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.

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.

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.

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.

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).

Massage or physical therapy - you be the judge

I finally hired a physical therapist for C. It was the first time she had this therapy since she "graduated" school at the end of August 2016 - and was thrown to the dogs by the powers that be.

Since then her liver crisis and pressure sores consumed all our time and attention. Only now, with those issues resolved, could we focus on her less urgent needs.

I was surprised to discover that few physical therapists will travel to their patients, regardless of the remuneration. And since we aren't up to driving C. anywhere on a regular basis, we were down to one candidate who agreed to come here (she lives a five minute drive away).

The woman was French, nice and gentle with C. But she spent nearly the entire session oiling, massaging and stretching C.'s limbs. Now I'm sure there's no harm in that, and possibly huge benefits of some sort. But it's what I'd expect from a certified masseuse - not a physical therapist.

For the remainder of the hour, she listened to my summary of C.'s medical history and watched me demonstrate MEDEK-standing and describe the MEDEK-walking I used to do with C. in pre-liver-crisis times. (Surprisingly, she'd never heard of that superlative physical therapy method.)

I was impressed by how very calm C. looked and by her repeated "smiles" throughout the session. (Just to clarify: C. hasn't really smiled since her epilepsy struck 21 years ago. But she does stick out the tip of her tongue through the side of her mouth when she is happy and we've designated that her "smile".)

The therapist was confident that we'd see unspecified improvements in the coming week and urged me to call her with a report. But nothing resembling improvement eventuated. In fact for some reason, C.'s standing has worsened somewhat in the last three days. Not that I'm blaming the massage.

Still, desperate times require desperate measures. So with no alternatives around for now, I asked this one to come again. The second session was much like the first. This time, though, I observed more intently and photographed and videoed the routines so that C.'s caregiver and I will be able to do them daily.

But somehow this doesn't pass for physical therapy in my book and so I've resumed the hunt for another therapist who'll work at our place.

Have a look at the photos. What do you think?

The liver plot thickens

The good news about C. is scarce these days.

She has still been signing "I want to eat" impressively (by putting her finger in her mouth) and putting the spoon in her mouth until her bowl is empty. But on every other score, she's not doing well. She does her daily MEDEK assisted walking with me - but not nearly as proficiently as she once did.

But most alarming are the awful blood test results which were unchanged today. And along with those, yesterday's ultrasound findings, the outstanding of which were abnormality of texture of the liver and mild to moderate ascites which the pediatrician referred to in his summary as "liver disease".

I can't recall whether I blogged about this but I did notice that C.'s stomach was enlarged and hard about two months ago. Inexplicably, and unforgivably, I brushed it off as insignificant or perhaps weight gain from the dietary changes I'd made on the dietician's recommendation.

There was so much else to tend to that shlepping C. to the pediatrician to have him examine her stomach didn't seem essential. After all, we were sending him photos of her pressure sores which were topping our list of headaches back then. And he didn't urge us to bring her in.

Besides, when we brought her to the wound clinic, she was examined and her fluid retention was declared "to be expected" and "to be ignored". The doctor doing the declaring was an orthopedist and we'd been scheduled to have the vascular specialist examine her.  But when I expressed doubt, the clinic nurse explained  that he was "unavailable". She assured us that this orthopedist was equally competent since all the doctors in the clinic were "one team".

The icing on this catastrophe cake is that after reading the ultrasound summary which we took the initiative of forwarding to C.'s neurologist, she promptly wrote back: "This is beyond the scope of my expertise. You need to talk to your family physician ASAP".

And then came the cherry on the icing: when we asked her whether she had submitted the request to the relevant government licensing office to raise C.'s cannabis dosage which she'd promised to do, she wrote back: "I would stop the cannabis now. There is a problem with her liver and no one knows if this is the cause."

Of course, it's more likely to be related to the valproic acid (which by the way she prescribed). But she isn't buying that theory.

Now I'm afraid she'll request that our license be rescinded.

Doc disses the new drug (THC)

This week brought three "perfect bad days" so we finally cracked open our bottle of THC.

On the first, I gave one drop, waited a few hours, observed no adverse effects, saw another couple of seizures and gave a second drop. Still no adverse effects and seizures stopped.

The following day, C. had a string of severe seizures (or so they were described over the phone by the school nurse). But we were too far away to race over there (at the eye surgeon to plan cataract surgery). So I just advised giving Advil even though it wasn't obvious she was feverish. Eventually, after missing her hydrotherapy because of them, the seizures abated. (so I was told).

When she seized twice at home that evening, and with the bad morning in mind, I gave her one drop of THC. A few hours later, after another seizure, I gave a second drop.

This seemed to render her tired and floppy. She did manage to do her MEDEK-walking for 40 minutes. But she was incredibly and unusually loose-limbed which I attribute to the THC. Not at all terrible as side effects go.

The following day, after an awful string of seizures (approximately eight), I gave three THC drops at once and after just one more drop, they abated.

C, waiting to see the
neurologist. She was
having a very bad day

Yesterday, again a horrific seizure tsunami (around ten), I gave her four drops and again, after one last seizure - calm! Yes, limp, perhaps lethargic, but seizure-free until the evening when she just had one.

Right after the awful morning, which also resulted in a bitten and bloody tongue - as her clothing attests (see photo) - we saw the neurologist.

I handed her the boxes of CBD and THC oil for her perusal and - wham! She blew a gasket. In her gentle and restrained manner, she rebuked me for ordering and administering the THC oil without first consulting her. I explained that I had expected to do that but when the cannabis nurse said the pediatrician would suffice, I opted for that. With our scheduled visit only a week away, I figured I'd notify her, the neurologist, then.

"You could have emailed me first," she noted        .

I didn't want to quibble but the truth is she often takes ages to respond to emails and I wanted that THC asap. Nonetheless, I apologized and promised to halt it after she emphasized that there's no evidence of its efficacy in treating epilepsy. (What choice did I have? We've been through many awful neurologists and don't want to risk losing this one).

She is particularly opposed to using THC with children but when she remembered that C. turns 21 next week, conceded that it isn't a concern here.*

C's VNS implant

The neurologist quickly recovered from her THC meltdown and was her kind and supportive self for the remainder. At my suggestion, she agreed to apply to the Ministry of Health for a new license citing a higher dose. We are still far from the maximum, she said. She also convinced us to submit C. to a second VNS implantation in the near future. More about that next time.

In the meantime, here's a glimpse of the old one.

---
* Once out of the office, the Hubby and I agreed we'd continue giving THC in future tsunami circumstances. It's clear to us it works.

The benefits of nieces and nephews

C. walking, MEDEK-style

Yesterday C. had her nieces and nephew here to stimulate her and she stayed awake the entire day with nary a seizure. (Admittedly that was after a seizure-laden morning and two Advils).

C. and I MEDEK-walked together twice for a total of nearly two hours, breaking our previous record. Hopefully this will see me through whatever trials await us in the coming days. (We never have encores of star performances.)

And, as Murphy would have it, the good was tempered by C.'s  loss of appetite and refusal to self-feed... and I thought we were past that.

A few more mundane changes

C. with the walker
in 2014

We have returned the walker we acquired about two years ago.

For a time, I struggled to walk C. both with the walker and without it. Doing both was exhausting and time consuming and, worst of all, minimally productive. By that I mean that C. hardly ever took an independent step with the walker which, I'd say, counts as abject failure.

But having the device at home, 24/7, and for free was such a bonanza that parting with it was hard. It took several months of total disuse (other than draping clothes on its handlebars) to convince me that C. was never going to walk independently with this walker - at least not as long as it was up to me.

Don't imagine that I've neglected C.'s walking entirely. We still do MEDEK walking once or twice a day. And while it hasn't gotten C. to walk independently - which is the method's goal - it has kept physical deterioration at bay.

And, to judge by her expression, she enjoys being upright, moving and free of restraints on her torso. Even one of the plumbers tending to our plumbing disaster noticed it. I was so impressed - that's more than I can say for many of the professionals who've seen her walk.

Here's the video:


For those of you whose children are not yet walking I strongly recommend MEDEK over any alternative physiotherapy method. Watching the video (above) last night revved me up again. In fact, walking C. today I lowered one of my supporting  hands from her knee to just below it to challenge her more. And she coped well!

C's new air mattress, with air pump attached

But lest you think we now have one less device for C., here's the air-mattress that the Hubby brought home from the center that originally loaned us the walker. The attached box is the electric air pump that keeps it inflated.

The health fund nurse insists that one of C.'s sores - it's small and new - isn't healing because of pressure and this invention will remedy that.

The nurse has pronounced C.'s large sore as "progressing nicely" but it certainly isn't healed yet. I'm so thankful for his intervention because this thing is way out my care-giving league

C.'s new look: A fishtail braid and two stitches

Last year, one school aide would occasionally braid C.'s hair this way.  It never failed to impress me and I was convinced it was a feat way beyond my coiffing capabilities.

But, last night I finally Googled "braids" and found these clear for-idiots instructions plus diagrams for it. I also learned it has a name: The Fishtail Braid...

Here is the result of my very first attempt.

C. was resistant at first, as she always is whenever I do her hair, but eventually resigned herself to the process. Note: this braid is easy to make but took me twice as long as a standard one.

Today, my braid conquest was overshadowed by this:

I was walking C. at home, MEDEK-style, when she suddenly doubled over in a seizure and suffered a cut above her mouth. It looked small and the Hubby and I were tempted to just clean and bandage it ourselves.  But it bled pretty copiously and I didn't want C.'s pretty face to be scarred so we trekked to our health fund's main offices. There, a surgeon told us that it was actually a very deep gash warranting two stitches.

Moral: Never judge a cut by its appearance.

EEG enigma and dosing in the dark

Last week was our quarterly visit to the neurologist, but my cataract and dental issues left no time to blog. I'm glad to have a few minutes to share what she told us.

The visit began with C.'s first EEG in several years. She was so calm that an anesthetic was unnecessary. She even stopped grinding her teeth after I stroked her cheeks. The technician asked me to intervene because the grinding made the EEG go haywire. After that it was smooth sailing. C. even fell asleep.

To my layman's eyes, the lines on the screen looked a lot less zig-zaggy than in the past. But that may just be wishful thinking at work. The neurologist herself explained that the zig-zags definitely indicate epileptic activity but without seeing her previous EEGs - something she had no time to dig up - she couldn't comment on improvement. Hopefully she will eventually compare them (and confirm my rosy assessment).

She then gave the green light to raise the cannabis dosage by another 50% of her current dose. So we can go up from her current 46 drops/day to 65 drops/day and then stop raising it. That final dosage will only be a moderate one. The doctor doesn't recommend reaching the maximum. She says the dearth of reliable studies leaves cannabis dosing in uncharted territory. A higher dose might even be detrimental.

So here are a few numbers to crunch:
- C.'s oil contain 15% CBD and 0.75% THC which equals a 20:1 ratio. 

- Her 45 drops/day equal 7 mg per kg. 

- We aim to raise her to 65 drops/day or 10 mg per kg 

I'll keep you posted as to her progress. 

At this point, in addition to a reduction in the number of seizures on most days, I have noticed an improvement in her walking. (It's the MEDEK assisted sort.) She seems to stand straighter and takes bigger steps with her right leg. The left does not step independently. 

But I still crave a touch of cognitive progress. No headline-grabbers; I'm too realistic for that. Just a few new, minor, non-verbal reactions from C. would do me fine. 

And while on that topic, we still haven't heard from the neurologist who promised to canvass his colleagues about minocycline as a treatment for cognitive impairment. We emailed him a reminder today. I didn't ask the neurologist we saw last week about the drug because she's an epileptologist, so I figured this subject is not her field. 

Other brief updates:

Our grand-daughter's aplasia cutis was officially declared history by the neurosurgeon this week. No more bandaging and no follow up visits. We are one very thankful family this week.

My article about institutionalization of people with disabilities - sadly, it still thrives here - was published last week. After its umpteen revisions, the piece didn't feel like 'my baby' anymore so I wasn't quite thrilled. But at least the message it conveyed is circulating. Today's tally is 75 tweets and 135 recommends

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.

The tightrope

I met with C.’s physical therapist yesterday after six weeks of repeated rescheduling. She’s only in the school three times a week which complicated things.

I had low expectations but was pleasantly surprised. She was highly complimentary of the work I have been doing with C. and of C.’s performance. She also had several excellent tips for modifying the exercises I do. She worked with my daughter some seven years ago for about a year. I was unimpressed.

But I must confess I was very uninvolved with the school program back then. I just immersed myself and C. in hours of Medek exercises at home under the guidance of a trained instructor whom we trekked to once every few months. I never shared what I was doing with the school staff. Nor did I solicit their input.

About two years ago, the Medek exercises, which had helped my daughter immensely, became impossible for me to continue. C. had grown too tall and I too old (mid-fifties). So I started doing easier walking exercises and retained only one authentic Medek walk (holding her right above the knees).

It’s not easy to maneuver that “staff-tightrope”: expressing my preferences and enlisting their help while nurturing a friendly relationship with them. They often have fragile egos and with the slightest hint of criticism you can evoke their resentment. Also, the staff in C.’s school have grown accustomed to parents who stay out of sight and mind. What a blessing for the therapists afflicted with burn-out or laziness. And, as we know, there’s no shortage of those.

This week, a mother of eleven was sentenced to four years in prison for abusing her children. She had been doing so with impunity for many years until one cold night, when she locked her mentally disabled son out of the house in shorts and a shirt. His cries finally prompted the neighbors to call the police. I remember reading, prior to sentencing, that several of the older children, now married, defended their mother by blaming her behavior on the birth of their disabled sibling. It made her lose her mind, they argued. So having a disabled child entitles a parent to torture others?

I was disappointed with the sentence. So was the woman’s lawyer but obviously not for the same reason.