Mastering the art of gripping and dropping

Occupational therapy sessions entered Chaya's life about two months ago.

Scheduling them isn't easy because both Elvie, her caregiver, and I want to be present and Chaya must be seizure-free. 

We've already had one fiasco - Chaya in the throes of a string of seizures when the therapist arrived. (I had called to notify her but she was already on her way). 

But her other sessions were rather productive ones. 

Over on the right is C. getting her ligaments gently stretched at the session's start to increase her range of movement.

And below is a photo of her gripping an object while our therapist, Neria, shakes her hand. She is improving at closing her hand to grasp an object and then, on demand, opening her hand to release it. 

Modest goals, but they elicit bravos from all three of us - the therapist, C.'s caregiver, Elvie and me. 

You've got to admit, we're a realistic bunch.

We had about two weeks of relative relief from seizures (i.e. about three a day) which I attributed to the rise in the night-time Vimpat dose. But here we are after raising the morning dose too and the seizures are back with a vengeance. 

We still haven't managed to check the Keppra blood levels. So maybe therein lies a solution.

The Kupat Holim (health fund) nurse tells us that test will only be available after Sukkot.

No hydro photos because the therapy pool is also closed until after the chagim (the Jewish festival season).

Finally, we are excitedly awaiting delivery of Chaya's new wheelchair on October 8.

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.

Light at the end of the wheelchair tunnel

Chaya sliding out of her current wheelchair

I am  happy to report progress this week on the wheelchair front.

For six years, Chaya has been suffering in her current one. It was the brainstorm of a physiotherapist at Chaya's old school who was the designated seating "expert". She alone selected it and all its accoutrements.

And we, never doubting her expertise, purchased everything she recommended. Trusting her title was deserved, we blindly followed her advice.

From the day it was delivered to us, Chaya has been sliding down in her seat, particularly after a seizure. Like in the photo on the right.

When my  husband is away from the house, I am forced to leave her in that uncomfortable position because I'm not allowed to lift her weight (lest I wreck my pelvic organ surgery).

The bureaucratic phase which involved an assessment at Alyn, followed by reams of paperwork that that the expert person there, other professionals and we were all required to submit to the Ministry of Health. So we are eager to finally acquire this new Italian wheelchair which promises to prevent sliding via its slight tilt backwards.

According to the importer's representative who brought a demo chair to our house, this tilt will also readjust pressure spots, thereby relieving the ones by which she is sometimes plagued. He assured us there's a good chance we'll have the new wheelchair delivered by the time my husband leaves for his brief overseas trip in November. Hoping hard.

On the swing front, no such good news. The local person we've been referred to by the overseas manufacturer is on vacation now. But an associate of his told my husband that in the past they've encountered opposition from another municipality, similar to the sort ours dished out.

The tip of her tongue sticking slightly out, as it is in this
photo from the hydro pool, is how we know when Chaya is feeling happy

Her impression was that some folks there simply don't want children with disabilities frequenting their playgrounds.

I managed to attend C.'s weekly hydrotherapy session yesterday.

Normally I'm with grandchildren at that hour so Elvie, her caregiver, is with her on her own and sends me photos and videos. But seeing it in real time is such a very uplifting experience. The pool is still the only venue in which Chaya thrives.

Yesterday she seized right before entering the pool and right afterward. But during those 35 minutes of floating, she radiated calm and contentment. We were even treated to several of her "smiles" - the tip of her tongue sticking out as the photo above shows.