Update: Epilepsy medication

We are nearing the end of the 6 mg phase of Fycompa (generic name: perampanel) and approaching the therapeutic dose of 8 mg.

We still haven't located anyone else taking this drug which received its first FDA approval in 2012, for patients over 12 years old. And in 2018, was approved by the FDA for anyone over the age of 4. 

Some of the possible side effects are irrelevant to Haya.

For instance slurred speech; we're actually hoping it does give her some slurred speech!

And deterioration in gait: any sort of gait would be great!

Reaching out to people with disabilities in closed institutions

Image Source: Ministry website

It seems Israel's Ministry of Justice means business. 

I just read the questionnaire it has disseminated in simple language for the cognitively impaired. It is clear that the Ministry is now seriously pursuing abuse and neglect in institutions for people with disabilities - which, by the way, includes ALEH and ADI.

The questionnaire, which I mentioned in my last post [March of the ministers, January 9, 2021], asks pointed questions (which I have translated to English). 

Here are a few:

Do you feel safe in your residential framework?
Responses:
Yes

No

Don't know

When something happens in your framework that bothers/upsets/disturbs you, are you comfortable approaching someone in order to complain?
Responses:
Yes

No

Sometimes - there are times that I do and times that I don't.

If something in the framework upsets you, whom do you usually approach to complain? (Mark all the answers that are appropriate).
My family
The social worker in the framework
The director of the framework
The supervisor of the framework
Someone in the Ministry of Welfare
The social worker in the municipality
The parents committee of the residents in the framework
A social organization (for example Bizchut, Akim) or to a private lawyer
The Commission of Equal Rights for People with Disabilities
Someone else (write here to whom)

Has this happened to you?
My room was in bad shape/condition (for example, there was broken furniture).
Someone from the staff hit you (hurt you on your body)
Someone from the staff insulted you or cursed you
They tied you to a bed or they left you in locked room.
Someone on the staff took some of your personal things (for instance, your telephone)

Responses:
It happened to me and I complained
It happened to me and I didn't complain
It didn't happen to me

Has this happened to you?
They don't keep your apartment or framework clean
They don't keep you or your body clean
They don't include you in decisions about yourself
They didn't allow your family members to go into your room during visits (before Corona)

Responses:
It happened to me and I complained
It happened to me and I did complain
It didn't happen to me

Did you ever complain about something else? 

(Write here what you complained about. You don't have to answer.)

How much did the one who took care of your complaint listen to you?
Responses:
Listened closely
Didn't listen so much
Didn't listen at all

Did they solve the problem you complained about?
Yes
No

. . .

Here's hoping the existence of this questionnaire will serve as a deterrent to the staff of those institutions. But that would only be a step in the right direction.

We can't abandon the ultimate goal: putting these institutions in our rear view mirrors.

Perhaps, when scrutiny, transparency and enforcement of the law - of which this questionnaire is one example - spreads, the appeal of them evil will wane. And the rights of people with disabilities to remain with their families and in the community will be respected.

March of the ministers

Image Source: JNS

The parade of politicians paying their respects to Aleh and ADI has been nothing short of disgraceful. 

We saw Yoav Galant, Minister of Education; Yuli Edelstein, Minister of Health; President Reuven Rivlin; Knesset members Haim Katz and Etti Attia trotted out by Doron Almog in recent weeks. They all dutifully parroted the PR team's fulsome praise of Adi - Nahalat Eran.

Not to be outdone by Almog, his ex-partner, Rabbi Yehuda Marmorstein, collared Knesset member Bezalel Smotrich who visited his Bnei Brak branch where he extolled Aleh. (True, he's a low-ranking celeb but Aleh appears to be trailing ADI in every realm of the PR competition. Its websites and Facebook pages are all still out-of-action.)

A logical conclusion after that Ministers' March would be that our government still just doesn't get it. It is incapable of grasping what the rest of the world realized years ago: that institutionalization injures and violates the human rights of individuals with disabilities.

But here is a touch of encouraging news. Our Ministry of Justice has just taken a stance against institutionalization. It is urging residents of institutions and their families to share their tales of woe. The goal is to enable the Ministry's intervention on their behalf.

Bizchut, Israel's Center for the Human Rights of People with Disabilities, has circulated the Ministry's new questionnaire which covers abuse, neglect and other human rights violations.

Here is Bizchut's Whatsapp memo to its supporters (translated from Hebrew by me):

"Residents of institutions and hostels and their families: It is time for you to make your voices heard! You have contacted us - at Bizchut - many times with disturbing accounts of the situations in institutional frameworks. Generally you reach us after failing to receive an appropriate response from the Ministry of Welfare. We have flooded the Ministry of Justice with these difficulties and following our pleas, the Ministry has disseminated a questionnaire aimed at examining how to enhance the protection of people with disabilities living in institutions. 
!! It is important that the maximum number of people log in and portray the conditions in institutions! Please spare a few minutes to answer the questionnaire, and also forward it further...
Please note - there are separate questionnaires for residents (which must be returned by 30/1) and for families (which must be returned by 20/1). All questionnaires are at the bottom of the page in the link.

The version for residents is in simple language and is 20 pages long. Here are a few sample questions:

How would you like to answer the questionnaire?
I would like to answer the questionnaire without writing my name:
I would like to write my name (write your name here):
Which sort of disability do you have? -

mental, developmental or cognitive

emotional (mental health)

autism

physical disability (in movement)

hearing disability (deafness or hearing impaired

visual disability (blindness or serious visual impairment)

I don't want to answer

Other disability (write here which):

And here is how the Ministry described its new effort:

"As part of the work we do in the social cluster of the Advice and Legislative Department of the Ministry of Justice, we are examining ways of improving our involvement, and where necessary the protection of people with disabilities who reside in out-of-home frameworks, with an emphasis on the means of presenting complaints and their investigation."

I am so thankful every day that our Haya has been spared the plight of other Israeli citizens with disabilities who are locked up in large institutions - like Aleh and ADI!

Here (over on the right) is Haya receiving her first Fycompa pill of 6 mg. It only took about ten hours on the phone to various offices of our health fund to finally purchase them. And for no comprehensible reason other than bureaucratic whim! 

Nothing works like a haranguing mom.

Sweet home, Jerusalem

In the hydro pool this week

First, we are at home, thankfully, having avoided the morass of the ER and the hospital ward ["Status report: Status epilecticus"]

Last Friday night, the hard seizures reached 3-minute intervals. My med drawer only had Diazepam which expired June 2018 and the pharmacies had none in stock. (Doctors tend to discourage its use at home so there's not much demand for it). 

But I was determined to keep Haya at home. So I relied on the pediatrician's assurances that those dates are probably posted just to compel us to buy fresh meds. And I gave it.

Folks, you can now rest assured that those expiry dates truly are, at least in some instances, somewhat advisory only. That 2018 Diazepam worked like a charm, at least for us. Haya slept seizure-free for some eight hours.

(Apparently, not all drugs are as resilient as our Diazepam, but undoubtedly, many are. So check before you discard. I'm so thankful - but have no idea why - I didn't include that Diazepam along with all the other expired drugs I recently tossed.)

I've still got six more doses here but for now paracetamol and Advil (ibuprofen), given alternately throughout the day, have been adequate.

That's in addition to her anti-epileptics and cannabis, of course.

While I can't say she's fine, relative to what she just endured, things look positively peachy.

She floated calmly in the hydrotherapy pool where we take her for an hour on Monday, although, "slept" would also be an accurate description.

And has even done her 45 minutes of assisted walking a couple of nights this week..

Today her carer took her outside for her first time since her deterioration began.

Here is Haya, sleep-floating (at the top) and bundled up for her walk (on the right).

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.

Forgotten justice

Image Source: Amos Ben Gershom/GPO 

Israel just hosted "heavyweight" Trump administration official Jared Kushner, with PM Netanyahu lavishing fulsome praise on him: 

President Trump's Abraham peace initiative has already created a whole series of breakthroughs. Jared you've successfully reinforced American leadership in the Middle East and in Middle East peacemaking. I think you've greatly enhanced American standing in the region... I thank you Jared and I want to thank all of you for assisting this great effort. We will never forget it. Thank you all. [Link]

At this point I believe we can safely conclude that the "peace initiative", "the whole series of breakthroughs" and the "groundbreaking visit" of which our PM raved will certainly not lead to justice for our murdered child, Malki, during the Trump era.

Justice is not a "breakthrough" on the Trump Middle East team's agenda. And, make no mistake, it was a team comprised of individuals armed with the power, influence and, we would have presumed, the moral compass to propel them easily toward that goal. 

We certainly did our utmost during the past four years to galvanize them in that direction. We pleaded with them - via emails, personal messages, tweets and a front page newspaper ad - to demand that Jordan extradite mass murderer, Ahlam Tamimi.

Jordan has steadfastly refused to comply with the US Department of Justice's demand for her extradition. A determined Hamas operative, she murdered two US citizens in the 2001 Jerusalem Sbarro bombing in which a total of 15 men, women and children perished. She openly boasts of that achievement to this day. 

But neither the existence of a valid extradition treaty signed in 1995 by the US and Jordan, nor the formal US demand for her have moved King Abdullah II.

Trump administration officials could not care less. To wit, this week, David Schenker, the Assistant Secretary for Near East Affairs, U.S. Department of State, marked 20 years since the Free Trade Agreement between Jordan and the US in a commemorative ceremony.

He subsequently gushed this tweet

I have developed a deep appreciation for the friendship between our two countries and Jordan’s role as one of the United States government’s most important partners.” #FTA20Strong

Is this the sort of treatment that the US tolerates from its other "most important partners"? Defiance, rejection of an extradition treaty, the harboring of a murderer who is one of the FBI's Most Wanted Terrorists? 

Undoubtedly not.

Jordan has enjoyed undeserved kid-gloves treatment from the US government for long enough. It is high time that justice and enforcement of lawful treaties were given the respect that is due them.

President Rivlin joins the pack

Image Source

Last week, during Chanukah, our President joined the list of Israeli politicians and dignitaries who have honored Aleh or Adi with a visit. 

Like the others, some of whom I've mentioned (To quote Diana Ross: I'm still waiting and Unexplained upheaval at Aleh?), Reuven Rivlin showered Adi with fulsome praise. But, his hyperboles so far surpassed those who preceded him they bordered on parody. 

Example:

"During my visit here today, you all gave me so much hope, so much love, and so much light... Doron,[Doron Almog, CEO of Adi] my dear friend, an IDF hero and an Israel Prize Laureate, what a wonderful torch you have lit here, this little slice of godliness. It is a lighthouse of giving, a lighthouse of love, a lighthouse of faith. Here, you do miracles, in these days, at this time, and you know how to light many candles from just one small jug of oil. Thank you for establishing the ADI Negev-Nahalat Eran rehabilitative village, this precious light that guides us all."

I mean, really, "this little slice of godliness"??? Mr. President, I believe it's time for you to find a new speechwriter. 

The President is now the recipient of a letter of complaint which I sent him, just as I did the Minister of Health Yuli Edelstein, the Minister of Education Yoav Galant, and the Dutch Ambassador to Israel, Hans Dokter. 

The first two never responded - despite my repeated resends - while the last sent me a lame defense of institutionalization.

Regarding the Adi vs. Aleh confusion [Give up? Never]] I'm afraid there have been no fresh revelations. My Personal Messages on Adi's Facebook page inquiring about the split now number 3. Adi's responses remain at 0.

And here is Haya engaged in one of her favorite activities. It's right up there with her hydrotherapy, her walking and her eating. 

Now, I realize she is 25 years old and those achievements are unimpressive at this stage in her life, but they thrill me nonetheless. So here she is kicking away.