Tuesday, January 6, 2015

A day-long saga

That's me walking C. for the PT
Last Wednesday was a long, exhausting day revolving entirely around C. So here is a long, exhausting post about it.

The first half of the day was spent at a rehabilitative center for C.’s annual multi-disciplinary assessment by a  physiotherapist, an occupational therapist, a social worker, a neurologist and an orthopedist.

In previous years, our health fund footed the bill but warned us after last year’s visit that they would no longer do so. Nonetheless, we tried our luck this year again. Since C. is now an adult, the decision was no longer in the hands of that same health fund pediatric neurologist who has been the bane of parents’ lives throughout this city for decades. Many children have been denied therapies or specialists’ exams by this health fund thanks to this s.o.b. So many in fact that TV and newspaper exposes about him  have abounded  - but to no avail. 

In any case, our approval for funding this year arrived without a hitch.

Now we don’t usually hear much that’s earth-shattering  from the team at this center but the visit always proves worthwhile in some way.

The neurologist, reminded us that we had told him C. seizes 3-4 times a day. Since we used to count only the ones she had awake and out of bed, that tally reinforces our conviction that C. has improved on cannabis. We’re now giving her 14 drops, 3 times/day of the 20:1 ratio, a.k.a. 15% of CBD and 0.75% of THC. (Why these percentages translate into a 20:1 ratio is something I’ve got to ask the nurse next time we speak.)

I mentioned to the neurologist the research into minocycline as a treatment for cognitive impairment. He was totally unaware of it and promised to inquire about it among his colleagues. I’m eager to hear what information he culls so we can start C. on the drug asap.

The physical therapist was impressed with C.’s MEDEK walking which we demonstrated for her and in particular with her straight torso. (Photo on the right.) But she noticed that C. barely lifts her right foot when stepping. Instead, she drags her toes on the floor. She thought a brace might help (she currently only wears one on the left foot) But in order to determine whether it would actually be beneficial, she recommended first trying the cheaper "Dictus" (video here)

I’m reluctant to try either of these. From my experience, C.’s walking doesn’t take well to even the slightest adjustments. So I fear introducing either device would do more harm than good. But I plan to try the Dictus just to be sure. 

The occupational therapist referred us to an article about restraining the strong limb in order to strengthen a weak one. I have limited the work I do with C. to her right and stronger hand/arm, ignoring her weaker left one entirely. This therapist urged me to focus more on her left since it might improve her brain/cognitive function. The words “cognitive improvement” are like light to a moth for me. So I intend to give C.'s left hand some attention from now on while holding down her right.

The orthopedist scrutinized C.’s overlapping toe for an inordinate amount of time and actually concluded that she’s a candidate for surgery to repair it! Since she walks a maximum of one hour per day and only with constant support, this seemed like overkill and we told him that. So he drew another solution out of his bag of tricks: bringing C. to an orthotics expert who will make a custom “toe separator”.

I might add that the standard silicone insert (photo on the right) I’d tried on this doctor’s advice last year produced sores. I can assure that expedition is nowhere near the top of our “to-do” list.

I had to remind the orthopedist to assess C.’s scoliosis which he promptly did by glancing at her position in the wheelchair. “No need for any intervention” was his verdict.

Needless to say, I wouldn’t write home about this orthopedist  

The social worker, poor woman, was subjected to one of my rants about C.’s school and about the limited options available for children with profound disabilities after “graduating” at 21. She listened patiently, commiserated and if. she found me tiresome – like my immediate family tends to - then she did a great job of hiding it.

Following my tirade she advised having our pediatrician send a referral note to the home-care advisory unit of our health fund. They’ll assess our home for accessibility and might offer to fund some minor improvements.

After this we headed to another city, with C., to pick up her two bonus bottles of cannabis. Our always-supportive neurologist arranged for a new license from the Ministry of Health. This one permits us 30 grams per month which translates into 6 bottles instead of the previous 4.

As we approached that city, the hubby realized that we had left our license at home. The distributor insists on the presentation of that piece of paper before each hand-over even though they’ve got everything on line. We knew they’d give us a hard time but figured they’d ultimately hand the bottles over.

Well, we figured wrong.

The guy who runs it did give me a hard time – cannabis wafting  from his every pore. But, never losing his cool, he would not budge. My kvetches and pleas fell on deaf ears (he was very cannabis-cool). The only way he’d part with those bottles was if I presented an official police declaration that I’d “lost” the license. He kindly wrote down the address of the nearest precinct.

The chance of my getting such a document seemed slim to nil and would undoubtedly be a lengthy process. But the alternative was driving back the following day, along with C. (mandatory, since hers is the sole name appearing on the license) and with the license. All told, about four hours total on the road. By this time the hubby and I were deep into the blame game. We had by then picked up our dental-student daughter from her campus and it was “less than pleasant” in the car.

To make this already very long story shorter: the policeman at the front desk whisked out the desired document before I’d even finished my sob story and filled it in according to my dictation. I was out of there with the signed and stamped piece of paper in three minutes. 

But this joke of an “official” declaration satisfied  the distributors. Within seconds the liquid gold was in my hands.

Like I’ve said: when it comes to cannabis here, we’re practically neck and neck with Colorado.

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