Wednesday, October 18, 2017

Meeting the merry-go-round

This week, at the age of 22, C. finally had her first playground ride.

Not that she hasn't been to playgrounds often. Most offered.the latest, trendiest equipment. But none of them had anything C. could use. After I mentioned disability-friendly public-space equipment last month [here "A small cannabis victory and a mysterious laugh"] and in August 2016 [here: "Still plagued by pressure sores, C. graduates"], I learned that in our hometown there's a wheelchair-accessible merry-go-round.

So this week we drove twenty minutes to the huge playground behind the city's zoo. The said merry-go-round stood alone among many other state of the art gadgets for the non-disabled. I only found it after a careful search because there's no sign anywhere to point it out.

C. isn't giving anything away, as you can see in the photo but it was truly a worthwhile outing. The ride, imported from the UK, was safe, easy to use and a real novelty for her.

Yesterday C. had her first hydro session in two weeks because the therapy pool had been closed for vacation. While I couldn't be there to watch, her caregiver took dozens of photos and it was clearly a success.

Back at home I snapped C. looking particularly beautiful:
But just to emphasize the cruel unpredictability of her epilepsy, within five minutes of that shot she was in the grips of a fierce seizure.

Monday, October 9, 2017

Uplifted by Downs

Isaac Levya, actor
It's been a while since the last post but not much has happened. Still the daily 3-5 intense seizures which wear me down.

So we finally wrote to the neurologist for guidance, enquiring specifically about starting a daily dose of THC to try and tackle them. (We now thankfully have a precious new bottle of the stuff.)

She recommended that we raise the dose of Keppra by 250 mg/day. But our THC idea didn’t appeal to her. She noted that a colleague who is more knowledgeable about cannabis assured her there is no evidence that THC affects seizures in any way, notwithstanding our anecdotal evidence to the contrary.

Nevertheless, she OKed one drop of it/day maximum.

For now, we’re trying the additional Keppra, so far without success. We’ll give it 2-3 weeks and then return to the previous dose of 2,500 mg./day. Afterwards we’ll try that daily drop of THC. Not that I have any hope a micro-dose like that will help. To zap C.’s long strings of seizures, we give 17 drops.

I’ve been encountering many Downs children lately when I pick up one of my grand-daughters from kindergarten. She attends a semi inclusive kindergarten. That translates into a small group of Downs students joining her “typical” class for a couple of hours each morning. The group then returns to its segregated class for the rest of the day.

I know, I know, that’s just token inclusion and the school could do more. But it’s better than none at all.

I mention this because I’ve noted how longingly I watch the Downs kids. I envisage the rosy life we’d have if only C. had been blessed with Downs instead of the disabilities she’s lumbered with.

That’s quite a switch from the days of my pregnancies when my deepest dread was giving birth to a Downs baby. It seemed the direst scenario possible.

Live and learn.

A propos of Downs Syndrome, I just learned of a film starring a Downs actor, "Any Day Now". As usual, I’m playing catch up – the film was released back in 2012. It hasn’t aired yet on TV in these parts so I’ve only seen clips from it on YouYube. It strikes me as a gem and the many awards it’s won attest to that.

Playing alongside its stars, Alan Cumming and Garret Dillahunt, is a young actor with Downs, Isaac Levya. The film is about a gay couple in the 'seventies trying to adopt a child with Downs Syndrome and the legal battles they face along the way. In an interview [here], Dillahunt describes Levya’s professionalism and how, during filming, Levya would occasionally tell his co-actors: “Give me some quiet; I’m trying to get in character”.

He attends acting school, auditioned for the part and endearingly discusses his acting experiences here.

I live in a place where mothers are still known to abandon Downs newborns in the hospital and where some who do bring them home later institutionalize them. Success stories like Isaac Levya's are particularly uplifting in this environment.

Friday, September 8, 2017

A small cannabis victory and a mysterious laugh

Since Wednesday, I've been revelling in giving C. her full dose of CBD. That's when our cannabis provider notified us that the government's health authority granted us a new license with the increase we'd requested (more like begged for) in our monthly allotment of cannabis.

This license entitles us to take that extra bottle either as CBD or as THC. So we've got one bottle awaiting us for August which we'll take as THC. I intend to begin experimenting with a very low daily dose of THC.

Then, starting with our September batch, we'll opt for an extra bottle of CBD bringing our total to 11 per month.

It's unclear why the government officials acquiesced after initially refusing. But C.'s neurologist earnestly went to bat for us with a written complaint and a nudge to her colleague with some position in the government's cannabis section. Presumably her efforts played a role.

All this has renewed my pride in this country's trailblazing in the field of medicinal cannabis. Close to 30,000 citizens are license holders and we are slated to become a major medical cannabis exporter.

But back to C. She has been seizing several times a day without running a fever. That's why I intend to introduce daily THC, though the Hubby wants me to run it past C.'s neurologist first.

C. enjoyed two hydro sessions this week, one with me as therapist, the second in the heated therapy pool with a professional hydro-therapist.

Upon her return from that session she began to vocalize - a lot - until late that night. It resembled laughter. But the Hubby and I were creeped out by it. I was convinced she was just getting creative with her seizures. Her caregiver, E., insisted it was a positive step.

Here's a brief video of the sound so you can judge for yourselves.


Whatever it was, we've only heard it once more, two days later.

And as the summer draws to an end, here's a suggestion for those still enjoying hot weather: a disability-friendly beach equipped with special chairs that maneuver easily on sand and water. You just fly to Italy and ecco là: real "access to the sea".

A snap from the beach as captured in the NYT article:

Here's a description of the beach.

Sunday, August 20, 2017

Water and oil

I'm pleased to report that C.'s second Mommy-hydro stint far surpassed her first. She hardly crossed her legs at all which enabled her to center her body and float independently most of the session.

Looking forward to this week's session.

We are still pursuing our quest for eleven (instead of ten) bottles of Cannabis CBD along with one bottle of THC per month.

In response to our request,the government bureaucrats who supervise the issue of medical cannabis have determined that a daily log of every CBD dose administered to C. over the last year is what's missing in their lives.

The recommendations of C.'s neurologist, along with all the requisite paperwork already submitted, just didn't cut it. So we've dutifully supplied them with our log.

A hospital-based neurologist to whom we brought C. years ago now apparently occupies a position of influence over the government's medical cannabis office. Our current neurologist has solicited his intervention.

All we remember about the few visits we made to him with C. years ago is that he routinely asked us "So, what do you think?" and "What would you like to try now?" We never received a suggestion from him. For obvious reasons, we didn't stick with him for long.

Let's hope he'll be quick and obliging now.

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.