C. gets dumped

Last week's hydro and C. is with the replacement therapist

As you regulars are by now aware, hydrotherapy is unequivocally the highlight of my daughter's life. We go to great lengths and expense to give her this perk.

I've posted numerous photos and videos of her hydro performances. And we couldn't ask for a better therapist.

So I was blindsided three weeks ago when that therapist informed me she would cease her work with C. and swap with another therapist.

While I do consider the one she's swapping with to be competent, she can't compare with her previous one.

And here's the reason her "ex" gave: the woman hasn't been feeling well recently (she cancelled last week's sessions) and was told by her doctor that one cause of her symptoms was stress. He advised her to eliminate as many stress triggers as possible. Turns out our C. was top of her "hit list".

You're probably as baffled as I was until she explained that she always dreads that C. will seize in the middle of a session.

She said she hopes I'm not offended.

Now, since I've never blamed myself for C.'s epilepsy, I can't fathom why I'd take offense. But I sure am disappointed and confounded.

C. has rarely seized during a hydro session and, even when she has, she's recovered within two minutes. And this same therapist has years of experience with epileptic children at C.'s old school.

But the bottom line is that it stresses her now.

What helps me understand her situation is equating it with my driving. Once upon a time, I was fairly adept behind the wheel and capable of inter-city trips with relative ease. But I'm so jittery now, I never leave our city limits and only transport our grandchildren on brief, familiar routes - and never on highways.

Fortunately, C. has yet to scare away her Occupational Therapist or her Speech Pathologist. They both seem rather pleased with her responses to them. The OT is working on her grasping and releasing of objects and the SP on her responses to questions of preference with her hand. Pointing her index finger is the sign for "yes" and a fist is "no".

E., her caregiver, and I are trying hard to incorporate various questions into her daily activities. So before every sip of water, for instance, we ask her whether she'd like some.

Hoping they don't ditch her any time soon.

Antibiotic = anti-epileptic?

Illustrative image

This could conceivably have been orchestrated worse - say while the Hubby was in Prague for three days last week. But even though he'd returned home the previous night, it was still pretty awfully timed.

So for several days, C., her caregiver E. and I were all sick in unison. That meant from Friday afternoon until Monday morning I was caring for a rather ill C myself. Sunday, I dashed out for my own blood/urine tests but was otherwise homebound all those days. I've been diagnosed with a UTI and am on antibiotics. 

C.'s blood and urine tests indicated the flu which blindsided me since I had her down for a definite UTI too. But when her fever rose on Friday morning, I panicked, called the doctor back and was glad he prescribed 3 days of prophylactic antibiotics.

The worst aspect of her illness was her suppressed appetite resulting in dehydration. We had one 25- hour stretch with NO urine whatsoever. I know, I know, I should have rushed her to the ER. But that's an ordeal I just couldn't confront. When she finally wet herself, she produced torrents.

E.'s illness involved a fainting spell - a symptom she says she's been prone to since childhood. Given that she spent three of her formative years living on the streets of Manila, that was a frightening fact to learn.

But a weird aspect of C.'s virus has been her reaction to the antibiotic. As I've noticed several times in the past, she stopped seizing since starting the antibiotic. Stopped! Cold turkey, for 4 days! 

Today is day 5 and she has only had one tiny one. She has already been off the stuff for two days but I imagine there's a residue in her system.

Has anybody out there ever observed this reaction to antibiotic? I've never mentioned it to any of the neurologists because it seemed so illogical and inconceivable. But could it be that antibiotics have anti-epileptic properties?

Have I discovered a magic bullet?

Nieces, nephews and one huge hare

C. joined us at her niece and nephew's new home on Tuesday. I wish we could bring her more often to family gatherings but the Hubby's aging back isn't amenable to that.

The highlight of the Tuesday's visit was C.'s tete-a-tete with the latest addition to my daughter's family - "Rabbit" (no name yet). Her hutch is stashed in the utility room and she never ventures out on her own so I had forgotten all about her. Fortunately I remembered her in time for C. to enjoy a lengthy pet therapy session. 

Here she is with what I'm certain is a look of concentration and intrigue:

Her nephew is in the background looking adorable as always. 

There were other nieces and a nephew in the room and I have no doubt their noise, laughter and action benefitted C. immeasurably.

And this news is strictly confidential: C.'s seizures increased immediately after I added the extra 50 mg of Vimpat to the morning dose one week ago. (I had increased the night-time dose 2 weeks ago). But three days later she settled back down to about three a day, with only one bout of fever and seizures. Could it be her body needed to adjust to the Vimpat change?

 

Remember, seizures have been Scientifically Proven Susceptible to superstitions. So improvements are definitely not to be circulated.

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.

No place like home

We are reveling in the pleasure of being home since Thursday evening.

It's still a godsend just not having C. supine day and night, not waiting interminably for her to open her mouth to be spoon fed, not having to beg a few drops of milk from the nurses for a cup of coffee, not fighting fatigue while driving home through torrential rain at 11:30 pm (with a cataract in one eye!) And, of course, for Hubby there's the treat of sleeping in a bed rather than a chair and for more than three hours.

Even C.'s inability to stand and walk as she previously did isn't concerning me yet. Just as she has regained her ability to raise her spoon to her mouth and feed herself, I'm hoping her other skills will follow suit.

Seizures have not been banished. They are still a daily feature and each one still whacks me in the gut. I'm just praying they remain at their current reasonable (for C., that is) number.

I'm still somewhat apoplectic over the gulf there was between the "team's" approach to C.'s drug regimen and that of the new doctor who appeared only in week three of C.'s hospitalization. Within four days, he had removed Frisium and Phenytoin - two drugs that the "team" insisted C. would go home with.

Never mind that the regimen was rendering her incapable of eating or staying awake for more than an hour at a time.

I shudder to think where C. would be if he hadn't materialized. There must be plenty of patients who never benefit from his input. He spends three weeks of each month glued to his screen, scrutinizing imaging and other data from overseas stroke patients and prescribing treatment accordingly. Salaries here just aren't enticing enough for full time employment.

Baby-steps

At last, C. is out of bed and able to be wheeled
around the ward

Well, this discharge is proving elusive.

Saturday was pretty disappointing with C. extremely sleepy, even lethargic. The IV fluids were discontinued in the afternoon to test her capacity for drinking and eating enough by mouth. It didn't look promising, as she clamped her mouth shut in response to the spoon and bottle.

Nightime brought the icing on the cake - copious vomiting immediately after a small meal I'd coaxed into her.

The junior neurologist ordered blood tests and a chest x-ray without delay although C. had no fever or cough. She didn't say why. But our next-door neighbor, a pulmonologist, later explained that it was a routine procedure to rule out aspiration of vomit. It would have been nice for the neurologist to note that.

I went home to sleep, consumed by guilt over her vomiting - which everyone intimated was my fault. (While the hubby stayed in the hospital as he's been doing every night. Yes, I know, he's a treasure.)

The following morning I awoke to a WhatsApp message from him that read like a hallucination:

"The resident for this coming week is Dr. J.K. He was here now with Dr. L. and Dr. M. in tow [two more junior neurologists who have been treating C. until now]. He agrees with everything you say. He's immediately taking her off Phenytoin as the first step in reducing the drug regimen and getting her out of the current apathy/lethargy. Next culprit in his eyes is Vimpat of which he says she's getting too much for her size."

C., now off Frisium and Phenytoin, has been progressing in baby steps. With my maternal magnifying glass, though, they appear as giant leaps.

For instance, she's begun opening her mouth for food. And when we wheeled her around the ward tonight for the second time, she lifted her head more frequently than she did last night.

And, of course, equally significant, the seizures are infrequent and mild, thank heavens. But you know the score: keep that one hush, hush.

This godsend of a neurologist departs the ward at the end of the week for overseas where he works over the next three weeks. He's promised to be a consultant for C.'s care via her regular neurologist - who was his student once upon a time. But it remains to be seen how that will pan out.

Meeting the merry-go-round

This week, at the age of 22, C. finally had her first playground ride.

Not that she hasn't been to playgrounds often. Most offered.the latest, trendiest equipment. But none of them had anything C. could use. After I mentioned disability-friendly public-space equipment last month [here "A small cannabis victory and a mysterious laugh"] and in August 2016 [here: "Still plagued by pressure sores, C. graduates"], I learned that in our hometown there's a wheelchair-accessible merry-go-round.

So this week we drove twenty minutes to the huge playground behind the city's zoo. The said merry-go-round stood alone among many other state of the art gadgets for the non-disabled. I only found it after a careful search because there's no sign anywhere to point it out.

C. isn't giving anything away, as you can see in the photo but it was truly a worthwhile outing. The ride, imported from the UK, was safe, easy to use and a real novelty for her.

Yesterday C. had her first hydro session in two weeks because the therapy pool had been closed for vacation. While I couldn't be there to watch, her caregiver took dozens of photos and it was clearly a success.

Back at home I snapped C. looking particularly beautiful:

But just to emphasize the cruel capriciousness of her epilepsy, within five minutes of that shot she was in the grip of a fierce seizure.

Piling on the therapies and the Keppra

It's been a rough three days for C. with seizures up the wazoo, some accompanied by fever, others without. Up to eight major ones a day and many small ones involving only her eyes and mouth (too many to count).

THC didn't work its magic. Nor did Advil when there was a bit of fever so I finally raised the Keppra from 750mg twice a day to 200mg twice a day. The neurologist had advised doing that a few months ago but I put it off, hoping that raising her CBD dose would suffice.

The physiotherapist from our HMO came twice last week and is due for another visit today. He does the same sort of limb-stretching that the other one, hired privately, did only minus the white coat and the almond oil massage, and he does it for 15 minutes instead of one hour. Well, these sessions are totally free so some corner-cutting is to be expected.

C.'s spasticity has become rather serious so we'll also persevere with these stretches on our own throughout the day. So far, no results, though.

At this point, we're postponing starting a new drug recommended by the gastroenterologist to reduce spasticity. You know that cardinal rule: never introduce multiple new med variables simultaneously.

And, after a nine month hiatus, C. is having her first hydrotherapy session today.

I'm hoping she'll function as well, or nearly as well as she used to: floating on her back, kicking her legs slightly, scrupulously keeping her face out of the water. But I have a hunch that won't be the case. Stay tuned for her hydro "report card".

The snapshot above, slightly obscured to protect his privacy, is of our HMO physiotherapist at work with C.

For good cheer, move on

If you were seeking a lift from extreme parenting and the demoralization it entails, well, you've come to the wrong address. This post is limited to bad cheer.

For a full week now, C has been running a low grade fever along with other disconcerting symptoms: sleepiness, unresponsiveness, unsteadiness, seizures both major and minor throughout the day.

Neither the blood tests nor her pediatrician's clinical exam revealed any alarming findings and he thinks C. could just have a virus. But he did notice two anomalies for which he's referred us to an abdominal ultrasound and x-ray:

• "Vertically-oriented abdominal mass to L of midline, partly pulsatile, probably abdominal aorta" (but he assured me it's probably so prominent because C. is so thin)
• "L-sided abdominal masses palpated, oriented vertically. Suspect stool masses" (and he assured me this is easily remedied with laxatives).

He wants us to do an abdominal ultrasound and x-ray before treatment. So, with Wednesday the earliest appointment date I could get for those tests, until then it's just wait and endure.

On the right is my sketch of what C. has looked like this past week.

My daughter thinks she's a surfboard

Stiff as a surfboard: Trying to get C. into her wheelchair today

Once again, it's a mixed bag of news regarding my daughter C.

We did fresh blood tests a week ago which showed that her liver has improved and her albumin level is within the normal range, though just barely. Also, without taking any diuretics, she is free of fluid retention anywhere in her body for the first time in years.

(Admittedly, that’s the layman’s take of the Hubby and me. The extremities are easy to assess; the abdomen, less so but we’re both pretty confident it’s all clear).

Another perk of that albumin rise is the dramatic progress in the healing of her pressure sores. I’m already allowing myself to dream of life without daily bandaging. (For those as ignorant of albumin’s significance as I was a few months ago, note: low albumin level means failure of sores to heal.)

The doctors, in particular the gastro, had been convinced that C.’s liver was seriously diseased, possibly with a chronic autoimmune illness. You’d expect them to now backtrack and blame the Valproic Acid for the liver mess – which was their original theory. But they haven't. They just concede that C. is a “complex case” and “a puzzle”. (The pediatrician did mention a viral infection as the possible culprit but didn’t elaborate.)

Presumably at our next visit to the gastro, we’ll hear some firmer hypothesis. For now, we’re just reveling in C.’s rehabilitated liver.

But, as I said, this is a mixed bag so there's been no partying to celebrate all the above. Because, despite those positive developments, C. hasn't been functioning very well. She has resumed feeding herself and we're really thrilled about that. But she has also become extremely stiff and won't bend her knees either to walk or to be seated. In the past, she has had a tendency to lock them periodically but she always loosened up eventually. These days, they are constantly rigid to the umpteenth degree. It takes two-three adults to seat her. And when I try to walk her, she just goosesteps.

Seizures have been more or less under control (around two a day) with a raised Cannabis dosage: 22 drops, 3 times a day. She’s also getting Keppra – 750 mg twice a day and Carnitine 500 mg, 3 times a day.

We continue to enjoy our daily help with caring for C. She’s a fantastic young Australian woman who just earned her BA in chemical engineering. She arrived without any experience in this field but is a quick learner, reliable and very compassionate towards C., which has enabled me to sleep more at night, dote on my grandchildren and, so far, keep that Takotsubo at bay.

Trial and error - with the emphasis on error

The gauntness and pressure sores are still plaguing C. but - ssh, don't divulge this to a soul - she's seizing less than she has in years and is only getting cannabis. The Hubby and I don't even dare to utter the above so we "nudge, nudge, wink, wink" to report our observations to one another.

The health maintenance org people finally sent us a dietitian to assess C. and her diet. She was stumped, along with everybody else. Where is all that nutritious, high calorie and protein food I so lovingly cook for her going? She said she'd consult with more senior colleagues and get back to us but so far, nothing.

This morning the visiting nurse took more blood from C. for a laundry list of tests ordered including one that C.'s pediatrician believes may shed some light on the source of her liver damage.

And this afternoon a second health fund physiotherapist came to finish the assessment begun by her colleague three months ago so that a new insert/wheelchair and bath seat can be ordered, courtesy of the health ministry.

Seizures CEASED like the rain

After 10 seizures
and 5 drops of THC

I intended to launch this post with the 2 nurses' visits on Tuesday.

But then came yesterday morning: About 10 seizures in 10 minutes leaving C. limp, coated with saliva and twitching. At that point I grabbed the THC and gave her 5 drops. That was one drop more than the highest dose she'd had about 3 weeks ago when we brought her to the neurologist for a routine checkup.

This time it had an almost immediate affect on her. It reminded me of a line from one of my favorite children's book which I often read my grandchildren, Sylvester and the Magic Pebble: "It didn't stop gradually as rains usually do. It CEASED."

Likewise, C.'s seizures weren't subsiding; they were actually growing more intense. But after the THC, they CEASED.

Some six hours later, she had about three more seizures and after 2 drops of THC, they CEASED again.

This morning, I was greeted by another barrage and after five drops of THC and two more seizures, it ended. 

The Hubby is a bit skeptical but, despite the absence of definitive proof, I'm convinced the THC earns the credit.

Next post, I'll summarize the two nurses' visits.

Yikes: The VNS rep called already!

From a Howcast video

This VNS business is galloping ahead at break neck speed.

I'm used to medical matters that take ages to be resolved. Like my left-eye's cataract which has been rendering my vision progressively more blurry for three years. I am only now about to have surgery on it. (And that hysterectomy I was told I need which I've put on hold for now.)

In contrast, not even one week after our visit to the neurologist, the rep/nurse called to set up an appointment here at home. I am not psyched up for C. having another surgery just yet and feel that the powers-that-be are disconcertingly eager to implant the thing in her.

But as the Hubby reminded me, we've only committed to a chat; no knives or anesthetics or hospital stays involved at this stage. Still, I have a hunch that we'll be offered a date for all that which will leave us little time to  ponder this move thoroughly.

I suppose my reluctance to race ahead with this is also related to blessed calm C. has been enjoying since those four awful days last week.

Well, in any case, the meeting is set for Tuesday and I'll keep everybody posted.

An update on C.

The near-daily fevers haven't abated.

I obtained a pediatrician's note assuring the school that the fevers are not symptomatic of anything contagious and authorizing the school nurse to administer Advil when needed. I also provided the nurse with a large supply of Advil capsules.

I still wonder whether the Rivotril weaning is triggering these fevers.  But at only 4 drops three times a day we're down to less than half of C.'s original dose. I can hardly wait to see what she'll be like once her body is free of this drug.

And now for some irony

Mexico introduced the United States to marijuana. The practice of smoking it appeared in Texas border towns around 1900. It was brought by Mexican immigrants who cultivated cannabis as an intoxicant and for medicinal purposes as they had done at home.

Within 15 years or so, it was plentiful along the Texas border and was advertised openly at grocery markets and drugstores, some of which shipped small packets by mail to customers in other states. The law enforcement view of marijuana was indelibly shaped by the fact that it was initially connected to brown people from Mexico and subsequently with black and poor communities in this country. Police in Texas border towns demonized the plant in racial terms as the drug of “immoral” populations who were promptly labeled “fiends.” [New York Times, July 2014]

But today Mexico bans its use more strictly than the United States does (some background on that in an August 2014 post of mine here). The parents of Graciella Elizalde, 8, who suffers from Lennox Gastaut (that's C.'s epilepsy diagnosis too - the only diagnosis we have ever gotten), were denied access to the drug by Mexico's secretary of health who argued:

"that there was no conclusive evidence that cannabidiol was safe or effective in treating epilepsy." 

Graciella in the Washington Post: She's having a seizure.
My daughter C. looks almost identical when she seizes.

After a protracted fight to obtain the drug, those parents finally won a  special federal judge's order overruling the government's decision.

As reported in the Washington Post:

"With the exception of more liberal Mexico City, public opinion in this socially conservative country falls strongly against legalization. Tens of thousands of Mexicans have died in the country’s war with its drug-trafficking gangs, a toll that hasn’t weakened the government’s policy."

Since it is still illegal to transport cannabis from one state to another and across most foreign borders, the Elizaldres still face hurdles. It remains to be seen whether the Mexican government will appeal in order to enable the importation (as Brazil has already done).

If so, Grace would be the first person to legally use marijuana in Mexico - and might enjoy some relief from her hourly seizures.