklin Stephens, Special Olympics Global Messenger, in Huffington Post, May 5, 2014]

Not minding the minor maladies

There have been new challenges piled onto to the old and constant ones. 

I briefly mentioned C.'s bedsore which erupted one month ago. The health fund home-visiting nurse vetoed hydrotherapy until total healing. Fortunately, the school nurse and our pediatrician declared that advice to be overkill so we've been sending her to the pool - albeit without mentioning it to the home-visiting nurse. He is the sweetest person you'll ever meet and I'd hate to offend him with our disobedience. 

So the only hassle has been re-bandaging the wound after every hydro session and otherwise every 48 hours. Oh, and, of course, the hassle of looking at it. 

Next, this week brought us edema in C.'s feet and hands. Now we've dealt with the feet version and found that religiously raising them while C. is seated and lying is very effective. But the hands are new to us. How do you raise them? Is there a different treatment for them? The school nurse told me to ask the physiotherapists. I should do that. I may actually do it tomorrow. 

But for now I'm just letting this one ride.  My past encounters with the physio staff haven't been enjoyable and I don't relish speaking to any of them.  I did ask the teacher to consult with them on my behalf. So I may get an answer that way. 

Finally, I was informed by today's hydro-therapist who in turn told this to the nurse: C. has a sore on her tongue. Not to belittle tongue sores but, with C. feeding herself really well lately, I just can't rev up the anxiety over a sore which I can't even see and isn't bothering anybody (other than the hydro-therapist).

If you ask me, and I wish somebody would now and then, I'd say epilepsy and profound physical and cognitive impairment are enough all on their own. I really don't need all these other minor maladies added to the mix. 

P.S. Psst. I don't want to invite a jinx by broadcasting this so mum's the word: C.'s seizure count has been low these past few days. Could we be headed for the post-benzo good times?