Haya's update: It's a downer

I'm holding a made-in-Israel Cannabis

THC drops product in this photo

Meds

Today is Haya's first day without any Vimpat. We had her on 25 mg per day for about ten days, down from her maximum of 150 mg twice day. I intended to wait until her seizures stabilized before zapping Vimpat entirely but seizures have been rampant. 

And we need Vimpat out of the picture before we can accurately assess Fycompa.

My hunch is this med isn't Haya's magic bullet. Which means we'll probably move on to the next gun - the Keto Diet.

These days, when all else fails I've been giving THC drops to stem the strings of seizures. Here she is (below) after 22 drops of it looking, I'd say, rather high.

Blood

It took about two weeks to organize but I was finally notified by our health fund that tomorrow, weather permitting, a visiting nurse will come to our home to draw Haya's blood. It will be used to do routine tests along with a Covid-19 serological test.

If we find that she has antibodies, we can stop deliberating over the vaccine - at least for a few months.

Hydro

On Monday, after a five week, Covid-19-caused hiatus, Haya finally returned to the pool. She relaxed and floated independently for the most part but her body often tilted to the left. That was disappointing. 

I showed my son-in-law who is a physiotherapist/hydrotherapist a video clip of her in the water. He recommends re-positioning her arms to the right as they rest on her chest and placing her left hand on her right. The clip shows that they were reversed. 

Can't wait to try those tips next session.

Haya

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I often read posts by parents of children with a range of disabilities on various support group sites. Some are caused by the same genetic mutation as Haya's, some by other mutations and some by none. It's a very disheartening pastime.

I'm usually struck by how much higher everyone's level of functioning is than Haya's. And when they have epilepsy, by how much their seizure-control surpasses hers.

On a site devoted to people with Downs and their families I encountered a word now circulating: other-abled, as an alternative to the "D" word.

The truth is it's entirely inapplicable to Haya. She simply isn't other-abled. She truly is disabled, profoundly and I prefer to call a spade a spade.

Still in the tunnel, looking for the light

Still grappling with Chaya's liver disease - as yet undiagnosed definitively - and from the persistent pressure sores.

We had a harrowing Saturday night involving an hour and a half of consecutive seizures which had us with phone in hand to call an ambulance. But thank G-d we were able to avoid hospitalization as well as starting that new anti-epileptic, Vimpat. But we do now have a stock of the stuff in our medicine drawer at the ready,

As long as feasible, we'll continue to treat Chaya with CBD oil, three times a day and THC oil whenever the seizures erupt. (Those are the two forms of cannabis oil available.)

Chaya is also getting diuretics to remove the ascites (fluid accumulation) caused by her liver damage, Ridding her of fluid has resulted in an extreme gauntness that shocks us anew every day. Bones and veins that were not meant to be seen by the naked eye are protruding everywhere.

We were also blown away by an email we received a few days ago from the pediatric neurologist who had been treating Chaya for the last five years and who had basically told us to go jump in a lake when we first notified her of Chaya's liver damage 6 weeks ago. This week she wrote a one-line inquiry about Chaya's condition. Neither my husband nor I have yet managed to deal with our disappointment or to figure out what sort of response to write.

And while we struggle through this without any help from "the system", that institutionalization empire, Aleh, churns out its lies in a steady flow of fresh PR releases.

Here's one that caught my eye. I was struck specifically by the repetition of the term "family" to describe Aleh. As if hammering away at that appealing mendacity will make it true.

The Aleh Family - an Unbreakable Bond | ...ALEH is a family, so when a member of the family celebrates an important milestone, it only makes sense that everyone is involved... As the ALEH residents, staff, and volunteers danced with Elisheva and her groom, it was clear that they were a real family.  

We all know what a family is - and no residential institution comes close to fitting the description.

A new law for others and a new oil for Chaya

Israel's parliament, the Knesset [Image Source]

Every so often, Bizchut ("The Israel Human Rights Center for People with Disabilities") pats itself on the back and shares the news with its supporters. Today, the organization considered itself worthy of a fresh pat. The occasion was passage of a new guardianship law:

We are delighted to announce a historic achievement that will impact on 50,000 people in Israel who have a guardian. Supported decision-making, an alternative to guardian promoted by Bizchut during the past two years, has been included in the new guardianship law just approved by the Knesset.  This change was actively supported by a coalition comprising 18 organizations who worked together on the issue and impacted by a Bizchut-led Facebook campaign that reached over 200,000 people. [From a Bizchut e-mailer I received today]

The Bizchut website explains that on March 29, 2016,

the Knesset voted in favour of the Amendment to the Legal Capacity and Guardianship Law. This amendment constitutes a substantial reform to the law and includes a number of dramatic changes: Recognition of supported decision-making; Recognition of lasting power of attorney; Cancellation of the term ‘ward’; Reduction of cases in which a guardian can be appointed to situastions in which this is necessary in order to prevent harm to a person when no less restrictive option is available; Cancellation of the option of appointing a general guardian without detailing the issues under his or her authority; Defining the individual’s wishes as a guiding element in the guardian’s considerations; Defining the rights of persons under guardianship such as the right to receive information from his or her guardian and the right to independence and privacy; Defining the right to legal aid representation in cases of involuntary hospitalization; Limiting the ability of a guardian to force a decision relating to fundamental issues; The new law constitutes a rare opportunity for recognizing the right of every person to legal capacity and to make the decisions that affect their lives...

This is indeed welcome and important news. But it won't affect the thousands of severely and profoundly impaired individuals including my Chaya. For her, full guardianship isn't even at the bottom of her list of worries because she couldn't survive for a moment without it.

While involved in campaigns like the one described above, Bizchut has been neglecting the needs of those like my daughter for whom this law is utterly irrelevant.

Specifically, it has neglected its past, forgotten mission to push for de-institutionalization and a redirection of funding to families caring for their children at home.

As the recent selection of recipients of the 2016 Israel Prize for Lifetime Achievement makes abundantly clear [see my earlier post, "In love with institutions"], this segment of the population with disabilities isn't on anybody's radar in Israel. In the eyes of mainstream NGO's and our government, the solution to their problems is simple: institutions, and the larger the better.

On a happier note, a lengthy CNN segment profiled our largest grower and distributor of medicinal cannabis, Tikun Olam, Another video report ["Video: Israeli boy finds relief through medical marijuana", April 2, 2016 - here] profiled a Haifa couple who - as we do - purchase CBD oil for their son who suffers from intractable epilepsy and severe CP. The couple noted that it supplements the CBD, which their son receives several times/day, with THC oil which it administers only on "bad days.".

Our THC bottle from Tikun Olam

I have been toying with the idea of trying THC but presumed that getting the stuff would involve a daunting string of phone calls and paperwork. But that video piece prompted me to  take the plunge.. I was blown away to learn from Tikun Olam's nurse that all we needed was a doctor's written authorization - and a pediatrician would suffice!.

Now, just three days after watching the video clip online, we are the proud possessors of this bottle of THC.

Today, while Chaya is actually having a "bad day", i.e. having lots of seizures, they are accompanied by her "central fever". This is an inexplicable neurological symptom which occasionally appears on the scene through no fault of any of us. When it does, Advil does the trick. Once the fever is lowered, the seizures taper off.

So I'm saving the THC for a "no-fever-bad-day". And, of course, you, readers, will be the first to hear how Chaya responds to it.