To hospital, to hospital... Home again, home again (but no jig)

Home-prepared food for Haya 

 

To market, to market, to buy a fat hen. Home again, home again, jiggety-jig...

Wikipedia

Start with this background: "Haya's update: It's a downer" [February 18, 2021]

I wrote the following this past Sunday night:

At this point, even rectal Diazepam is stumped. It used to knock Haya out for hours. Even an old 2018 dose had that effect a few months ago. Today, the seizures have broken through after an hour. I fear we are approaching the last option - the ER. It's a nightmare we make every effort to avoid. But these seizures are destroying her.

And wrote this on Monday:

Well, we finally succumbed and decided to bring her to the ER. At that point, Murphy's Law kicked in and seizures stopped. She hasn't had one since we placed her in the stroller at home for the trip to the hospital.

And then this on Wednesday:

Needless to say, Haya resumed her Status Epilepticus once we were in the hospital and several med strategies were employed:
Vimpat was resumed, starting with an IV surge of it, followed on Tuesday morning by a return to oral.
She was also given a low IV dose of Valium together with the Vimpat.

Today, the IV meds were stopped. We also learned that blood and urine tests and a chest x-ray eliminated the potential diagnosis of infection.

In addition, the neurologist has recommended adding on the modified Ketogenic Diet from tomorrow. The dietician called me to discuss Haya's food sensitivities (tomatoes) and has dispatched me to locate and purchase flax seed bread, She says it's manufactured by only one company in these parts. With our lockdown over since Sunday, local streets have been jam-packed throughout the day and I don't relish driving around in that traffic, from shop to shop hunting for that bread. And that's not all: If/when I do locate it, the dietician has instructed me to crush it in a blender which she advised me to bring to the hospital! Well, I made it clear that wasn't happening. 

(Gently) If I don't sound enthusiastic about the diet it probably stems from the fact that we tried it when Haya was around three years old and didn't achieve seizure control.

For what it's worth Haya was mostly calm tonight, ate with relish, and lifted her head off the pillow repeatedly. Here she is pointing her index finger to sign "Yes. I'd like to eat" and then opening her mouth even before the spoon reaches her." [Video clip to come]

I'm writing this on Friday and Haya returned home two hours ago.

I will (frantically) attempt to prepare her Keto meals for the first time. I just realized that the toothpaste we use may not be Keto-friendly. So I sent off the ingredients to the dietician for her verdict. My daughter, a pediatric dentist, just told me about a patient on the diet who needed several teeth extracted because his parents brushed his teeth without any toothpaste!

And now it's Saturday night:

The dietician nixed the toothpaste we use for Haya and offered an alternative brand which my daughter, in turn nixed because it's not only sugar-free but fluoride-free too, adding "It's as effective as brushing with water."

That concern is relegated to the the back burner. For now we are focusing on:

• Preparing and weighing meals
• Getting them into Haya without any dripping/spitting out.
• Counting the seizures.

So definitely no jiggetty-jigging yet.

PS The hospital water fountains were all covered up with plastic wrapping.

PSS Every so often when walking in the corridors, shouting staff would alert us "Stand back! Wait where you are! A Corona patient is being wheeled by!"\

Status report: Status epilecticus

I don't normally write in midst of a horrific period for Haya. 

But while I type this, she is in nearing 48 hours of what would undoubtedly be deemed by a hospital team as Status Epilepticus. Basically, that's the epileptic's nightmare - non-stop seizing - and I figured I ought to record it. 

Until this struck us, she had been doing extremely well and was down to only 3-4 seizures a day. I was growing ridiculously optimistic about her new med, Fycompa, already dreaming about her possible future milestones. 

Tomorrow night, her Fycompa dose rises from 4 mg a day to 8, as her neurologist instructed us. That's the therapeutic dose we've been aiming for these past six weeks.

But now I don't have the same high hopes I had for it's success as I did two days ago. And in any case, it will be some time before the higher dose kicks in.

Haya right after a seizure today

UPDATE December 25, 2020 - Friday afternoon 2:30 pm: Her seizures have worsened so we have one foot out the door in the direction of the ER. The memories of our last stay there are still so vivid and horrible. And I know the experience will only be worse now in the midst of our huge Covid wave. 

So before resigning ourselves to the ER, I  am making last-ditch efforts to get her under control at home with paracetamol, Advil and raising her Vimpat back to 100 mg. Insider tip: Avoid those paracetamol suppositories even when swallowing is problematic. They can escape from the rectum quite a while after administering. There's no way of knowing how much was lost so you can't re-administer. It just happened here!

As a last resort, I have prepared our Diazepam rectal tubes that have an expiry date of 2018. I've read the instructions carefully and studied the diagrams. We can't find any new stock in any of the pharmacies here. Haya's pediatrician believes they're probably still potent as drug expiry dates tend to be exaggerated. 

I also called her neurologist who had succinct advice: "Get her to the ER." 

In three days we've gone from counting the number of seizures/day to the number of minutes between seizures! 

Will update - hopefully from home. Meanwhile here is Haya, whacked by her ordeal.

My daughter's rough week and some thoughts from ALEH and UNICEF

Me walking Haya last night. That little
tongue sticking out is how she shows
she's feeling happy

It has been a trying week, Haya-wise.

It began on Shabbat with your garden-variety vomiting - distressing enough. That then progressed to vomiting containing dark brown liquid (i.e. raising suspicions of blood). For a while, she couldn't even hold down water. 

We seriously considered rushing to the ER as we have done in the past with such symptoms. But the thought of hours waiting in a crowded public hospital ER with Covid raging around us scared us off that option. So we grit our teeth - and for my part also cried. And kept on doing so until the symptoms improved somewhat. 

Haya's wonderful pediatrician was assuring throughout this period (and since her stools were blood-free, he eliminated a few concerning diagnoses).

Finally the vomiting grew less frequent, her fever at no point spiked and she continued to provide wet nappies. (She had around 38 degrees Celsius rectally every time I checked. Since she always tends to get neurological fevers of that level, it wasn't a helpful symptom).

We tried all week to get a Health Fund nurse to take her blood at home. We had provided the necessary documents and repeatedly stressed the word "urgent'. But to no avail. Various bureaucratic snafus prevented that from happening. 

Today [Wednesday] finally, we've been promised a home blood test tomorrow morning. Fingers crossed.

Friday Update -
The Nurse came! Blood test results were, thank G-d, fine.

Now, switch to a child like Haya, in this condition, living in an institution. 

I'm not sure she would have survived these days. My husband and I and Haya's daytime caregiver, Elvie, all worked hard to keep her hydrated, monitor her vitals and when she was capable, to stand and walk her. 

Which institution here would have been equipped to provide that care? Especially in this Covid era? Large, closed institutions are all short-staffed.

Even Aleh, Israel's foremost provider of institutionalization to children with disabilities, has announced the suspension of all volunteering in at least one of its facilities. Its Jerusalem branch is now advertising posts in absolutely every relevant field of employment.

They need caregivers, social workers, activity coordinators, pharmacist, storeroom workers, aides. Good work conditions for appropriate applicants. Located near the Central Bus Station.

Who is caring for their highly vulnerable residents while those posts await filling and when volunteers - the most inferior type of care at the best of times - are gone?

I shudder to imagine.

Here is some wise advice from UNICEF to countries like ours that lag behind the rest of the developed world of which Israel professes to be a member:

Transforming mental health care and institutions is no easy task, especially with the world’s resources fully stretched in response to the COVID-19 crisis. But this pandemic is not just a health emergency; it's also an opportunity to develop a system of support services that work better for people with disabilities and respect their rights. Now that we’ve caught a glimpse of what it’s like to be locked up, we surely can’t let people with disabilities continue to live in a permanent state of lockdown. [Source]

Let me end with some words from the Aleh people themselves. I actually never imagined that Israel's champions of institutions would publicize a quote like this one below. I believe it speaks for itself. 

This year, due to the restrictions which the Corona virus has brought, the [birthday] celebrations [at ALEH] were much more modest. Elyashiv's parents arrived at the Village to visit him but didn't bring him home as they normally do. "It's sad but happy. I see that Elyashiv misses us. He understands that we have come just to visit and so he is a little sad. But I know that we made the right choice. I know that it's good for him, that the staff at the Village want to do the best for him. The sensitivity, the professionalism, the caring and their responsibility towards him deserve appreciation," relates Elyashiv's mother. [Source: ALEH "חגיגות יום הולדת בצל הקורונה" in Hebrew, translated by me]

Had I written that promotional piece, I would have added: "But would this be the "right choice" for a child who doesn't have disabilities?"

Human beings and Haaretz

The Mahane Yehuda shuk in Jerusalem [Image Source]

I found the following Hebrew article from last weekend's Haaretz very moving. So I translated it (without anyone's permission) to share with my English-language readers. Apparently I wasn't alone in my appreciation because it generated 313 comments (so far) on Haaretz' website, most of them adulatory. 

I've translated a sampling of them which appear below after the article.

It's a Human Being, You Must Help
Alon Idan - published in Haaretz Magazine, June 26, 2020

(The title on the Haaretz website translates to "A Large Man Falls in the Middle of Mahane Yehuda. Here's What Happened Next")

Translated by Frimet Roth

The man simply fell. 

Actually"fell" isn't accurate. Everybody falls. He didn't simply fall. He collapsed. He exploded. He was sprawled on the ground like a sack thrown from a truck. It was horrible. Truly horrible. Everybody stood nearby. 

It happened next to "The Best Falafel in the Land" stall. Every city has a "Best Falafel in the Land". It happened beside "The Falafel of the Levi Brothers" in the Mahane Yehuda shuk which is the best in the-land-called-Jerusalem and he was a large man, tall, broad, impressive, mustachioed, dressed in light brown pants, a light brown buttoned shirt, shiny black shoes and he wore what looked like a luxury watch and in both his hands he held white bags with the shopping he had done at the shuk, and in one bag were all sorts of items that were hard to discern while in the second bag was a large tray of eggs, the old fashioned kind with, I believe, 30 eggs or maybe even 36, in any case it doesn't matter anymore because all the eggs were now broken and had become one huge yellow batter.

And what happened is that there were many metal blue barriers, the sort the police set up in order to close off streets when there's a demo, only this time they closed the entrances to the shuk so it would be possible to measure people's temperature. But there were several barriers that they hadn't used and these were placed on the road, one next to the other, with the edge of one of them, the last in the row, simply protruding toward the sidewalk such that, if by chance a large, broad, impressive, mustachioed man holding two white bags and rushing home, didn't notice it, he was likely to encounter it, slip, fly in the air and then when he would attempt to place his other foot on the sidewalk in order to block his expected fall, he'd discover that there isn't a sidewalk, just a road on which he is now spread out, in pain, shocked, with blood covering the upper part of his face.

And this is what happened afterwards: 

Everyone who was near this large man lying on the ground came over to help. People left their shopping, their bags, their plans - and helped raise him. And afterwards they sat him on a red chair near The-Best-Falafel-in-the-Land. Then they gave him a drink, and then a fellow from the neighboring stall, a too-thin person with a white undershirt, arrived with a litre and a half bottle of water and offered to rinse the large man's flow of blood that leaked from the upper part of his nose. The large man felt uncomfortable and said "It's OK, it's OK, I'm OK". But the thin man with the white shirt told him it was not OK and that he should stop arguing and allow him to rinse the blood. And he stood beside him and rinsed off his blood. 

And in the meantime a rather elderly woman who had two minutes earlier helped the large man stand up from the road whispered something in her daughter's ear. The daughter heard the words and left the place. When the large man looked like somebody who was considering standing up and trying to walk, the woman approached him and said: "What are you doing? Sit, you aren't moving from here, you got a strong knock, rest". And she stood beside him to make sure that that would actually happen.

Simultaneously, another man arrived, with grey hair and glasses, took the large man's hand and asked whether he was alright, and whether he needed anything and how to help. The large man said with a stammer diluted with embarrassment, "I'm OK. Everything's OK." Another man, with a stubble and slicked-back black hair, meandered nervously near the blue barriers and tried to understand what had happened. He too works in the shuk and now he kicks the rebellious barrier that caused the fall as one avenging the large man, and mutters "Look at this, because of this Corona look what's happened to a person. It's not alright."

He was so angry that the only way for him to be rid of the anger was to approach the large man and console him: " It's OK, everything will be OK."

After around ten minutes, when the large man again tried to stand, the too-thin man with the white undershirt simply wouldn't let him. "You might have a concussion, you musn't stand, sit, there's no reason for you to hurry, we'll bring you what you want," he said.

The large man nodded embarrassedly, he knew the too-thin man was right. The other people also remained in their places, waiting, watching with concern, from the corners of their eyes, the large man who sat on the chair.

He finally rose. His left leg was in great pain. He limped. People supported him. They said maybe he should rest a bit more. but this time he insisted on walking. "I'm fine", he said, " Believe me, I'm fine." He wasn't fine. You could see he was in pain. And that woman who had whispered something in her daughter's ear stopped him. "Wait just a moment," she pleaded "just a moment." He didn't understand why but he waited. After several seconds, she said "Here, she's coming." And her daughter indeed came. With a white bag and in it was a new, large tray of eggs. 30 eggs. Maybe 36.

The man didn't want to take them - "There's no need, really no need" - but he had no choice. "Take, take," the woman told him, "It's yours, take." So he took. And then he hobbled in the direction of the street. A large man, dark, mustachioed, with a large, Muslim skullcap on his head. And when somebody approached the woman and told her "Bravo to you, really. Bravo to you," she replied: "What's this Bravo? Bravo for what? It's a human being, you have to help".

END

This story elicited 313 comments!

Here's a sampling:

• Nice to read something a bit positive. A bit of respite from the columns and articles that arouse endless despair
• Thanks for the lovely and touching column. This is the beauty of humanity in the most direct, simple and pure form. I always had the sense that people in Israel are good as individuals and something is lost when we expand the picture and reach politics and other systems on whose bases we live.It's really a good and important question for sociologists of Israeli society. In addition I'd be happy to translate this piece into Chinese, there, in similar situations people flee and don't reach out because of the (real) fear that the person requesting help is pretending and liable to ultimately harm you.
• Excellent writing. Reminds me of Etgar Karet.

And beyond the moving story, written in a really excellent manner, this from a nurse in the pediatric hematology unit at Hadassah hospital:

Thanks Alon. I work in a place where Jews and Arabs lift one another up every day. An hour ago, a photo was posted on our department's Whatsapp of R., a girl from Gaza, blind from a cancer called Retinoblastoma. The NGO "Salimatcom" organized a trip to the zoo for her the "see" the animals. The photo also shows R.'s mother, Sh. who is very attached to her, H., who just got married a week ago and I. The latter are all "Kosher Jews" who work in our department. They went voluntarily. This morning one of our doctors, also a "Kosher Jew", (she's even with a head covering) wrote an email in which she described the efforts of the staff to send one needy family from East Jerusalem, from your united capital, for a special treatment in New Jersey. [Working together are] an Israeli NGO, the patient's health fund, and the social worker who is ours (also with a head covering but not a kosher one - a hijab) and the coordinator of our department - all united in a race against time, against faxes, American regulations and against bureaucracy - in order to fly them there. It's strange to me that compassion is mostly revealed when a child has cancer or a man is bleeding in the shuk and his tray of eggs has broken. One of our staff members once suggested that Palestinian and Israeli politicians should be obligated to volunteer with us for a week, say every six months. All the best.

Aleh and food for thought

Meshi's parents interviewed in the KAN report detailed below

Just focus on the food. That’s always a safe strategy.

It's no surprise that promos for Aleh's upcoming fundraiser are heavy on the menu and light on the issues:

"Chef Ilan Garussi, chef and owner of Satya Restaurant, and Janina Bar Hama, owner of the Olmaya Hall, already began their preparations for ALEH’s Magical Gala Dinner by visiting ALEH Jerusalem to become acquainted with ALEH residents and gain some firsthand knowledge of ALEH’s amazing educational and rehabilitation activity." [From the Aleh website this week]

It's safe to presume that donors attending the Magical Gala, as Aleh calls its event, will not be exposed to any of the negatives of Aleh's institutions.

They won't, for instance, hear Naama Lerner, director of Bizchut, Israel's leading and longest running organization devoted to promoting the rights of people with disabilities. She appears on this KAN [Israel TV Channel 11] clip about the recent deaths in Israel of two young people with disabilities who resided in large, closed facilities similar to those operated by Aleh.

The journalist notes that Lerner wasn't surprised by the most recent death, that of Meshi Peretz, a resident of the Neve Ram residential institution for people with disabilities, on December 16, 2019.

Lerner (my translation from the original Hebrew) says:

"Death is the really, most extreme case. There are many, many, many problems faced by people in institutions. Let's start with the "soft" items. The "soft" items are that a person is deprived entirely of his privacy. He doesn't determine who will sleep with him in his room. He will never have a private room. People who are 20, 30, 40 years old who need a private room, personal closet, personal clothing, a moment to be alone. What do the institutions do to prevent this? They shackle them to beds, isolate them in rooms, tie them to restraint chairs, place splints on their arms so they can't move their arms. All these things are also prohibited by law."

Aleh's guests will also most certainly not have their tasty meal marred by the account of Meshi's mother of the many drugs that were administered to her daughter by that institution. Mrs. Peretz explained that she felt compelled to authorize them because if she refused and something disastrous happened to her child, wouldn't she then be blamed? How could she counter the institution's assertion that the medications were necessary?

Meshi had moved to Neve Ram two and a half years earlier. Six months into her stay, a series of hospitalizations began for bone fractures and seizures though, as her mother notes

"Our daughter was not epileptic and until she moved there we didn't know what a hospital was.”

They will probably not hear from Professor Avinoam Reches, a senior neurologist at Hadassah Medical Center and a former Chairman of the Ethics Committee of the Israel Medical Association. He explains in the KAN report (again, my translation to English) that according to hospital reports

"Meshi, an 18 year old autistic girl with cognitive impairment, arrived with a swollen stomach and on the verge of death, she was 'in sceptic shock' with no blood pressure, no pulse. Her extremities were cold so undoubtedly in the hours, the day preceding she wasn't healthy. Somebody should have checked on her. Nobody looked at her there. Nobody approached her. Nobody checked her. The doctors wrote that she had "agonal breathing", meaning she was in her final breaths. She was dying in her bed in that institution... Nobody raised a red flag."

Naama Lerner adds:

"There were deaths in institutions with question marks even before Meshi's. [For instance] Effie ben Baruch, may his memory be a blessing, whose blood had not yet dried."

Effie, an autistic young man from Bet Shean, a resident of the institution, Ramat Haifa, died five months before Meshi. (I wrote about that case in September 2019 here.)

Aleh donors will undoubtedly be spared the sobs of his mother:

"Effie was a happy boy, a delightful boy, a loving boy who caused others to love him." She breaks down, "They killed my child...The [closed circuit] cameras show that the aide choked him. [Effie also managed to tell his family that he was beaten by his caregiver at the institution. F.R.] and he lay sprawled on the sofa from 10 in the morning until the evening. They could have saved my child!" (My translation of what she said in the KAN segment.)

Dr. Reches explains the conduct of such institutions thus:

"If I were a director of a facility of this sort, I earn per capita, which means, I want to receive the payment from the Ministry of Welfare per head annually and at the same time I want to save all the expenses that I possibly can.  If I can operate a shift with one person, with one nurse, and to keep all the patients quiet with drugs, then I have earned money."

And it's safe to presume that nobody at the Aleh "Gala" will learn about the documented "choking" deaths of residents in Aleh institutions. Because the parents of those children did not publicize their tragedies, they were only sketchily reported in local newspapers in 2019 and 2000. Most citizens are unaware they occurred. (I wrote about two here.)

What I posted on my blog several months ago ["Institutions: The world goes one way, Israel and Aleh the other"] will also surely remain concealed from the Aleh supporters. Here's an excerpt:

"Some 6,100 people with cognitive developmental disabilities live in 63 dormitories... The overwhelming majority are institutions owned by private companies that naturally see before their eyes the bottom line. The above atrocities [the case of Effie ben Baruch and other cases of abuse] were committed in institutions against a background of a revolution in global awareness that is hastening an end to the locking up and isolating of people with disabilities from the community. In Western countries, the trend is towards the closure of large institutions and transfer of residents to independent living within the community... In Israel the Bizchut organization has been leading the demand for the closure of institutions, which has been ignored for many years. Only in 2011 did the Ministry of Welfare invite five international experts to draft a literature review of the transfer from dormitory residences to in-community living. 'Research findings demonstrate a clear picture: community services are more beneficial than institutional living for the totality of people with cognitive developmental disabilities', they stated."

Instead, it's a safe bet that attendees will hear that the institutionalized living option of Aleh is ideal for its residents and that no comparable alternative exists! 

Israel Prize recipient Major General Doron Almog will likely sing the praises of Aleh's largest branch, Aleh Negev, known also as Nahalat Eran after his late son who resided there from the age of 13 until his death at the age of 23 in 2007.

Who will "serve up" with that "magical" gourmet meal the "magical" message of equal rights, independence and true inclusion in the community?

Thinking of Canada

Chaya was rushed to hospital by ambulance this week
[Illustrative image from Shaarei Zedek's website]

We have been weathering an overwhelmingly difficult period with our youngest child, Chaya.

Then, just to stir things up a bit, my heart decided to "break" on me: I was hospitalized with Broken Heart Syndrome, a.k.a. Takotsubo Syndrome a.k.a. Stress Cardiomyopathy.

But after I’d returned home, thank G-d on the mend, Chaya decided to spice things up again with uncontrolled seizures rendering her unable to swallow either food or water. My husband rushed with her by ambulance to the ER. Throughout the 24 hours that Chaya spent in the aisles of the ER, my husband sat glued to a chair beside her.

After receiving IV fluids, she was launched on two new meds which we hope will improve her seizure and liver problems – Keppra and Prednisone. Perhaps they’ll also enable her to retrieve those minimal skills she’d acquired over many years – feeding herself and walking with assistance – which have entirely evaporated in the past week.

Our quest for some help at home is dragging on so we are still caring for Chaya ourselves while I try to sandwich in a bit of  recovery from my unexpected coronary event. “The system” (i.e. Ministry of Welfare and National Insturance) washes its hands of parents who opt to keep their children at home despite disability and illness (as I described in "Aleh 101" a year ago). “How dare you reject institutions like Aleh!” is basically the message.

Thus it was with particular disappointment that I encountered yet another PR plug for Aleh's chain of institutions. Dated December 23, 2016, it appeared in the local daily, Yisrael Hayom, a known mouthpiece for Prime Minister Netanyahu. Purportedly penned by a Canadian pediatrician, Dr. Lynn Hierlihy, it spouted the customary Aleh hype. But because it was a medical professional this time advocating the institutionalization of our most needy children, I was especially incensed.

Her blog post [here] first sang the praises of volunteering:

Volunteers are critical partners in the growth and development of society... And while these individuals are no doubt selfless, they will often admit to a single "selfish" motive: Volunteering makes them feel incredible. Numerous scientific studies have proved that volunteering reduces stress and improves physical and mental health.

She elaborated on the topic and I have no gripes about that. True, I have rarely found volunteers very helpful in caring for Chaya and much prefer professional input for people with profound disabilities. But, fair enough, she made an innocent point.

Afterwards, though, she segued to a florid profile of Aleh. I would have expected a pediatrician to appreciate the crucial role that a family and its love play in a child’s healthy development. And I mean all children – including those with disabilities. But apparently this one doesn’t.  To hear one instead extolling the virtues of closed institutions is baffling.

Here is her paean to Aleh:

Needless to say, our visit to ALEH Negev-Nahalat Eran was magical. Never before had I seen a rehabilitation or long-term care facility that so clearly exemplified how "the world is built on loving kindness." I fell in love with the children and their dedicated caretakers, and I embarked on a mission to raise awareness about ALEH upon my return home. I now do everything in my power to connect our community in Canada to the ALEH family. When my son celebrated his bar mitzvah, he requested that guests make donations to ALEH in lieu of gifts. Our synagogue has established an ongoing relationship with the organization, which I coordinate, to ensure that we continually give back to our newfound Israeli family in any way we can. And I take every opportunity to visit ALEH and lend a hand.

Dr. Hierlihy’s blog post is particularly confusing coming as it does from an Ontarian. Canada deinstitutionalized its care for people with disabilities several years ago. In the Spring 2009 (Vol. 28, No. 1) edition of  the Canadian Journal of Community Mental Health [here], we read that:

Ontario has recently closed its last 3 institutions for persons with developmental disabilities. Very little research has been conducted on Canadian deinstitutionalization projects, and the impacts and bona fides of such endeavours have not been well documented in Canada. However, the closing of institutions has occurred in most Western jurisdictions and has been the subject of much research in Australia, the United Kingdom, and the United States. Although community services are of variable quality, this literature review suggests that the Ontario plan to close institutional facilities in favour of community-based residential services will be of general benefit to former institutional residents.

That CJCMH article concluded that

Very simply, the institution cannot replace the community in providing individuals—including those with developmental and serious psychiatric disabilities—with the opportunities for the good life. There are no compelling client-related arguments left for keeping people with cognitive limitations, and possibly people with psychiatric disabilities, away from their families and communities.

Don’t Israelis with disabilities deserve the same compassion, the same dignity, the same loving care within their family and community as do Canadians, Dr. Hierlihy?

Back to hospital, this time as a patient

My body found a way to halt that downward spiral I was in.

Overwhelmed by my impending surgery (for severe POPS) along with my daughter Chaya's new medical crisis, I sensed impending implosion - the emotional variety.

My conversations were peppered with "I can't go on", "I'm going to have a breakdown", "I need help" rolling off my lips all day long. But certainly nothing that would land me in hospital.

Yet Friday night I developed weird symptoms - extreme weakness, nausea, vomiting and low blood pressure - and reluctantly took an ambulance to the emergency room, accompanied by one of my daughters.

When blood test results arrived and the doctor declared "You've had a cardiac event", I was  blown away and frightened. A diagnosis more like virus/dehydration was what I'd expected. "When could I possibly have had one?" I asked him incredulously.

After an angiogram which, thank G-d, didn't find any blocked  arteries, the cardiologists settled on the likelihood of Takotsubo Syndrome.

If you ever feel the urge to for a cardiac event, this is definitely the one to choose. But, sorry guys, it's overwhelmingly a post-menopausal women's condition.

For those of you female caregivers desperate for relief, relief, here's some more info about this relatively newly-categorized syndrome, only recognized in Japan since 1990 and in the West since 1998).

And for you over-stressed men, we'll see what my husband comes up with. He's been single-handedly caring for both Chaya and home as well as visiting me.

In the meantime, Chaya, treated with CBD alone, is still keeping her seizure rate low - but don't forget to keep that strictly under wraps. (Can't be too wary of that seizure-jinx!)

My husband also succeeded in eliciting a great sodium and potassium reading from Chaya in her latest blood test results so her dehydration is behind us. And while she's definitely not out of the gaunt range yet, the thin bulging vein on her jaw is now invisible. That leaves us with her liver and hematological issues to contend with. Our next appointment with the liver specialist on Sunday

I'm looking forward to having  her stand/walk and put the spoon independently in her mouth  again -   activities that have been deleted from her routine during my absence.

Takotsuba is apparently can recur - so we must somehow alter our home situation to prevent that. Consequently we've been desperately trying to contact the government where the social worker handling our daughter's case purportedly works. The hospital social worker told us that woman is the only key to any sort of government care assistance for Chaya's home care.

Were we to drive down to our local Aleh branch and deposit our daughter at the door, there is little doubt we would be treated to what their website calls "a break from the 24/7 attention require to care for them appropriately".

But because we are determined to keep our Chaya at home with us, we are rewarded by our so called "welfare state" with persistent and studious disregard.

Our new reality. Or: Don't do Depalept!

My daughter Chaya undergoing a battery of tests in hospital last week

Chaya endured several days in the hospital last week and, naturally, so did my husband and I (although he magnanimously volunteered to spend the nights there with zero-to-minimal sleep).

We brought her there after an ultrasound ordered by her pediatrician revealed the condition known as ascites. He'd been concerned by blood tests of the past five months which have consistently included several anomalies including low protein levels.

In hospital, she was drained of 4 litres (that's no typo!) of fluid that had accumulated in her abdomen due to a damaged liver. Tests were done to learn what caused that damage. Theories entertained by our pediatrician along with the new gastro and neurologist, now on the case are:

• The anti-epileptic, valproic acid, known in Israel as Depalept which Chaya has been on for some five years. (And see below for some up-to-minute news about that specific drug.)
• The genetic syndrome, Wilson's Disease (test results for this were all negative unfortunately)

The pediatric neurologist who first prescribed valproic acid and has been monitoring her since, basically dumped Chaya when we sent him the ultrasound results  Here's the email response we received:

"This is beyond the scope of my expertise. You need to talk to your family physician ASAP"

When we also asked that same neurologist whether he had submitted the request to the Ministry of Health for an increase in Chaya's cannabis allotment/month, as he had promised to do a month ago, he wrote us:

"I would stop the cannabis now. There is a problem with her liver and no one knows if this is the cause."

We haven't heard anything further from that MD. I'm still overcome with disillusionment - we thought he cared about Chaya.

And the unanimous view of the hospital staff is noteworthy:

Don't stop the cannabis. It is not the cause of her liver problems, they said  It's the valproic acid that's the likely culprit and she must be weaned off it asap.

Three days later, after receiving IV fluids and albumin, a visit from the hospital's wound specialist and a second one from the gastro specialist, Chaya was released.

She had suffered brand-new blisters/sores on her hands from the plastic tape the staff  used for the IV even though I warned them that she is intolerant of it. Her hand also swelled to three times its size when the IV malfunctioned. (that took two days to recede). And the gastro, though kind and sensitive about it, gave us a bleak prognosis: Chaya is now a chronic liver patient who will need fluid drainage every week or so.

So, what are the morals to be learned?

• First: Beware any abnormal blood test results when your child is on Depalept. Always delve further. Chaya had abnormal blood test results for several years but her neurologist reassured us that everything was fine. (Our pediatrician, on the other hand, was persistently concerned but politely yielded to the  prescribing neurologist's opinion.)
• Second: Try cannabis oil - both CBD and THC - to treat the epilepsy. While Chaya was being drained of the ascites, she began to seize repeatedly, racking up some 15 of them. The ultrasound technician who also inserted the drainage needle pressured me - actually badgered is more accurate - to give Chaya some sort of drug to stop them. Instead, I waited for my husband to bring our THC oil from home. In the past it has halted such attacks and, once again, thank G-d, it worked its magic.

The same neurologist who just dumped us was appalled when we informed him several months ago that we'd easily gotten THC from our government-licensed cannabis supplier and were using it on rare occasions.

"You should have checked first with me. There are no studies results to prove THC to be effective against epilepsy. Only CBD oil." (The reason is that no THC studies have ever been carried out.) 

Our personal experiences with the stuff didn't interest him in the slightest.

And while we grapple with this new reality - a child who is both profoundly disabled and now chronically ill - we learn of yet another new term and concept that  Aleh has concocted to keep government and private donor funding flowing in to its coffers. They've dubbed it the "High Dependency Wing".

It is a puzzling concept. After all, for decades Aleh has been advertising its product as aimed at children with severe disabilities. Naturally, that translates as  "highly dependent". Yet now, suddenly, they announce the planned construction of its first separate wing with that label.

Wasn't the entire enterprise already "High Dependency"?

Here is the way Aleh's PR team touts it:

In Israel today, children and young adults with complex medical conditions requiring advanced nursing care are often hospitalised long term or placed in old-age homes, due to the lack of a better solution within a safe medical environment. These settings offer little or no opportunities for rehabilitation, education, social activity, or the warmth and love of a home. Being confined in this way drastically inhibits the children’s development, and is an agonising and painful option for parents and families.
The solution is to establish high-dependency wards within a rehabilitative environment so that children with complex disabilities and medical conditions can live a more enriching life.

Yikes!  When will our government and society get it: An institution is not a home! A ward is not a home! The services of a paid staff do not constitute "warmth and love".

Now back to the valproic acid update I mentioned above. Minutes before this post "went to press", I was alerted by a MedpageToday email bulletin to a Reuters report [here] dated November 16, 2016 that France has just created a compensation fund for valproic acid victims.

The French parliament voted to create a nationwide compensation fund and amended the 2017 budget bill late on Tuesday to set aside an initial 10 million euros ($10.7 million) for claims relating to Depakine, a brand name for valproate, which is also used to treat bipolar disorder. Parents of those affected say the French state and Sanofi were too slow to warn of the side effects of the drug, which has been used to successfully treat epilepsy since 1967, after the risks to fetuses became clear by the early 1980s... "The 10 million euros are a starting point," Health Minister Marisol Touraine told lawmakers in the lower house of parliament. "In future years, the sums should be much higher." Touraine told parliament later on Wednesday that compensation would ultimately be paid by "those deemed responsible" without giving details. "I regret that Sanofi didn't seek an amicable settlement as a matter of principle. I hope (Sanofi) will change its position," she said... French social affairs inspection agency IGAS estimated earlier this year that between 2006 - when the medicine started carrying a health warning - and 2014 - when prescription rules were further tightened - some 425 to 450 babies suffered congenital birth defects or were still-born due to the drug... ["France sets up fund for Sanofi epilepsy drug victims", Reuters, November 16, 2016]

And that's without factoring in hepatotoxicity (i.e. drug-induced liver injury, acute or chronic ) which is included in the drug's black box warning and which is now making Chaya's life even more of a misery than it already was.

We will undoubtedly be returning to the hospital either tomorrow or Sunday to drain Chaya's fresh accumulation of fluid. Stay tuned for a tally of litres removed this time.