Monday, February 18, 2019

C. gets ditched

Last week's hydro and C. is with the replacement therapist
As anyone who has visited here knows, hydrotherapy is unequivocally the highlight of my daughter's life. We go to great lengths and expense in order for her to get it once a week. I've posted numerous photos and videos of her hydro performances. And we adored her therapist.

So I was blindsided this week when that therapist told me she could no longer work with C. and would be swapping with another therapist. Now, while she is the only other one whom I consider acceptable, she can't compare to her current one.

And here's the reason: She 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. I can only comprehend her situation by equating it with my driving. Once upon a time, I was fairly confident 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 take our grandchildren for rides of ten minutes maximum and only on routes I'm very familiar with.

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 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 activites. 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.

Tuesday, January 22, 2019

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?

Sunday, January 13, 2019

Two switches: To a wetsuit and to a drier diaper

After a three week closure for repairs, the local therapy pool finally reopened. 

During its closure, I took C. to the neighborhood regular pool where I do my laps. It's only heated to around 27 degrees Celsius (about 81 Fahrenheit) versus the therapy pool's 33 degrees (91.4 F). 

While she floated passably well in it, she didn't kick and was clearly cold. Can you see the difference between her demeanor in the two pools in these photos? If it isn't apparent trust me, she was shivering.

In the cold water
In the warm water
A friend who was in the pool with his baby during one of those sessions suggested buying C. a wetsuit. Diving isn't our thing so we promptly boned up on them and ordered one from Amazon which equally promptly sent it.

Here is C. trying it on. 

Stay tuned for a report of her maiden swim in it.

Another major switch we've made is of C.'s diapers. I have been resistant to using adult diapers, clinging to the largest size of Huggies. I'd use two at a time for greater absorption but her pants were always getting drenched nonetheless. I can't really explain my reluctance to switch other than because the smallest of the adult ones are still too large and bulky for C. 

Well, one of my daughters took the bull by the horns and brought us a couple of packages of adult diapers. E., C.'s caregiver, was immediately smitten with them and I came around eventually too. 

Her pants do get drenched occasionally but not always as before. Also, because of the improved absorption, those spots that were prone to pressure sores are totally healed. 

Win win.

Friday, January 11, 2019

My plunge into activism

Somehow I have less and less time these days. Admittedly, since my heart attack two years ago, I've stopped skimping on sleep. But I doubt that explains my inability to do nearly as much as before.

In any case, one result has been neglect of this blog. 

I suppose that the "same old, same old" status of C. has also contributed to my failure to post (seizures are still a fixture of our lives, fine and gross motor skills - plateaued and that new wheelchair is still a nightmare.)

An additional factor is my recent involvement in some honest-to-goodness activism. It fell into my lap, out of left field. 

Here's how:

A major local organization defending the rights of people with disabilities recently paired up fifteen members of the legislature with fifteen involved citizens, me among them. We were sent - all on the same day - to stage surprise raids on twelve large, closed institutions scattered across the country. 

The idea was that the law-makers, who by law must be admitted whenever they appear at an institution's door, would insist on being accompanied by their activist-partners. Of course, on our own we would never have gained entrance.

My lawmaker-partner and I visited an institution that's just fifteen minutes drive from my home. It houses 82 people with severe disabilities ranging in age from infancy to 40 years old. I've been harshly criticizing this place in posts here and at other sites for a long time so it was thrilling to finally gain entrance to it.

A complaint letter has been sent to the relevant government ministry containing some of what I learned from the tour guide - an employee of the raided institution.

I've spent tons of time transcribing the recording I made of our tour guide's hour-long spiel. She's an administrator of the place and just spewed the jargon-laden gobbledy-gook for over an hour.

This week, a complaint letter drafted by the advocacy organization and containing some of what I learned from the tour guide, was sent to the government department that's in charge of social welfare. 

I'll share some of the damning points in another post, after the department responds.

Saturday, November 24, 2018

On institutions and getting your life back

From the New York Times article quoted below
How nice. We have our own month.

This year’s theme for National Family Caregivers Month, November 2018, is “Supercharge Your Caregiving”.

Now that's so vague, it begs an interpretation. This is mine:
Galvanize and supercharge the public. Enlist them as supporters of home care.
So here goes.

To those living in countries like mine, where the institutionalization of people with disabilities remains a flourishing business: You may be among those swayed by the propaganda disseminated by our local institutions. You may now be convinced that they are indispensable; that people with disabilities could not survive – or would suffer - without them.

And I don't blame you. You are in good company. Most of our fellow citizens have succumbed to the contention that the residents of our large, closed institutions have nowhere else to go; that many have been abandoned by their parents and that some are sent there by court order.

But I have learned that the above is a far cry from the truth.

I called a hotline recently opened by the largest chain of large institutions in my country. I posed as a parent who is considering institutionalizing her daughter with disabilities, urged on by her husband but very reluctant to take the step.

The staff member who answered my call immediately assuaged my concerns about the negative effects of institutionalization which I told her I’d read about.

She reassured me that I would “remain my daughter’s parent” since I would be free to visit her whenever I choose to. To reinforce that, she mentioned one mother who stops by her child’s institution every night to tuck her into bed.
I had described my daughter as “severely disabled”. But at no point in the conversation did the staff member inquire about the extent or type of disability my daughter has. She asked me whether I had tried out some sort of day program. When I replied that we couldn’t find a suitable one, she left it at that, with no questions about why we rejected them all.

She conceded that handing my daughter over would be “a difficult process” but that ultimately it would be worth it. Once it is done, she promised, “you will get your life back”. To conclude, she urged me to meet with the institution’s social worker who would be able to give me further details.

Sometimes this chain of institutions resorts to outright hard-sell. A video proudly publicized on its website features the hyperbolic praise of several parents who institutionalized their children. One father relates that within days of his wife’s passing, he was phoned directly by the CEO of that enterprise and urged to hand over his child. He is grateful for that interference.

In this country the belief that that large, isolated institutions is the ideal option, is embraced as gospel. Even disability advocates don't challenge it unless the blatant abuse of residents has been exposed.

And as we all know, reports of abuse are rare. Staff members are loathe to turn whistleblower for fear they’ll lose their jobs. Parents rarely learn of abuse from their children who are often incapable of reporting it. Even when they do, many are afraid to speak out lest their abused children incur revenge abuse from the staff.

So, as I said, if you have succumbed to all the pro-institutionalization PR, that is understandable and you are not alone. But rest assured, it's an entirely different story in the wider enlightened world.

This recent NY Times opinion piece ("The Lasting Pain of Children Sent to Orphanages, Rather Than Families") highlights that enormous gap.
“Millions of people volunteer abroad every year — students, taking-a-break students, church members. Often they go to provide care and affection to children in orphanages. But such volunteers might be doing more harm than good. Rich countries closed their orphanages long ago. Decades of research [link] shows that institutions — even the best — harm children, who simply do better in every way in a family. Within one, they can get consistent adult attention and engagement. But orphanages are expanding in poor countries."
Why is our country treating its children with disabilities as if it were a poor country when the truth is quite the reverse? Why does our government gives tens of millions of dollars annually to just one chain of institutions?

That cash could instead enable families to care for their children with disabilities at home with greater ease and peace of mind. It could finance therapies and caregivers to "give parents back their lives". And it could achieve that more cost effectively than through institutionalization.

Many well-intentioned people help sustain institutions by volunteering in them. That support, dubbed "voluntourism". is actively solicited by institutions here and in poorer countries. Ours, repeatedly posts profiles of overseas volunteers who have who have worked there. Over a dozen such volunteer "testimonies" as they are dubbed, currently appear on one website.

That NYTimes piece about volunteers has more harsh words for volunteers :
“Volunteers from rich countries make children’s lives worse in two ways. One, paradoxically, is by hugging them. By definition, every child in an orphanage has been abandoned. Their attachment issues get worse with each volunteer who showers them with love for a week or two — and then flies away. Volunteers are also perpetuating a system that takes children from their families…What drives the growth in orphanages isn’t motherless children. It’s donors and volunteers from countries that don’t use.”
So make your voice against institutionalization heard. Support parents who want to care for their children with disabilities at home but who find that the system abandons them. With subsidized caregivers and therapies, many who institutionalize our children would keep them at home – and still “get their lives back”.

Let's follow the lead of other enlightened countries. Could they all be wrong?

Wednesday, November 21, 2018

Regression strikes - then recedes

There are several reasons for my silence, a major one being C.'s disappointing performances in both walking and swimming. It's painful to describe such depressing developments while in the grip of them.

Asleep in the hydrotherapy pool
Then as suddenly and inexplicably as her walking regressed, it returned to normal - well, normal for C., that is. She resumed straightening her left leg in between steps and independently step
ping with her right leg. (Stepping with her left one is still a rarity so I push it forward).

The swimming regression was even more alarming. 

In two consecutive hydrotherapy sessions, she fell asleep the minute she entered the pool. It was such a deep sleep that no amount of interference from the therapist, E., her caregiver or me could rouse her. 

We nudged her, spoke to her, tried to give her drinks, poured cool water all over her face and neck, all to no avail. The first time I panicked and was on the verge of racing her to the ER.

That first episode passed abruptly five minutes before the end of her session. She even floated nicely until leaving the water. The following week, though, she didn't wake up until she was in the shower.

The temperature in and around the pool was higher than usual because the room's heating wasn't functioning properly. But that didn't explain the previous week's fiasco when the room temperature was normal. Nor the fact that nobody else fell asleep there either week. 

Has anybody ever had this bizarre reaction to a therapy pool?
C getting OT at home

I had resigned myself to the possibility that C.'s hydro days were over and resolved to try just one more session today before cancelling her upcoming ones.

Well, lo and behold, will miracles never cease, Hallelujah and all the rest - C. decided to float and kick today! More impressively than ever.

The icing on the cake was a productive OT session yesterday. (We've had a couple of wasted ones thanks to seizures or post seizure exhaustion). 

So this time our young, bright therapist watched C. feed herself for the first time. And she threw out this creative idea: instead of our holding her wrist in between spoonfuls as we do, she advised us to just fill the spoon avoiding any contact with C.'s hand. 

If she doesn't, then put the spoon in her mouth independently; we are to gently tap the back of her hand. The goal is to progress to a mere verbal reminder. She stressed how important it is to help C. maintain this skill. 

Of course, I didn't need that reminder. Each of C.'s tiny skills C. is priceless.

Sunday, October 14, 2018

On vomit and the vicissitudes of hospitalization

Sunday, October 7

I'd hoped we could keep these hospitalizations down to annual events but didn't manage that. 

C. suddenly began vomiting copiously yesterday. We tried caring for her at home. On her pediatrician's advice, we tried Pramin suppositories. He said that with no fever or diarrhea, she wouldn't dehydrate overnight. 

But the med had no effect. The gushes of liquid vomit kept coming at two-hour intervals. Horrific doesn't come close to decribing that night. By morning, there were strands of brown blood in the vomit so the question of what to do was a no brainer.

So here we are back in the ER, 11 months after C.'s last hospitalization. 

So far, she's weathered a chest X-ray and a 12-hour struggle to get urine via a catheter. (An incredibly incompetent nurse couldn't get any urine even though C.'s on a fluid drip. Nurse on the next shift collected it with ease.) Temporary predictable diagnosis: another UTI.

Now I'm at a loss as to how to prevent them. We had to stop giving cranberry juice several weeks ago because it seemed to cause vomiting. Should we now resume that, perhaps in a more diluted form?

Tuesday, October 9

Here we are, finally, in a proper ward (where we waited several hours in the corridor for a room).
No cubicles available, so we're in the corridor

The doctors have done a diagnosis 180°: UTI is now ruled out, replaced with "some infection, somewhere", possibly gastroenteritis. That may have led to aspiration of vomit and may also have caused the intestinal bleeding we saw in her vomit. 

She's still getting IV Controloc (pantoprazole) to prevent a repeat of that bleeding although there's no sign of it anymore, not even in her stools.

Bumped into the neurologist who we believed had dumped us when she ignored our last email around six weeks ago. Turns out she never saw it and is happy to re-enter C.'s life. She promptly ordered a CT and EEG; assured us she'll contact that terrific American neurologist whom we can't consult directly because he doesn't have a practice.

She also decided to search for info re central fevers and told us she learned it's not uncommon among uncontrolled epileptics!

C. is off the IV drip and has begun to eat and drink. She's back on her Vimpat which was only available in pill form. (They had Keppra in IV form is so she's been getting that regularly). But I haven't resumed the cannabis yet.

We've missed hydrotherapy - the highlight of C.'s existence - which takes place on Tuesdays. We may also miss the long-awaited delivery of C.'s new wheelchair scheduled for Thursday.

Wednesday morning, October 10

Back on the drip because after a batch of heavy seizures, C. was unable to eat and could drink only a bit. A CT was done this morning. Not clear why it was ordered but haven't heard any results yet in any case. UTI has been ruled out even more emphatically today. It's not looking as though we'll have C. home in time for the wheelchair delivery tomorrow.

And here are a couple of gems from the medicos:

Nurse about to finish her shift comes around with next shift's nurse. I hear her mention that she had taken C.'s temperature which was slightly elevated but that she decided against Tylenol. I told both nurses that C. is seizing badly and could actually benefit from Tylenol for her fever. Then the nurse about to leave delivers her pearls of wisdom: "You see, she's seizing badly because her epilepsy isn't controlled. It needs to be brought under control. She needs to see a neurologist." To me: "You should consult a neurologist." 

I regret that I didn't ask her: "Why? Do you think she might have epilepsy.?"

Wednesday night, October 10

I witnessed an argument between two doctors at the station which was situated immediately outside our cubicle. I had the curtain open so couldn't avoid hearing one, a male, tell the other, a female: "You're a hussy". The other responded: "Well tell me, do you know the patient's background?" "You ought to tell me it", snarled the guy back at her. "No, you're supposed to know it, " she repeated "Why don't you just do your job?" The guy shot back adding once again, "You're a smartass." 

Help, many lives are in the hands of these nincompoops!
First seating

That same male doctor had earlier declared when the Hubby approached him: "Whatever you're about to say I'm not interested unless it's urgent. I only deal with urgent matters."

Thursday, October 11

C. will be released today. CT negated anything alarming and the EEG showed no change since the last one. 

While she isn't eating or drinking much, I nixed the nurse's suggestion of a feeding tube. On Tuesday, a speech pathologist assessed her swallowing skills and they passed muster. So I figured it was best to just persevere with feeding by mouth. The less intervention, the better.

Thursday night

Home! And, the icing on the cake is the new wheelchair is here too! Here is C. over on the right. Sitting in it for the first time:

Friday, October 5, 2018

Back to hydro - and doctor problems

C. finally scored one hydro session during the month of her therapy pool's closure. I had hesitated to give her one because the water in the available pool - it's the one I swim in - is much colder than C.'s therapy pool. But our past experiences there, about a year ago, usually proved worthwhile nonetheless. 

So with E. and the Hubby we gave it a shot on Sunday. 

The first ten minutes she was tense, limbs bent and unable to float on her own. I was tempted to admit defeat. But eventually she floated independently, kicking slightly - admittedly shivering - but thrilling us all nonetheless for around twenty minutes. 

On the seizure front, we're still seeing somewhat of an improvement with the raised Vimpat dose though not the sort that halts the hunt for better control. 

But for now we're occupied with trying to get a neurologist to submit the paperwork required by our health fund for renewal of our Vimpat authorization. It expires on November 24th and the paperwork involves a neurologist filling in forms along with numerous other signatures, a time consuming process. 

The problem is we're getting the email silent treatment from the two neurologists who have most recently treated C. One is the doctor who recommended adding on Frisium while also recommending that we see an epileptologist since epilepsy isn't her area of expertise (she's a headache specialist!) We notified her that we'd heeded her advice re an epileptologist but not the Frisium tip. We were pleading with her to contact a senior neurologist who had helped us immeasurably in the hospital last year. 

No response from her. Apparently she had her heart set on C. getting Frisium - which would have brought her ant-epileptic tally three! (Excluding cannabis.)

The second neurologist ignoring us is the epileptologist we first saw last month - and paid out-of-pocket for the privilege. She is the one who urged us to raise the Vimpat dosage. And now she won't help is out with the Vimpat authorization paperwork!

Is there something in the water these neurologists drink that makes them so heartless?

Friday, September 28, 2018

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.

Sunday, September 23, 2018

I wanna hold your hand

I haven't written about C.'s occupational therapy sessions which have been ongoing for two months. 

A few weeks ago we had one fiasco with C. in the throes of a string of seizures when the therapist arrived. (I had called to notify her but she was already on her way). 

Since then, though, we've had a few productive ones. 

Here is C. (above) getting her ligaments gently stretched at the session's start to maximize her range of movement:

And here below she is working on gripping an object while therapist, N., shakes her hand. 

She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it.

Modest goals, but enthusiastic responses from all three of us - the therapist, C.'s caregiver, E. and me. You've got to admit, we're a realistic bunch.

We had about two weeks of relative relief from seizures (i.e. only about three a day) which I attributed to the rise in the nighttime Vimpat dose. 

But here we are, after raising the morning dose too and the seizures are back with a vengeance. 

We still haven't managed to check the Keppra blood levels so maybe therein lies a solution. The HMO nurse tells us that test will only be available in about a week. 

No hydro photos because the therapy pool is also closed for a few weeks. 

Excitedly awaiting delivery of the new wheelchair on October 8.