Monday, April 9, 2018

The physical therapist weighs in


Just heard back from C.'s new physical therapist.

I had sent him video clips of her "walking", if you could call it that, with her left knee perpetually bent and her right one locked. It was a far cry from the desired performance.

Walking C last week
His recommended treatment: A two-week moratorium on that "walking". Instead we're to do brief sessions - ten minutes each, three times each day - of standing her, straightening the left and slightly bending the right knees while rocking her from side to side.

Of course, halting the walking for that long will be a torment for me. Seeing her upright and moving, even in so rudimentary a manner, always boosted my spirits somewhat.

But I'll try to obey these instructions - for the most part - and of course will keep you posted on results.

Tuesday, April 3, 2018

Not giving up yet

We're persevering with the new walking technique which we learned from a kind, capable MEDEK physiotherapist who hails from South Africa. [See this post.]

While C. still hasn't gotten the full hang of it, we're seeing some progress.

She even gives her personal version of a smile (poking out the tip of her tongue) occasionally while we practice.

Monday, March 26, 2018

I'm definitely kicking the optimism habit

The MEDEK therapist works
with C.
It was with with indomitable optimism that I left the physiotherapist a week ago.

Now I'm usually overcome with that emotion whenever we try a new drug or treatment for C. And it can be a huge pain. Because when that something new doesn't live up to my fantastic expectations, I plunge headlong into despondence.

So it was with this therapy session. The method favored by this therapist is MEDEK, the same one we've been using at home with C.

When I brought C. to him nine years ago, he told us that she was too old and big for him to work with. But he and the Hubby bumped into each other recently, hit it off, and he then offered to give it a shot despite her age and size.

At the session, I showed him the sort of walking I've been doing with her. He advised me to replace it with an alternative. It's not strictly MEDEK but he felt it would suit C. better. (He said that even MEDEK's creator, Chilean Ramon Cueves, uses it occasionally).

Here he is (above) trying it out on C.

When C.'s caregiver and I also tried it out there, C. was quite cooperative. So you can understand why that optimism kicked in.

But at home, it was another story. She just refuses to straighten her left knee in advance of stepping with her right leg. I'm forced to straighten it myself which makes the whole exercise far more frustrating and exhausting than it should be.

Of course, it also means that C. is much further away from returning to stepping independently the way she used to about two years ago (pre-liver damage).

Thursday, March 8, 2018

A great school - but not for the students

I gave a lift yesterday to a woman I recognized from C.'s "alma mater".

Of course, during the ride I asked her about the state of the school since C.'s graduation. It had switched, at that time, from a private to a government-run school so I was curious about the impact that ensued.

The woman raved about the change. When I pressed her for details, she cited "benefits and gifts to the staff" noting that. teacher's aides, for instance, now work only five instead of six day weeks and only until 2:30 pm.

All in all, she gushed, things are great.

Then I asked her how the administrative switch had affected the children. Were they receiving more therapies, for instance? (While C. was there, the number of therapies per week was piddling. At best, one half hour session per week of physical, occupational and speech therapies).

"No", she divulged readily. "They receive fewer therapies."

"But everybody seems pleased," she added. "I don't hear any parents complaining".

I choked, silently... This woman was unabashedly lavishing praise on the new administrators although the children were suffering.

And those children are entrusted to her care. Not very reassuring, right?

Thoughts anybody?

PS: We didn't manage to get to the neurologist this week as intended. But, for now, we aren't feeling the urgency since C. has grown weary of that mysterious vomiting and has even cut back on her central fevers. The Hubby plans to meet the neurologist next week to discuss strategies for reducing seizures. Yeah, I know, he'll go without C. since she's been thoroughly examined by the pediatrician just last week. Yeah, I know, we never seem to give up the futile fight.

Friday, March 2, 2018

Fever, stress, vomit. Life.

True, we might have gotten bored with the same old, same old. I mean profound developmental impairment both physical and cognitive, central fevers, cortical blindness and refractory epilepsy. They might not have kept us on our toes. So, it's understandable that we've now had retching and vomitting added to the mix.

It's been nearly two weeks since those new symptoms debuted. Last week's exam by the pediatrician didn't explain them so we did blood tests on Monday. We also consulted by email with the neurologist..

The pediatrician - who has kindly acquiesced to keeping C. on despite her nearly 23 years - thought that perhaps one of C.'s anti-epileptics is the culprit. The one added on last is Vimpat/Lacosamide. I recall that the neurologist who saved her from a near-coma during her last hospitalization said then that her Vimpat dosage was too high. But he ultimately left that unchanged because she recovered just by his removal of several other drugs that the hospital team had been administering her.

But the neurologist treating C. now - a member of the above hospital team - dismisses that theory.

The Hubby and E., the caregiver, are convinced that phlegm is to blame for the vomiting. But I'm not. She just shows no signs of phlegm, doesn't have a runny nose and isn't coughing. Besides, she's never vomited from a cold in the past.

We also emailed the gastro who had prescribed Carnitine to repair her liver when it was damaged by the Valproic Acid medication. She's been taking 250 mg. of it three times a day for over a year. Then this past weekend we went away for 24 hours with the entire family. I forgot to pack in the Carnitine and C. did not seize, vomit or retch the entire time.

So I hoped we'd found the cause. But now, after receiving the gastro's OK to stop carnitine, it's clear that was wishful thinking.

So the mystery of the vomiting remains.

C.'s Central Fevers have also increased in frequency and are stumping everybody as well. Her neurologists don't seem to have experience with them at all. In fact, while C. was last hospitalized one of the doctors posited that we have it all back to front: the seizures are inducing the fever.

Now, that's such a presposterous hypothesis, I can't decide where to begin debunking it. One, C. also has seizures without fever. Two, when she has a fever with seizures, they stop once the fever is lowered. Three, central fevers are a known phenomenon. I didn't invent them. But nobody on the team was listening.

I'm hoping that our neurologist will be able to track down a doctor who is familiar with central fevers. We plan to meet up with her for a face-to-face consult next week, something I'm not eager to do since the last time we spoke, in the hospital, I sensed she wasn't enamored with my ideas. (They tended toward pleading for lowering the meds, asap).

In the meantime, it's just stress, stress and more stress. Here's a self-portrait in the works that illustrates that.

Monday, February 19, 2018

That same old Sisyphean fight against the system

C. being evaluated for a new wheelchair in August 2017
(We're still waiting for it to be approved)
It's been six months since we lodged all the paperwork necessary to convince the health officials in our government to approve a new, subsidized wheelchair for my daughter, C.

In the meantime she continues to spend most of her waking hours in the ill-suited, uncomfortable wheelchair selected for us ten years ago by the "seating expert"/physical therapist in her school.

At our request, our current seating expert who works at a rehabilitative hospital and who specified the new wheelchair, inquired again about the delay. She wrote us that the government person said the requested treatment has been delayed "and they promised to hurry."
Now, even if a wheelchair were delivered to our door tomorrow, it couldn't count as "hurrying". Of course, we are bracing ourselves for a further interminable wait.

And after a two week phone pursuit, we finally landed the physical therapist from our health fund. He showed up last week and put C. through his routine of extremity stretches, advising us to do them with her every day. He said he would return in a month since we're only entitled to 12 sessions per year from the fund.

When the Hubby requested that he provide us with a recommendation for hydrotherapy for C., he poo-pooed its benefits since, after all, our child "doesn't live in the water".

That's the same response, verbatim, he gave us last year.

So once again, the Hubby patiently educated him about the phenomenal benefits our daughter derives from hydrotherapy. And once again, he agreed to recommend that the health fund allot her their maximum of 6 sessions.

That's per year! And note that the rules say we can't get any hydrotherapies via the health fund without his recommendation.

Yes, it is somewhat Kafkaesque trying to keep your severely disabled child at home rather than locking her away in an institution.

This is particularly true in a country as enamored with the institutionalization of people with disabilities as ours is.


The physiotherapist working with C.
I was shocked to learn this week that it admits representatives of our leading chain of large, closed institutions into our classrooms to "educate" pupils about disabilities. So we have our most impressionable population being taught that "inclusion" equals isolating people with disabilities from both families and communities.

Here is what the website of that chain says about its brainwashing program:
"We couldn’t be prouder of this program, which is the fulfillment of a dream for [us]. Working together with the Ministry of Education, we are educating towards change on a grand scale and seeing immediate results countrywide,” said its director and the brains behind the program. The benefit that he raved about was: "a noticeable spike in youth-led volunteerism and social activism initiatives."
My apoplexy peaked when I read that
"to increase this outreach program's geographic reach and professional depth, we have partnered with two non-profit organizations, both leading voices in the fight for disability rights in in this country."
Et tu advocates for the disabled? I have written to one of those non profits about this bizarre partnership and will share with you any response I receive. (Postscript: A day later, none)

Wednesday, February 7, 2018

Some help please: How do I best fight neurological fevers?

From "Best personal cooling devices" here
This is a plea to anybody who has grappled with central/neurological fevers in an epileptic. I'd love to hear how you tackled them.

C. has had them periodically for about a decade.. But in the past week they have become significantly more perturbing. They occur at least once a day and don't respond to the 400 mg.of Advil which previously zapped the fever and the concomitant seizures within minutes.

I've spent one to one and a half hours sponging her down with wet cloths before the seizures abate.

Googling didn't contribute much. First it alarmed me with this line:
"[Central] Fever is also associated with poor prognosis in patients with stroke and brain injury"
I did learn that such fevers are generally unresponsive to antipyretics so Advil's inefficacy is standard. And also that "surface or intravascular cooling devices" are recommended. I had never heard of such devices so I found this: "Comparison of Two Surface Cooling Devices for Temperature Management in a Neurocritical Care Unit", [Ther Hypothermia Temp Manag. 2017]

C. in the grip of a central fever a few nights ago
So I'm now off to the pharmacy to search for one.

As for for input from C.'s doctors: when she was hospitalized 2 months ago, we mentioned her fevers repeatedly to the treating team. They were all utterly uninterested in the symptom. In fact one of them averred that the seizures were probably triggering the fever rather than vice versa.

Of course, I know that's not the case. C. does seize at times without any fever. And, once her fever is lowered, she stops seizing. So it's really a no-brainer.

Saturday, February 3, 2018

The hunt for CBDA

I used to believe that this country is a medicinal cannabis paradise. We've got an abundance of doctors willing to apply on your behalf for a license (and that's a pre-requisite). Provided your ailment is one of the many that the government's health officials recognize as treatable with cannabis your license will arrive within a month. We've got nine suppliers to choose from.

But this week disillusionment struck. After a concerted search for CBDA, we have concluded that it is definitely not sold in this country. Every one of the suppliers I contacted told me that either they'd never heard of it or had but didn't sell it.

What is it?
Cannabidiolic acid (CBDA) is a chemical compound found in the resin glands (trichomes) of raw cannabis plants. In this case, raw means unheated and uncured. Basically, raw cannabis is fresh flower and leaves trimmed directly from the plant. CBDA is the acidic precursor to the more widely known molecule cannabidiol (CBD).] Source: https://www.cibdol.com/blog/368-cbd-science-the-difference-between-cbd-and-cbda
It is readily available on line but a rep of our supplier has warned me that importing it is illegal. She noted that our government-issued user license only permits us to receive the specified products sold by our chosen local supplier.

In any case, it appears that none of the online producers ship to this country. We're still awaiting a response from the ones we've approached.

We're very disappointed by this state of affairs. After consulting our cannabis guru, Elizabeth (https://elizabethaquino.blogspot.com/) and reading further about the product on line, it seems that CBDA is now our best option.

CBD seemed to help C. back in 2015 when we started her on it. The number of daily seizures dropped and she even enjoyed isolated seizure-free days. But that's a faded memory. Her "normal" now is a daily minimum of around 4-5 seizures along with long strings of them on average four times a week.

Elizabeth also advised tweaking the dosage of CBD and THC. We reached the maximum dose of 25 drops of CBD as recommended by our neurologist about 18 months ago. We've remained at that level ever since. But last week I began lowering it. We're currently at 23 drops. I also raised the THC to 4 drops. We give those doses 3x/day.

It's a shame that there is nobody here, neither neurologist nor cannabis supplier, who can guide us more effectively. I'm tired of all this groping in the dark.

Despite her constant seizure assaults, C. managed once again to perform nicely in the pool. Here is a video from her last hydro session a few days ago:

Tuesday, January 16, 2018

That pot of gold

C. gets hydrotherapy
I was thrilled with C.'s hydro session this week where she surpassed last week's performance. Here she is floating unaided (over on the right).

Her walking has also been advancing. Still nothing like what it was pre-liver saga but better than it has been since her liver recovered.

She's actually sturdily on her feet cooperating slightly while I move her legs. We do this for 45 minutes every night. It's so strenuous that Ive apparently injured my left hand in some way. For the last week, I've been waking up after about five hours of sleep with numbness and pain in my left fingers.

I unearthed a hand brace which I bought many years ago. (That's no mean feat in my chaotic household.) The exercises I was doing back then with C. triggered similar symptoms in the same hand.

Me walking C. today
I've now been wearing it during the walking and while I sleep for a couple of days with amazing results.

UPDATE: I wrote all that a few days ago but things aren't looking so rosy now. We get periods of intense and repeated seizures for which I give either Advil or 20 drops of Cannabis THC, or both. We're also treated periodically to those tiny eye seizures that lock her trembling eyeballs into the left side. The latter aren't as visually alarming as the whoppers but they're still very disconcerting. Needless to say, she doesn't function at her peak while in their grip which can be for over an hour.

We're at the same 25 drops of Cannabis CBD, three times a day, 3 drops of Cannabis THC three times a day, 1,500 mg. of Keppra twice a day and 100 mg of Vimpat twice a day. Still haven't learned if and how we can buy that CBDA. So, for now, I am at a loss as to what changes to make.

That pot of gold - seizure control - seems more elusive than ever.

Tuesday, January 2, 2018

New year, new campaign, new drug regimen

C. in the hydro pool a week ago
Last week, C. had her first hydro session since being hospitalized. We were all blown away to see her float with her usual finesse as if she hadn't just been through a 3 week hospitalization for status epilepticus.
 
And the previous day, I gave her THC for a sudden seizure surge. That's happened a few times lately. Occasionally she has a fever so I only give her Advil to control them. But with her status experience still so fresh, each increase in seizures is unsettling. 
 
I've been busy writing about my pet peeve: institutionalization of people with disabilities. As I've shouted from the rooftops, that practice is rampant and accepted in these here parts.
 
During C.'s hospitalization, one of the doctors on the team suggested to the Hubby: "Why don't you put her in some sort of medical facility?" That was after the team had reined in her seizures with a cocktail of powerful drugs that left her near-comatose. We were wondering how we'd care for her at home in that state. The "send her away" suggestion was that doctor's response. (Here's what happened afterwards.)
 
I was encouraged to learn about a new local grass-roots movement against institutionalization. Its specific goal is to win government-funded personal aides for people with disabilities along with the right to live wherever they choose to within the community. Exactly what I've been hankering for! Our national center for human rights for people with disabilities is promoting the campaign.
 
A creative approach to achieving that is to dissuade those benevolent people who volunteer at and donate to such institutions from doing so. Lumos - founded by J.K. Rowling - is at the forefront:of that push.

Here is what Georgette Mulheir, Chief Executive of Lumos had to say about that: 
"More than 80 percent of children in the world’s orphanages have at least one living parent and most have relatives. They should be at home with their families, not in institutions. What orphanage children and their parents really need is to be reunited, with all the supports and services that will enable those families - no matter how poor - to give their children what they need to thrive and reach their full potential.

J.K. Rowling, the founder of Lumos, who has spoken out against orphan voluntoursim frequently on Twitter, could not have put it better: “ Voluntourism is one of drivers of family break up in very poor countries. It incentivizes ‘orphanages’ that are run as businesses. Globally poverty is the no. 1 reason that children are institutionalized. Well-intentioned Westerners supporting orphanages perpetuate this highly damaging system and encourage the creation of more institutions as money magnets.”

Yet evidence suggests the number of children going into orphanages in some parts of the world is increasing."
Wishing everyone a happy, healthy, seizure-free and de-insitutionalized 2018!

P.S. Last night I began giving C. a daily dose of THC. For the next couple of days, it'll be just one drop 3x/day but I'm planning to raise it gradually. I'm winging this; no doctor has recommended it but Elizabeth Aquino - my cannabis guru - gives it to her Sophie with CBD.