CBD vapors: Our new frontier

Last week, we brought Chaya back to the epileptologist who first examined her in September 2018 ["Making it a round dozen"].

During that first visit, she had spent a solid hour patiently recording Chaya's history and recommending several new steps we should take. But once home, we hit snags that prevented us from proceeding. The primary one was our inability to contact her staff. They never returned calls or emails and we needed to coordinate everything with them. 

 
I was prepared to just forget about this epileptologist notwithstanding her superb credentials and top grade recommendations. But the Hubby preferred to persevere. 

So, last week we expended a second round of time, energy and money to shlep back to her with Chaya. As it turned out, the latter proved entirely unnecessary: the doctor didn't so much as look at Chaya, let alone touch or medically examine her. 

One of her concerns back in September was Chaya's thinness. This time she asked us whether she had gained weight since our last visit. But she didn't trouble to weigh her on either occasion. Chaya might as well have been invisible and our efforts to bring her to the office were clearly wasted. 

I was puzzled and annoyed. What's the consensus out there? Am I being unreasonable?

This time around, her assistant did contact us a few days after the appointment. She is instructing us on how to switch Cannabis CBD suppliers. This is a complicated process involving reams of paperwork required by the Ministry of Health. 

The switch is necessary in order to procure CBD in vapor form. which the epileptologist believes is absorbed more thoroughly than the oil Chaya currently receives. 

To start with, we will divide dose between the two forms.

We are pursuing this option over the one that the epileptologist urged on us most enthusiastically, namely: surgery. She is keen to have Chaya's twenty year old, inactive Vagal Nerve Stimulator (VNS) removed and replaced with an updated, more sophisticated version. 

We had this urged on us three years ago by another neurologist: the one who destroyed Chaya's liver with Valproic Acid and then washed her hands of us. So, I'm sure you'll understand why it isn't an option for which I harbor any warm sentiments.

At that time, we got as far as meeting the surgeon himself. He informed us that the surgery would be "complicated" but doable. He too was eager, though he warned us that a pre-requisite would be Chaya's gaining some weight.

But before Chaya could oblige us with some weight, liver failure struck and the neurologist who had been touting the VNS surgery, as I mentioned, fled the scene. (After alleging that the liver failure was more likely caused by the CBD than by the Valproic Acid.)

Fast forward to last week's visit: I've had a couple of years to mull the surgical option and am far less enamored with it than I was then. Chaya has been through the liver ordeal and several severe urinary tract infections in the interim.

So this time I pressed hard on the brakes. "Thanks, but no thanks." I told the epileptologist. "Chaya will try the CBD vapors before we subject her to any complicated surgery." Or something to that effect.

Of course, the doctor tried to convince me of its "uncomplicatedness". But I wasn't buying it this time. 

So here's hoping those vapors bring Chaya's ravaged brain some respite from the two decades of daily seizures she has endured.

Making it a round dozen

Last week, we tried out a new neurologist, one who specializes in epilepsy, aka an epileptologist. This brings our tally to roughly a dozen since, when she was three months old, we discovered that Chaya was neurologically impaired.

In the hospital waiting area

Here (right) is Chaya at the hospital while we wait to be admitted to the new doctor's office. 

We had to pay out-of-pocket because the earliest appointment with her that we were offered in the public clinic was April 2019! At a time like this, our system feels like "public medicine" only nominally. We are forced into the private domain too often.

This epileptologist gave us an hour and a half during which we covered Chaya's history, symptoms and functioning. 

Afterward the doctor conveyed her thoughts and recommendations. This probably sounds rather routine but, trust me, in our experience, it's a rarity. We really felt that we got our money's worth.

Of course, that's not to say we left her office uplifted. There was much for us to digest and ponder. So here goes.

Med changes

First, she recommended raising one of the two anti-epileptics Chaya's on, Vimpat, by 50 mg/dose. I promptly did that the following night. After two weeks, we raise it in the morning as well. She said the current dose is considered low. Who knew? (And who knew that nabbing those 50mg pills of Vimpat would be so challenging. So, beware, they are in short supply and available only in a handful of Kupat Holim pharmacies).

She also advised doing a blood test to check the level of the second drug Chaya gets, Keppra. Her current dose of that drug - 1,500 mg. twice/day - is also deemed low. Again, news to us. Our previous neurologist either was unaware of that or just kept it a secret. 

In fact, at our last visit she had recommended adding a third anti-epileptic! Frisium! That's one of the benzodiazepams that rendered Chaya semi-comatose during her hospitalization back in November! (As the exclamation points indicate, I haven't yet recovered from that nightmare.)

By the way, that incompetent neurologist never bothered to answer our last email. In it, we mentioned, inter alia, that we had not added the third med, Frisium, as she had instructed us to do. I suppose she wasn't too pleased with that.

Back to the new neurologist...

Video EEG

We've never done one and she'd like us to. So some time in the coming weeks, Chaya will be hospitalized for 24 hours. Here's hoping we glean some helpful revelations. Our Kupah has already given us a hit'hayvut for it.

Chaya's frequent fevers

New neurologist wasn't impressed with the exclusion testing that C.'s pediatrician did. As I've written, he did a thorough clinical exam and blood test before concluding that the fevers Chaya's now getting - they max at 100.6 degrees Fahrenheit rectally - are not caused by an infection. Ergo, they must be central.

New neurologist said that those exams weren't enough to reach that conclusion. She said she's seen patients whose seizures are more numerous than Chaya's but who never get central fevers. She suspects there could be some underlying condition, perhaps related to her life-long thinness, triggering the fevers. She said the pediatrician should have referred us to a specialist - she couldn't specify but tossed out endocrinologist and gastroentereologist as possibilities - who could run further tests. 

"Ouch", I thought when I heard that criticism of our ever-supportive, brilliant and kind pediatrician. But the following day, he read the new neurologist's summary with equanimity, then promptly gave us referrals for a couple more blood tests to tighten the "central fever" theory. He never ceases to amaze us.

VNS

New neurologist strongly urged having a new VNS implanted. The one Chaya sports now dates back to December 1999 and never helped her one iota. She advises trying it again. Of course, this time we'll have somebody better equipped to calibrate it afterwards. Back in the year 2000, there wasn't any such expert in this city. (I know, I know: so why did we implant it then anyway? That was just another of our many blunders.)

But removing this old one isn't easy, we've been told, because the wires are now overgrown with skin - or something along those lines. 

Also, the last neurologist to push a VNS replacement was the one who destroyed Chaya's liver with Valproic Acid and refused to own up to it. Negative associations.

Cannabis

I had braced myself for dismissiveness so I was relieved when new neurologist simply noted that Chaya's CBD dose is very high. Which would explain why the Health Ministry refused to renew our license for 11 bottles (= 100gm) per month. Our new one permits only 10 bottles/month.

She said Chaya's current dose would be more efficacious in the form of vapor which is absorbed far more quickly. I haven't gotten around to inquiring about the availability of this form at our supplier, Tikun Olam. My hunch is we'll need to switch to another supplier (the one that the doctor recommended); not a process I relish.

Hydro

Last week yielded a brief respite from frequent seizures and fevers during an extra long hydrotherapy session where Chaya truly rocked. Here she is:

Sadly, the therapy pool will be closed for the entire coming month. Wishing everybody a G'mar Hatimah Tova and an easy fast on Yom Kippur.

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.