Monday, August 14, 2017

A manicure and Mommy hydro

It was a week of firsts for C.

The first was her first hydrotherapy session in a non-therapy pool with only slightly heated water.

The second was her first hydrotherapy session with an amateur therapist - yours truly.

And the third was her first manicure courtesy of E., her caregiver. I don't know how I let her circulate all these years with un-done nails. She always has two sparkly hairpins and earrings but somehow the nail polish was overlooked.

The hydrotherapy went surprisingly well.

Although her floating was not as impressive as it has been in the past, I had braced myself for much worse. What C. did was cross her legs tightly - which I've never seen her do before. This caused her body to tilt sideways.

I was unable to straighten them out despite concerted efforts. But now and then she uncrossed them herself and was then able to float easily without any support.

My guess is the temperature of the water caused the leg-crossing. Hopefully next time she'll be somewhat accustomed to the water and we'll have less of it.

And here she is showing off her manicure.

Thursday, August 3, 2017

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

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]

Sunday, July 23, 2017

Late but elated

C. had hydrotherapy last week. As you all know, it's the one bright spot in her otherwise bland, often bleak, existence.

We had high hopes for a productive session since she hadn't been seizing that day. But when I arrived, fifteen minutes after it had begun, I found her in the tight grip of a novice: see photo below.

The novice told me that she was filling in for C.'s regular therapist who was a no-show that day. She was clueless as to how to work with C., and just clutched her to smithereens.

I immediately intervened, urging her to let go and allow C. to float independently. But she just couldn't do that.

I noticed another therapist in the pool who used to work with C. while she was still in school.

"How about asking her for guidance?" I suggested to the novice.

"How about I just ask her to swap students with me?" she replied.

I couldn't have been more thrilled. Only fifteen minutes of therapy remained but they left me, the therapist and C.'s caregiver, all elated. Not only did C. float on her own she moved her legs to keep them afloat too - something she has never done before.

There is simply no therapy like hydro!

And the next day was C.'s chance to caress her adorable nephew:

Now, she's recovering from a stomach virus that I brought home. Could've done without this but thankfully it's passing quickly.

For those who are wondering why I arrived fifteen minutes after C.'s caregiver had brought her to hydro, promptness isn't my forte and never was.

I read a terrific short story yesterday that expressed my time troubles perfectly. The story's narrator says:
"I'm 9, a solid sensitive, fearful boy. There's a big judo competition today. I never get anywhere on time. I don't know time. I have no understanding of time. Time is beyond me."

Friday, July 14, 2017

Cheers for JK Rowling - and a nod to Keppra

Well, it's been a while and I really can't explain why.

I've been snowed under by ordinary family stuff including caring for a few precious grandchildren for several days. But why I haven't found time to update is a puzzle.

C. decided that she'd better rein in her seizures when her nieces and nephew arrived. More realistically, the only change in her diet and meds that I can credit with the turnaround - and that's very reluctantly - is raising her Keppra dose.

Two weeks ago when she was wracked with seizures I asked the neurologist whether she'd recommend raising Keppra. She liked the idea. So we're now at 2,500 mg/day, divided into two doses

I would have preferred an improvement due to the raised cannabis. But unfortunately that hasn't been the case for several months.

Not that we're about to drop it, of course. I still hold out hope. Perhaps once we get the license for a monthly bottle of THC and can experiment with a daily dose of it we'll see positive changes.

I listened to Christiane Amanpour's interview with J.K. Rowling [link and below] on CNN - twice through! It was music to my ears.

In these parts, we are bombarded with "news" reports lauding the largest chain of institutions for children and young adults with disabilities. Local media outlets cover everything from groundbreaking ceremonies for expansion buildings to visits by local politicians, celebrities and wealthy donors.

Never a negative word is uttered about the popularity of warehousing these most vulnerable children. Certainly, the concept of de-institutionalization of people with disabilities - Rowling's goal - is never, ever raised.

I urge you to watch this Rowling interview - once will suffice.

She's intelligent, articulate and passionate about her organization, Lumos. "As much as possible, Lumos wants to help children return home to the arms of those they love", she told Amanpour.


Friday, June 30, 2017

Summertime and the livin' is none too easy

C. is lying beside me and I'm afraid to move or touch her lest I trigger another seizure.

She has been having lot of them today. Not enough to qualify as status epilepticus, but nonetheless, not a pretty picture.

Yesterday, they were frequent but mild. Today, they're the full blown sort; the ones that engage every cell in her body, contort her face, cause moans and cries and devastate me.

I write this with the expectation and dread of the next one.

Unfortunately, she has no fever - and I mean not a trace of it. The thermometer read 37.3 degrees Celsius rectally (say 99.1 in Fahrenheit terms) which can't be considered fever by any stretch of the imagination. So I haven't given her any Advil. When she gets her neurological fevers, Advil banishes the seizures.

Then there's the THC oil which usually zaps strings of seizures. When I gave it to her this morning, it had no effect. Since that was ten hours ago, I could try another dose now. But I'm reluctant to because we're down to our last few drops of it.

Our neurologist's request from the medical cannabis authority for a new license which adds a bottle of THC to the ten bottles of CBD we receive has gone unanswered.

Our own numerous calls, emails and faxes to the frigging government office have also been in vain. The only response we have gotten was a couple of weeks ago when we received a new, temporary license. It permits the same number of bottles of CBD we've been receiving and makes no mention of THC! 

I wrote that last night. Today she's only marginally better; slightly fewer seizures, but still looking like a rag doll most of the time.

We've emailed her neurologist for her advice and just to "kvetch" a bit. I asked her whether she thought we could raise the Keppra dose although that really isn't a route I relish taking. (C. is now at 1,000 mg of it twice/day.)

Here's a photo of C. (below) taken on Tuesday before this downturn - at her weekly hydrotherapy session.

And here (below) she is last week with her little nephew. The interest they show in her as babies fades fast when they realize she can't interact. By around the age of one, they ignore her.

Sunday, June 4, 2017

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.

Thursday, May 18, 2017

Yay - we're back to hydrotherapy!

C. had her first, post-school-hydrotherapy session yesterday.

She seemed relaxed and at times floated nearly independently - that is, after I donned my "meddling mom" hat and urged the therapist to reduce her support.

But those seizures persisted during the session. A couple of whoppers and many of the minis.

And while I did meddle, I was mindless of the proper gear for C. For instance, I entirely forgot about bringing along Huggies Little Swimmers. So C. had to contend with a weighty water-logged diaper.

The photo shows her contending.

Meanwhile we're giving THC when the going gets tough, and it has been effective the last couple of times. (Despite the bottle's expiry date of 03/17 - it's all we've got while awaiting our new, amended medical cannabis license that will enable us to purchase a fresh bottle.)

Tuesday, May 16, 2017

Piling on the therapies and the Keppra

It's been a rough three days for C. with seizures up the wazoo, some accompanied by fever, others without. Up to eight major ones a day and many small ones involving only her eyes and mouth (too many to count).

THC didn't work its magic. Nor did Advil when there was a bit of fever so I finally raised the Keppra from 750mg twice a day to 200mg twice a day. The neurologist had advised doing that a few months ago but I put it off, hoping that raising her CBD dose would suffice.

The physiotherapist from our HMO came twice last week and is due for another visit today. He does the same sort of limb-stretching that the other one, hired privately, did only minus the white coat and the almond oil massage, and he does it for 15 minutes instead of one hour. Well, these sessions are totally free so some corner-cutting is to be expected.

C.'s spasticity has become rather serious so we'll also persevere with these stretches on our own throughout the day. So far, no results, though.

At this point, we're postponing starting a new drug recommended by the gastroenterologist to reduce spasticity. You know that cardinal rule: never introduce multiple new med variables simultaneously.

And, after a nine month hiatus, C. is having her first hydrotherapy session today.

I'm hoping she'll function as well, or nearly as well as she used to: floating on her back, kicking her legs slightly, scrupulously keeping her face out of the water. But I have a hunch that won't be the case. Stay tuned for her hydro "report card".

The snapshot above, slightly obscured to protect his privacy, is of our HMO physiotherapist at work with C.

Monday, April 24, 2017

For good cheer, move on

If you were seeking a lift from extreme parenting and the demoralization it entails, well, you've come to the wrong address. This post is limited to bad cheer.

For a full week now, C has been running a low grade fever along with other disconcerting symptoms: sleepiness, unresponsiveness, unsteadiness, seizures both major and minor throughout the day.

Neither the blood tests nor her pediatrician's clinical exam revealed any alarming findings and he thinks C. could just have a virus. But he did notice two anomalies for which he's referred us to an abdominal ultrasound and x-ray:
  • "Vertically-oriented abdominal mass to L of midline, partly pulsatile, probably abdominal aorta" (but he assured me it's probably so prominent because C. is so thin)
  • "L-sided abdominal masses palpated, oriented vertically. Suspect stool masses" (and he assured me this is easily remedied with laxatives).
He wants us to do an abdominal ultrasound and x-ray before treatment. So, with Wednesday the earliest appointment date I could get for those tests, until then it's just wait and endure.

On the right is my sketch of what C. has looked like this past week.

Saturday, April 15, 2017

Massage or physical therapy - you be the judge

I finally hired a physical therapist for C. It was the first time she had this therapy since she "graduated" school at the end of August 2016 - and was thrown to the dogs by the powers that be.

Since then her liver crisis and pressure sores consumed all our time and attention. Only now, with those issues resolved, could we focus on her less urgent needs.

I was surprised to discover that few physical therapists will travel to their patients, regardless of the remuneration. And since we aren't up to driving C. anywhere on a regular basis, we were down to one candidate who agreed to come here (she lives a five minute drive away).

The woman was French, nice and gentle with C. But she spent nearly the entire session oiling, massaging and stretching C.'s limbs. Now I'm sure there's no harm in that, and possibly huge benefits of some sort. But it's what I'd expect from a certified masseuse - not a physical therapist.

For the remainder of the hour, she listened to my summary of C.'s medical history and watched me demonstrate MEDEK-standing and describe the MEDEK-walking I used to do with C. in pre-liver-crisis times. (Surprisingly, she'd never heard of that superlative physical therapy method.)

I was impressed by how very calm C. looked and by her repeated "smiles" throughout the session. (Just to clarify: C. hasn't really smiled since her epilepsy struck 21 years ago. But she does stick out the tip of her tongue through the side of her mouth when she is happy and we've designated that her "smile".)

The therapist was confident that we'd see unspecified improvements in the coming week and urged me to call her with a report. But nothing resembling improvement eventuated. In fact for some reason, C.'s standing has worsened somewhat in the last three days. Not that I'm blaming the massage.

Still, desperate times require desperate measures. So with no alternatives around for now, I asked this one to come again. The second session was much like the first. This time, though, I observed more intently and photographed and videoed the routines so that C.'s caregiver and I will be able to do them daily.

But somehow this doesn't pass for physical therapy in my book and so I've resumed the hunt for another therapist who'll work at our place.

Have a look at the photos. What do you think?