Tuesday, July 31, 2018

Time for a new neurologist

We visited C.'s neurologist last week. 

Just a reminder: this doctor was on the team that rendered C. semi-comatose with a barrage of drugs in November 2017 to combat her status epilepticus. Her specialty is the treatment of headaches. We had no clue about that when we began bringing C. to her. She came highly recommended by C.'s pediatrician.

At this latest visit, we related C.'s fever and seizure woes to her and showed her a video of C.'s aquatic skills. We noted that the raised dose of Keppra and the addition of Vimpat, which has been C.'s regimen since hospitalization, has left her in the same state she was in pre-hospitalization. No improvement whatsoever. We'd like to try her on Keppra alone again, we said.

The doctor then told us we ought to consult an epileptologist. For me, that translated into: "This case stumps me; it's not my field of expertise. Try an expert." No news to us. But we reminded her that the neurologist who helped rescue C. from that near-coma in 2017 and is a colleague of hers, advised us to use her as a conduit to him. We can't consult him directly because he doesn't have a practice in this country. He earns his living from home by assessing scans from overseas patients and advising treatments. And then, once a month he spends a week in the neurology ward where C. was hospitalized last year.

After the neurologist assured us she would seek that other neurologist's input, she added, almost as an afterthought: "I have a feeling that the Frisium we gave her in the hospital would help her. Add it on." 

The Hubby noted we don't want any more benzodiazepams in C.'s life and inquired whether Frisium is in that drug category. The doctor conceded that it is - but that "We'll start her on a low dose and raise it very gradually so it shouldn't cause her to be sleepy the way it did in the hospital".

"Sleepy" is a generous term to describe C. in the hospital. As I can't overly stress, what she most closely resembled was semi-comatose.

The doctor claims her goal is to rise to a therapeutic level of Frisium and only then begin to wean her off Vimpat. She left us with instructions on introducing the Frisium. But none for the weaning of Vimpat.

Needless to say, we haven't filled the prescription for Frisium and have booked an appointment with that specialist epileptologist.

It's nearly a week since the visit but no word from this neurologist about her consult with the other neurologist. I didn't really expect her to, though.


Through it all C. has somehow managed to advance her walking to this: here (above) is some evidence from a few nights ago.

Sunday, July 29, 2018

This terrific therapy needs a new name

To be perfectly clear, even in my wildest fantasies I don't see C. acquiring any sort of occupation. 

But, misnomer aside, we finally re-introduced Occupational Therapy to C.'s regimen this week. She hasn't had it for years. Even while still in school, she rarely received any and never with positive results to show. 

We've been accepted into a pilot project sponsored by a local organization which provides participants with a personal basket of therapies selected by their parents and funded by the sponsor.

The therapist we selected was the only one we could locate in this city who gives receipts and was willing to work in our house. 

I was initially disappointed when she entered on Monday evening for the first session: Young, bubbly, her mouth emblazoned with dark red lipstick, she didn't appear up to the challenge. But that impression dissipated seconds later when she warmly approached and addressed C. 

She first spoke the local language. But when I pointed out that C. hears English almost exclusively, she switched to that with ease - though she is far from fluent in it. 

She took a history, examined C.'s arms and hands, noting what she termed their "surprisingly good condition". Then asked me what C. is capable of doing with her hands. I showed her C.'s pointing for "yes" and putting a spoonful of food to mouth. She gave the performance rave reviews. Despite my engrained cynicism, I really believe her praise was genuine. 

Oh, and while I prepared C.'s food for the eating demo, the woman grabbed the opportunity to have C. pop some balls into a cup.

Finally, she laid out her goals for C. Four very modest, realistic skills she plans to try and impart. She warned me that they will take time and perhaps only half will be achieved. I think she was amazed by my enthusiastic response.

Tuesday, July 24, 2018

The swing

Our swing project is progressing in slow motion. The Hubby spoke to the inventor/manufacturer who is based in another country and who said he would find us a contact person in our country to proceed with it since the guy we were originally referred to has no interest in this project. Evidently not enough cash in it for the local fellow.

Proteus Mirabilis revisits

The picture on the left is my work
Last week, C. treated us to some more spikey fevers so it was off to the pediatrician again for a thorough checkup. 

While in the waiting room, I snapped a shot of a painting I did and which I gave our doctor many years ago in gratitude for his unflagging devotion to C. As you see over on the right, he has it hanging right next to a Mary Cassat. His generosity knows no bounds.

But we could have avoided that trek to his clinic since he suspected it was a rerun of C.'s Proteus Mirabilis (a version of UTI - urinary tract infection) as soon as he heard she had fever without any apparent symptoms. 

But when I called her in advance of bringing C., the nurse at our local health insurance clinic was extremely reluctant to take a second catheter-urine-sample.  

The explicit referral we had from C.'s doctor was to do just that. But the nurse felt it could introduce infection and that C.'s fevers could have been caused by aspirational pneumonia (even though I assured her she had no related symptoms). She urged that a full clinical exam should be done first. 

I wasn't a match for her. But our perenially sweet doctor was truly pissed off when I related all of that: "I hate to pull rank, but..." was his response. Anyway, long story short, as I said, we did the exam the following day. The nurse obliged us with her catheter and now C. is half-way through her course of Zinnat

The new challenge is preventing another recurrence. A few of the doctor's tips: Don't let her become constipated (who knew that could trigger a UTI?). Keep her well hydrated. Give her cranberry juice.

We have a neurologist's appointment lined up for this week which the Hubby arranged. We'll probably go without C. just to discuss the meds she's on. 

Since they aren't delivering any more control than we had prior to her hospitalization back in December 2017 for status epilepticus, I am keen to lower the Keppra and remove the Vimpat. That was her pre-hospitalization regimen.

I am dreading this encounter with the neurologist because she was one of the doctors in the hospital back in December who opted to barrage C. with meds rendering her near-comatose. The hitch is, though, that we can only access the wise neurologist who saved her from all those meds via this neurologist. The wise one doesn't treat patients outside the hospital ward.

And who would have imagined that the ubuquitous but unnoticed straw would one day become a contentious item? And central to the fight for disability rights too? Well, that day has arrived. The issues are explained here: "I need plastic straws. Banning them puts a serious burden on people with disabilities".

Tuesday, July 10, 2018

Counting my blessings


I know I haven't written for a while. But there just wasn't anything earth-shattering to report and blogs aren't meant to be tiresome, right?

But sometimes raising C. is like that - devoid of drama, the same old same old. No progress, no light at the end of the tunnel.

And trying though that is, it may not be the worst-case scenario. I've mentioned before that I collect my granddaughter from her kindergarten once a week. It's situated in a building that houses a center for afternoon activities for children with disabilities. Some would be termed "severe", I suppose, but none approach the gravity of C.'s.

I watch them longingly. Their parents, I imagine, must bemoan their children's impairments, mild or moderate though they are. And indeed, many must be supervised closely every minute which is why the center has an cadre of young volunteers who patiently guide, coax, sometimes drag the children and teens away from trouble and to various productive activities.

But this week I observed one of those children, many of whom have Downs as this girl of about ten did. She sat on the ground of the playground where my granddaughter and her little brother played. The volunteer aide at her side walked off for a few seconds to tend to another child. This girl, apparently uninterested in the equipment or in her friends, rocked herself a bit and then scratched her red cheeked face ferociously. 

Next, she grabbed a passing child's ponytail and pulled it hard. As I ran to intervene, the victim's brother rescued her and then made for the girl with Downs. When I explained to him that the girl didn't understand what she'd done, he backed off. .

Upon her return, the volunteer aide gathered that something had happened and asked me for details. Then she and another volunteer exhorted the girl with Downs to keep her hands to herself, apparently a mantra that is frequently drummed into her, clearly to no avail: an instant later she was digging her nails into the leg of one of the aides.

I felt momentary relief that C. doesn't pose such problems for us, regardless of the steep price we pay for her "good behavior".

Here (above) is C. at the beach during our extended-family beach getaway this past weekend.

Thursday, June 21, 2018

My misdiagnosis

Proteus mirabilis
I'm still wiping the egg off my face.

For the longest time, I've been carping about C.'s neurological fevers. In recent posts, I've noted their increasing frequency and severity. The Hubby and I even wrote to the neurologist about it last week.

But for certainty's sake we brought her to the pediatrician on Wednesday for a clinical exam.

He found nothing pathological. But our thorough prize-of-a-doctor ordered blood and urine tests nonetheless. If those were clear, he said, it would be safe to presume she's really got rising neurological fevers.

On Thursday, after the visiting home nurse drew blood, C.'s fever spiked to 40.2 Celsius (about 104.4 Fahrenheit)!

So despite the difficulty involved, the Hubby rushed C. to the local HMO clinic for the nurse to take urine via a catheter and then rushed the specimen to another clinic for transfer to the lab. (The visiting nurse, a male, refuses to insert catheters into female patients.)

It was immediately clear that C. had a urinary tract infection.

So within an hour, we'd started her on Cefuroxime. Since then, her fever has been steadily dropping. She's back to her usual slightly elevated temperature with an amazing, fluky 36.8 C thrown in last night! In Fahrenheit, that's 98.2. I can't remember her ever having a reading that low.

Her pediatrician surmises this infection has been simmering (and C. silently suffering, of course) for a while.

Today the urine culture results arrived: Proteus mirabilis

It's actually quite a work of art (above).

As for the moral of this story, I'm sure it's obvious. Never presume anything about our complicated children who can't convey to us what they're feeling.

Tuesday, June 12, 2018

Febrile fun and games

C. kicking really well during
last week's hydrotherapy session
C. has been quite unwell these days.

I always feel ridiculous describing her that way when the fact is she is always "quite unwell". But what I mean is she's been running fevers of over 39° C and vomited several times yesterday.

Needless to say, to cap it all off, there were seizures. But, oddly, the seizures weren't any more frequent than with milder fevers. In fact, they subsided without the lowering of fever.

So today she'll be checked by her pediatrician who will tell us whether she can go to hydrotherapy. Tuesday is the one day that our local therapeutic pool admits females. We are all eager to see her in the water, the only context where she flowers.

Last week, while back floating, she kicked vigorously with both legs for the entire session!

Still no word from the local Liberty Swing distributor who promised us he'd deal directly with the reluctant municipality.

And still haven't located an Occupational Therapist or a Speech Therapist experienced in cases like C. who gives receipts. Without names we can't proceed with the pilot project we've been accepted to. The idea is to provide C. at home with the services and therapies she would receive were she warehoused in an institution. Currently, in this country, she can't.

UPDATE: After a thorough exam today, the pediatrician has declared C. fit for hydro. While he couldn't find a cause for her fevers, he recommended doing some blood readings, testing her urine to eliminate UTI and having her elbow wound seen at the wound clinic to eliminate infection. He doubted either is causing the fever. If the tests prove negative, we'll be left with a diagnosis of neurological fever that has climbed higher than ever before. Did I really believe there were improvements on the horizon?

Wednesday, May 30, 2018

Frustration overflow

First a swing update:

The Hubby met with the local distributor of that enticing Liberty Swing I am trying to have installed in our city. Currently there are just two in this entire country, both in a city that's over an hour's drive from us.

The parks department of our municipality won't permit us to donate and install it in one of its playgrounds without first winning the approval of some committee. The first step toward that approval is a written request. But here was their response to the email I sent detailing what we'd like to do:
Equipment of this sort has never been installed in our city. We need to examine the technical details of this item of equipment and determine whether the municipality will be able to maintain this type of equipment. Only after examining the above topic and receipt of authorization from the relevant bodies will it be possible to install such a swing and to maintain it. We will be in touch with you in order to survey possible optimal venues for installation of the swing.
To be clear, Liberty Swing's website lists 215 such swings extant throughout the world - excluding the two in our country. So we're not taking about inventing the wheel here.

But the distributor assured us the ball is now in his court. He'll deal with the municipality directly and hopefully move the project to fruition.

I'll still tackle the crowdsourcing, of course. We'll see whether he delivers on his promises.

C. is consistently unpredictable these days. We never know whether she'll hand us an hour or so of hard seizing or remain calm. If she seizes, we never know whether it will be accompanied by central fever or not.

When I put her brace and shoes on, I can't predict whether she'll stand erect, walk nicely, bending and straightening her legs. Or whether she'll just tilt her torso sideways and keep her legs stationary.

At mealtimes, I never know whether she'll place her spoon into her mouth independently and swallow her food quickly. Or whether she'll drop her spoon, need to be fed and then store each mouthful in her mouth for eternity.

Definitely not an easy period.

I've been writing locally about my pet peeve - warehousing children with disabilities - and growing increasingly frustrated with my failure to have an impact.

This country's largest chain of warehouse institutions is constantly sprouting new, greedy tentacles. It is partnering with a growing list of organizations, several of which claim to champion true equality and inclusion for people with disabilities. They should know better.

One of its many outrageous operations is a "prisoner rehabilitation" program whereby imprisoned criminals are bused several times a week to its institutions to interact one-on-one with people who have profound disabilities.

Some of the prisoners are serving substantial sentences. But the institution insists they have all been vetted for safety and even permits them to change out of their prison garb into civies during their visits. Yet they concede that the men aren't permitted to interact with female residents or with minor residents. Nor are they admitted to the hydrotherapy pool.

Hmmm. Sound safe to you?

My written inquiries have revealed that in all likelihood no other institution in the world "rehabilitates" prisoners in this manner. Two major prison service entities - one international, one local - assured me they have never heard of one.

If you are aware of such a program, I would very much appreciate your sharing details of it. I would also welcome any tips on how to foster de-institutionalization in countries that are resistant to that transition.

Like mine, of course.

Wednesday, May 9, 2018

That stubborn significant scab

We're plugging away at that new style of assisted walking despite minimal headway.

But as a serial banger-of-my-head-on-the-wall, giving up isn't an option. Besides, Hubby will bring C. to the wounds clinic once again tomorrow. Turns out that a large scab [see below] on C.'s foot that's been a fixture for about two years has not been examined by the medicos there for ages.
 
That's not because she hasn't been to the clinic in that long. Hubby and C.'s caregiver have been bringing her there every couple of months to have her sores assessed. The doctor and nurse haven't been concerned about any that they saw. But they weren't shown the foot scab! I'll leave it at that.

So how does that relate to C.'s walking?

Well, I've got this dream - probably the pipe sort - that after that stubborn scab is removed at the clinic, her walking will improve dramatically. After all, it's on the foot that wears a brace which unavoidably presses somewhat on that spot. Stranger things have been known to happen so who knows?

Here's an updated photo of the self portrait I've been working on. As I mentioned, the toll of special parenting is plainly evident:
We sent our approval request email to the municipality for this city's first Liberty Swing several days ago. Still no response.

Not surprised. The municipality has a reputation for inefficiency. For now, the highlight of C.'s week remains her hydro session at which she just shone yesterday, kicking with both feet!

Saturday, April 21, 2018

Watching, obeying, seething

I've been diligently obeying the physiotherapist's instructions, straightening C.'s left leg, bending her right and refraining from walking with her other than the few steps back to her bed.

Here's the way I do it when I don't have a second pair of hands to assist:



We've nearly completed the recommended two weeks of this and I can't discern an iota of improvement. C. still bends her left leg most of the time and locks her right exactly as she did before. A return visit to the physio seems unavoidable. Wonder what his next Rx will be?

Every Monday, when I pick up my granddaughter, I'm exposed to many children and young adults with disabilities who enjoy afternoon activities at the center where her kindergarten is. Most have Downs, a few isolated children are in wheelchairs, most are rambunctious, many seem to give their volunteer aides a challenging time. I watch them enviously; if only my C. were capable of just a fraction of the what they do.

I've begun the process of acquiring a wheelchair-accessible swing for a park in our city. We currently don't have any. In fact, it seems there is only one in the entire country - in a distant city.

My first step was to locate and speak to the appropriate person in the municipality and learn from her what is required to accomplish that. Next, I will email them details of the swing, the location we'd like and its cost. We now await a response from the swing's manufacturer regarding its price. We intend to crowd-source for its funding.

Here's the swing I'm talking about:


I'm already day-dreaming of putting C. in it and watching her face illuminate.

In the meantime, our leading local institutionalizer of people with disabilities continues its concerted PR campaign. The goal is to convince the public - and particularly, the public with cash to donate - that those institutions are the salvation of the disabled population.

Lately, it's been harping on the "inclusion" theme. Ad nauseum. Of course, you may find that perplexing. I mean, in what conceivable way is locking people up in isolated, large institutions remotely related to inclusion?

Well, nobody over here seems troubled by that conundrum. Except for the Hubby and I. And so the cash - from donors and government alike - continues to flow to those warehouse institutions. And I continue to seethe.