A rare encounter with competent professionals

C. gets support on one side only
of her wheelchair

C. enjoyed four hours of quality attention at a rehabilitative center last week. That includes the long waits between sessions with each of the professionals: a physiotherapist, an occupational therapist, an orthopedist and a neurologist. But I’m not complaining.

After the treatment that we've grown used to at her school - actually no treatment at all - this annual attention fest was a breath of fresh air. It came courtesy of our health fund and produced some valuable advice.

The orthopedist told us that C.'s scoliosis cannot be treated and did not even examine her spine or send us for x-rays as we'd done in the past at this venue. From observing her, he concluded that she isn't a surgery candidate at this stage. Rather laid back, but fine by me. I'm not up to any drastic intervention now. And, from past Googling I've done of scoliosis, this advice seemed sound.

He told us that the unevenness of her legs - a 1.5 cm difference which last year's orthopedist first noticed - is within the range of normal and also does not warrant action. Not even the 0.5 cm. shoe lift we had attached to the sole some months ago. But it's fine to leave it.

He noted that the side support we have installed on the right side of her chair is causing her to “escape” it by leaning to her left. He urged us to remedy this by supporting the left side as well. (The physiotherapist at C.’s school had recommended one-sided support because she was leaning only to that side.)

C., trying a different walking device

I off-handedly pointed out what I considered a minor aberration: one crooked toe that overlaps its neighboring toe. Now the doctor perked up. Although I assured him it does not hurt her, he warned that it could cause skin problems in the distant future. He suggested a silicon insert between the affected toes. It’s got to be the right size. If it's too big, it could irritate her skin even more. And it’s got to be in for precisely 2 hours a day.

Honestly, I worry about some of these doctors, even the ones with admirable intentions. Which planet are they from? Did he really imagine I’m going to remove and put on tights, socks, silicon, brace and shoes an extra few times a day to prevent a possible future-and-not-too-serious skin irritation? Of course, I kept this to myself and assured the good doctor I'd use the piece.

The occupational therapist: I mistakenly assumed that Tablet work was one of her areas of expertise and brought it along. Turns out she only checks hand and arm spasticity and inquires about care and equipment needs at home. She pronounced C.'s arms still capable of the full range of movement. And I was especially pleased that she attributed that to the arm exercises I do with C. nearly every day.

She noted that sitting in a wheelchair for long stretches without a table contributes to the spasticity we’re seeing in her arms. Getting a table for the wheelchair will also alleviate that.

C.'s foot before the
silicon toe-separator

She also recommended that we get a chair with a hole in the seat for showering C. in our shower stall. Currently, C. is showered 3 times each week at school after her hydrotherapy sessions. When they are cancelled or school is closed, I shower her while she stands up in our bath at home. The wheelchair just barely fits in the bathroom and it's quite an ordeal.

It sounded like a great idea but now that we're home it's clear that our small bathroom with the shower stall will not accommodate such a chair. So it will be more of lifting C.'s legs into the bathtub for now.

We also shared the challenge of getting C.'s wheelchair into our sedan. The hubby must entirely dismantle the chair every time we take C. out with us. The OT told us we're eligible for government assistance to purchase a new wheelchair every three years. Needless to say, this is yet another of those well-kept secrets that parents of children with disabilities in this country only discover by accident -  if they're lucky. We'll definitely investigate it further.

C.'s foot with silicon toe-separator
inserted

Physiotherapist: This was the most encouraging meeting. We related the difficulties we're having with the Hart Walker. The time, effort and two adults required just to insert and remove C. from the device.are beyond ridiculous.

Now add the fact that she's been spending 40 minutes three times a week inside the Hart Walker for nearly a month without one independent step! The unavoidable conclusion is that C. and the Hart Walker were not meant for each other.

So with little fanfare, the physiotherapist brought in another less-torturous walker from a different maker. And within minutes C.’s  was loud and clear about her preference: she took a couple of independent steps with her right foot!

Fitting C. to the trial walker

Neurologist: As I've written here, we achieved a very high blood level of Valproic Acid three weeks ago. Nevertheless, C. still seizes daily. This neurologist, who does not treat C. regularly, looked at her blood test results from 10 days ago and agreed that we cannot go any higher. He added that the results indicate that her body is tolerating the current dosage of 700 mg twice/day well. He said we might still see better seizure control with the current dosage.in the near future.

I had presumed that since we have now been giving C. this dosage for one month we can't expect a further improvement. Thrilled to learn I was wrong.

Our next step is to stop the Rufinamide (brand name: Inovelon). C. is now on three meds (Valproic Acid, Rufinamide and Rivotril/Clonazepam). Piling on the meds was the standard approach years ago. But, as I have learned from my daughter-in-law the pharmacist, current recommendations are to give no more than two meds.

Inovelon, the newest anti-epileptic drug around, never improved C.'s condition at all. I will be glad to eliminate it. And as we all know, these anti-epileptics have a reputation for clouding the mind. Perhaps reducing C.'s regimen to only two drugs will – if we score a miracle – boost her cognition.

OMG, somebody reign me in. This optimism is getting out of control again...