What gives with all this king worship?

New York City, November 21, 2019: The Washington Institute disturbingly
bestows an award on Jordan's king [Image Source: The king's own website]

Here I was, convinced that one of the basic tenets of American democracy is the rejection of monarchic rule. But it seems I erred.

These days, the Jordanian ruler, King Abdullah II, enjoys the fulsome adulation and praise one would expect for a selfless hero who has rescued a dozen children from a blazing building. 

He is feted repeatedly at the White House. Bi-partisan delegations from the US Congress fly to his Amman palace to honor him. Leaders of major Jewish organizations attend his conferences and breakfasts. Numerous international media outlets extol his virtue and wisdom. 

And last week, the esteemed US think tank the Washington Institute for Near Policy handed him its Scholar Statesman Award.

All of this, in itself, is puzzling. 

But what makes it infuriating is that the recipient of that adulation is a dictator - yes, that's what an unelected ruler is, king or not - who has defied the U.S. Department of Justice. 

He refuses to extradite one of the FBI's Most Wanted terrorists. 

He denies the validity of a treaty of extradition signed and ratified by his father, King Hussein, with the US - a treaty which the US State Department says unequivocally is in force.

Add to that mix the fact that the terrorist whom Abdullah is embracing is the mass murderer and Hamas operative, Ahlam Tamimi, who has boasted numerous times of her evil "achievement" to her admirers on TV broadcasts. 

The terror bombing she orchestrated slaughtered sixteen innocents, including eight  children. One of those, my precious Malki, was 15 years old when this monster took her from us. Malki was a citizen of the United States.

What we have here is a travesty of justice of the first order. 

Nevertheless, last week three of Israel's major news services - Haaretz, Times of Israel and Jerusalem Post - chose to report that award bestowed with great pomp and ceremony by the Washington Institute with not even a whisper about Abdullah's inexcusable conduct.

Instead, all three of them mindlessly followed the lead of all the other King Abdullah worshippers. The Times of Israel did so despite having published our op-ed just one day earlier [see "A tribute unfit for a king who harbors our child’s killer"] .

My husband and I, for whom Malki's murder remains the source of deep pain, are utterly baffled by this sweeping acceptance of King Abdullah's terror-abetting conduct.

But we will never cease our struggle to arouse national leaders and news industry magnates. After all, like every other murder victim, Malki deserves justice.

Who knew?

So here I am immersed in researching and coping with Haya's epilepsy but oblivious to an important epilepsy detail: November is Epilepsy Awareness Month!

I just learned that on a visit to the Facebook page of The Families SCN2A Foundation. The page also noted that one-third of all epileptics have refractory seizures.

But while that means that in one sense Haya has plenty of "friends" in the same boat, she is still in a distinct minority.

In 2018, there were only

276 known SCN2A cases identified to date (see Table S1 in the Supplemental Information online)... At present, the number of known SCN2A cases is roughly
equal between IEE [Infantile Epileptic Encephalopathy] and ASD/ID [Autism Spectrum Disorder/Intellectual Disability], likely reflecting differences in the adoption of genetic testing.

[Source: "Progress in Understanding and Treating SCN2A-Mediated Disorders", online here]

Has The Washington Institute lost its moral compass?

Source: Washington Institute website

It was difficult not to choke upon reading the announcement of this year's Washington Institute honoree ["17-Nov-19: Jordan's king to be honored for profound commitment to peace and moderation"]

Joining a list of truly distinguished and deserving past recipients of its Statesman-Scholar Award is a dictator and terror-abettor. A man who has given refuge to Ahlam Tamimi, confessed murderer of my precious daughter Malki, and of seven other children and eight adults.

The members of the esteemed Institute have selected as its 2019 recipient a man who has steadfastly refused to extradite Tamimi to stand trial in the US. Two of her victims, including Malki, were Americans. 

In doing so, King Abdullah is defying a 2013 indictment and demand for extradition by the US Department of Justice ["13-Nov-19: Thank you, Mr Foreign Minister"].

As the US State Department reiterated incontrovertably earlier this month in an annual report ["03-Nov-19: In Washington, a step towards bringing the Sbarro bomber to justice"], the US recognizes as valid and binding the extradititon treaty signed and ratified with Jordan in 1995. 

Jordan has in the past extradited several of its citizens to the US in accordance with that treaty. 

But now, Jordan - which as we know is an absolute monarchy - has declared that treaty void ["23-Mar-17: Looking for justice in Jordan, Jerusalem and Washington"]. That's a convenient excuse for protecting this evil woman who has boasted of her "achievement" repeatedly on TV. 

But we are not obliged to buy that excuse. In fact, as moral, rational humans, we are obliged to fight it because it is nothing short of a brazen travesty of justice.

Yet instead the moral, rational humans at the Washington Institute are rewarding that travesty and lauding the king for his "profound commitment to peace and moderation" and for opposing his region's "violence and extremism".

On the right, Malki at the center of my family at a celebration
just weeks before her life was stolen from us by the woman in the
State Department reward poster on the left

I would presume that masterminding a terror bombing in Jerusalem's Sbarro pizzeria when it is filled with mothers and children on a summer's afternoon qualifies as "extremism". And I also presume that refusing to allow the trial of that mastermind would not qualify as a "profound commitment to peace and moderation."

Which leaves me curious as to what rationalization the esteemed members of this institute can offer me for the infuriating decision to "celebrate as outstanding leader" this opponent of the most basic tenets of justice and morality.

My child was a kind, loving, generous talented girl who volunteered with children with disabilitites, played the classical flute, sang beautifully and was a loving daughter. She deserves for her murderer to be behind bars. Nothing more, nothing less.

A "fail" for Phenytoin

Haya and me walking in the kitchen seven days
after we stopped the Phenytoin

One week after starting her on 100mg/day of Phenytoin [background here], Haya had a couple of horrific days, seizing terribly and for hours on end. Nothing I gave her stopped them.

On the second horrific day, after five hours of that hell I wrote her new neurologist about it. But even before her response, I just stopped administering it.

 
She emailed us, agreeing that in rare cases this drug can exacerbate instead of improving the situation. 

I pointed out to her that on the day of five hours worth of convulsing, Haya also had a bloody nose and her menstrual period. Now, she never gets the former, and hasn't had the latter in about a decade. The neurologist attributed the bloody nose to our dry weaather. I doubt that; we often have dry weather but, as I noted, never a bloody nose. The menstruation stumped her. 

Well, the nose dried up quickly. The period, though light, is still ongoing. All very strange.

 
So we're back to square one with medications. 

The neurologist hasn't suggested any others to experiment with. I hope she won't jump to the second option she mentioned after medications: the Ketogenic Diet. I haven't got the stamina for that anymore. 

I was some twenty years younger the last time we attempted it. We persevered then for 10 months and only ditched it when Haya began vomitting several times a day from the high fat content. 

The neurologist was pretty eager for us to try it when we visited her two months ago. But she seemed even more eager about the Vagal Nerve Stimulator surgery. The idea of surgery leaves me positively cold particularly since a surgeon warned us a couple of years ago that it would be "complicated" in Haya's case. She has had an old, non-functional VNS stuck in her neck since 1999. It is undoubtedly coated with all sorts of tissue by now.

So Haya is back to seizing quite a lot and functioning poorly. It is a bleak situation and her new diagnosis of Epileptic Encephalopathy Early Onset 11 due to an SCN2A de novo mutation only bleakens it more.

The academic articles about her syndrome which we receive thanks to Google Alert make it clear that there is currently no salvation our there for Haya.

This last one, for instance, taught me that her current seizure situation qualifies as Status Epilepticus.

A dream that cries out for justice

My Malki, not long before she was taken from me

Last week my Malki appeared to me in a dream - as she has only done some four times in the past 18 years.

She felt so close and alive. I welcomed her warmly but with deep reservations, sensing that for some unarticulated reason her stay would be limited. But it was a joy to have her in our midst again.

I remarked to her that she probably only had a basic cellphone and assured her I'd get her a smartphone. On the day of the terror bombing in which she perished, I frantically called her phone in vain for many long hours. My husband reassured me that cell phone lines were all down as a result of the ataack; no need for concern.

So it's no wonder I commented about her phone in my dream.

My apparition of Malki told me she was about to leave on a school trip for a while but I urged her to give that a miss and stay home with the family instead.

Then I awoke, sad, bereft, disappointed, cheated afresh - a feeling I can't truly convey since only a bereaved parent would comprehend it.

Nonetheless, I would like to transmit this dream somehow to the three congressional delegations that flew to Jordan in the past month to honor and praise its dictator, King Abdullah II. Each of them praised him fulsomely for, among other achievements, his commitment to fighting terrorism.

None of the US legislators hinted at, let alone expressly referred to, his regime's refusal to comply with the US Department of Justice's 2017 demand for the extradition of one of the FBI's Ten Most Wanted Terrorists, Ahlam Tamimi. 

That mass murderer, a Hamas operative who masterminded the 2001 Jerusalem Sbarro bombing, has enjoyed refuge in Amman since 2011.

Among the eight men and women and eight children Tamimi slaughtered were two Americans, one of them our 15 year old Malki.

The US State Department has just stated unequivocally that the extradition treaty signed by the US and Jordan in 1995 is valid ["03-Nov-19: In Washington, a step towards bringing the Sbarro bomber to justice"]

Jordan's King Abdullah II - via his judiciary - has declared that same treaty null and void.

How many more US congressional delegations will fly to Amman to hand this hypocritical "friend" a free pass for his defiance.

And how many more times will the White House fete him as an honored guest and "partner" in its anti terrorism campaign. It has already done so multiple times.

I urge any Congresspeople or White House officials now contemplating a tete a tete with the terror- abetting Jordanian dictator to remember my child, Malki and the fifteen other victims that Tamimi boasts publicly of murdering.

The United States is the single largest donor of assistance to Jordan [Source: "Jordan: Background and U.S. Relations", Updated October 17, 2018 - Congressional Research Service, at page 13]. 

My suggestion - make King Abdullah this reasonable offer.

Extradite Tamimi in return for continued lavish US financial and political support.

That's an entirely justified quid pro quo!

Calling moms of profoundly disabled kids

As I mentioned, I joined a Facebook page for mother's of children with special needs recently and it's getting my goat.

Most of the posts are either grumbles about their childrens' challenging behavior, or about the bureaucratic hurdles faced in securing every single special service on offer for this population. And they all have some weird aversion to naming their children's "disabilities".

So posts are riddled with acronyms.

Here's a list (in no particular order) for you to test your special needs acronym aptitude:

• FAS
• CAPD
• ASD
• DPNA
• ABA
• ADHD
• DBT therapist
• CBT therapist
• LD
• SN
• ODD
• PTSD
• HFA
• SPD
• DS

Good luck! Responses welcome.

Their world is so alien to me that I'm on the verge of starting a group for parents of the profoundly disabled.

So far I've only come up with this name: Moms of the Profounders.

But I invite your suggestions for a better one.

Next Up: Phenytoin!

Haya's first dose of the new med last night

Very excited to share that Haya will finally try out a new anti epileptic - one that has been found successful in a significant percentage of EIEE11 cases. It's the first med change we're making since her diagnosis with that syndrome three months ago (see "At last - a pretty solid diagnosis")

I loathe giving her three anti-epileptics at once. But as the neurologist emphasized, the cardinal rule is one med change at a time. Once Haya's settled into the therapeutic dose of Phenytoin (also sold as Dilantin and Phenytek), the doctor promises to remove at least one of the others. 

She even asked me whether I thought either of them is effective. I told her I couldn't judge but did remember which was added last, Vimpat (lacosamide), and didn't think it had made a difference. 

The truth is, her other med, Keppra (levetiracetam), isn't anything to write home about either. 

I got the script for Phenytoin yesterday. And the photo above shows Haya getting her very first Phenytoin pill sold here as Epanutin.

When Haya's pediatrician heard that this was the drug selected by the neurologist, he was surprised. "When I was doing my residency, back in prehistoric days", he recalled, "we had only two anti-epileptics to administer: phenobarbitol and phenytoin. There are so many new ones on the market now." 

But those new ones just don't help Haya. Wikipedia says:

Phenytoin was first made in 1908 by the German chemist Heinrich Biltz and found useful for seizures in 1936. It is on the World Health Organization's List of Essential Medicines, the most effective and safe medicines needed in a health system.

Here's hoping that stellar reputation will prove well deserved!