Thursday, November 16, 2017

Rising stress

IV Drip
Nothing uplifting to report about C.

When the hospital doctors tried stopping the IV Dormicum (aka Midazolam), she returned to Status Epilepticus with a vengeance within a couple of hours (one minute between seizures).

So she was rehooked-up immediately to the stuff.

Then today the doctor lowered the dose from 3% to 1% and before our very eyes she began seizing again. So he promptly re-raised it and the seizures disappeared. Not much of a solution.

I inquired about the longer term plan.

He told me their plan was to get her off Dormicum and replace it with an oral benzodiazepine, Frisium (aka Clobazam); raise her Keppra (aka Levetiracetam) dose; stop the Phenytoin; and continue with Vimpat (aka Lacosamide) aiming to raise it from 100 mg twice a day to 200 mg twice a day.

Can't imagine there will be much of C. left on that potent a cocktail.

At the same time he said the team is encouraging continuation of Cannabis CBD and THC.

That's all very nice (I'm referring to the cannabis green light) but there's no point in giving THC if she has already been zapped with the other stuff. How will we know whether it's worked?

And we are currently allotted such a small quantity by the government's medical cannabis agency. We'd need a lot more to administer it freely.

A quick bedside sketch
I'm giving CBD whenever she's sufficiently awake to enable me. But that's rarely.

Well, if any of you would not find the above stressful, please let me know. Because the senior neurologist who dealt with yesterday's setback told the hubby: "Your wife seems very stressed. She reminds me of my mother. I see I can't share all information with her."

Who knew senior neurologists go in for crude mansplaining?

PS: C.'s own neurologist came by today after being away all week. She offered the option of an induced coma which would entail intubation accompanied by the risk of C. never being able to breath independently again. I said thanks but no thanks.

She then warned that even C's current treatment protocol could at some point necessitate intubation. Would we agree to that? Something to ponder.

But, of course, not get stressed over. Perish the thought.

Saturday, November 11, 2017

Stuck in status - Part 3

C. and friend in her hospital bed
Written Saturday, November 11

We're still in the hospital, third day running, but no longer in the Emergency Room. Now we're in the ward.

The major seizures are nearly under control and feeding C. meals is much easier. She even seems to have a better appetite than usual.

The severe seizures do still erupt from time to time. We've also noticed some small, new sorts involving only the face or only her right arm and hand.

A neurologist came by today and promised he'd order another EEG to ascertain whether those new movements are actually seizures.

The doctors are piling on the drugs like there's no tomorrow. When I expressed concern about that, the neurologist promised that two of them will be removed as soon as she's stabilized but I'll believe that when I see it.

So C.'s drug tally now stands at: Keppra (also known as Levetiracetam and given IV while in hospital); IV Phenytoin (aka Dilantin) (to replace the IV Valium (Diazepam) which was ineffective); oral Vimpat (aka Lacosamide); Cannabis CBD (Cannabidiol); Advil (aka Ibuprofen) for her central fevers which are proliferating; and Cannabis THC (aka Tetrahydrocannabinol) for strings of seizures without fever.

As you see, the positive news is in short supply.

Stuck in status - Part 2

Doing the EEG
Written Friday, November 10 (but posted on November 11)

Well, 20 hours later we are ensconced in the ER and, true to form, the medical team is swamped. In the last eight hours not much has been done for C.

Here's the sum total of intervention thus far:
  1. An EEG (see the photo). No surprises. The usual haywire scribbles.
  2. Two rounds of Valium IV (intravenous). Result: Longer intervals between seizures and an "out" C.
  3. Keppra IV - even though she received her morning dose before we got here. No clue as to reason. Didn't bother asking.
  4. First dose of Vimpat. The neurologist intended to start her on that but she later learned that the hospital's wards had none and that the hospital pharmacy was closed. She notified us she'd give something else instead of Vimpat when I remembered having purchased some a year ago. The neurologist had first given us a prescription for it - to replace Valproic Acid - but then nixed it at the last minute. She had discovered it poses a slight risk of liver damage. Not something we needed again. But I had already bought the stuff so I stashed it away in my old-drug closet.
So I brought it from home and C. has had her first dose of Vimpat. Sometimes it pays to be a hoarder.

She's had only one meal today. The rest of the day, due to her seizures or her Valium-induced sleep, eating wasn't feasible.

Stuck in status - Part 1

Written Wednesday night, November 8 (but posted on November 11)

I have just spent three hours getting a meal into C. She takes forever to swallow the smallest mouthful. Throughout, she was having small seizures that affected her face. (That grimace in the photo is relatively new to us.) Now have put her to bed but she has begun to have really hard seizures affecting her entire body, and every five minutes or so. I am at a loss.

She had a fever a few hours ago so I gave her Advil followed by Cannabis THC and the hard seizures subsided. But now they've resumed and without any fever.

I am loathe to give her another round of THC only four hours after the last. Haven't touched the rectal Diazepam - wary of it.

Tomorrow we have an appointment with C.'s neurologist but still must get through this night. I often wonder what I did to deserve this.

Monday, November 6, 2017

Status Epilepticus strikes C.

From an online guide to administering Diazepam rectally
We are enduring rough seizure-laden days. C. has even gotten tangled in status epilepticus a couple of times. It's reached the point where a few hours' stretch without seizures is pure heaven.

This bad run began out of the blue on Friday. As usual, there is no change in her routine or in her diet we can blame.

The Cannabis THC did work this morning, zapping a particularly intense status session. But after my daughter-the-dentist reminded me of it, I asked C.'s pediatrician for a Stesolid script.

So we are now stocked with two boxes of 10 mg Diazapam rectal tubes (the equivalent of Stesolid). We haven't used the stuff in at least a decade but it seems a better option than the ER. We are braced for a fresh round of this curse.

PS: The dreaded status struck again tonight. THC took a little longer to work but eventually reined in the seizures. To inject some variety, C. has also vomited twice in the last 24 hours, raising the suspicion that there's something non-neurological underlying this mess. If there's no improvement tomorrow, we will try to do blood tests.

Monday, October 30, 2017


At the bracemaker
Last week we took C. to our local brace-maker and repairer.

The team at the wound clinic had warned us the previous day that a fresh pressure sore was about to erupt on her left foot and that the old one wasn't totally healed. They blamed her brace. I am loathe to let a day go by without standing C. up - actually, obsessive would be more precise. Since she can't stand at all without that brace, we raced to the brace guy the very next day.

The brace-guy refused make a new one until C. has been examined by an orthepedist because he suspects that the problem warrants surgery first.

But he did make a few temporary changes to her old brace and for some reason waived a fee. Previously the hubby - unaccompanied by C. and me - had brought him C.'s brace for repairs and found him to be surly. I attribute the guy's transformation to the pathetic image that C. and I present.

C.'s appointment with a "rehabilitative orthopedist" to assess her braced foot is in two weeks.

Interestingly, the spot that concerned the wound team has actually been in that state for ages and still isn't worsening even though I continue to stand her up every night.

Speaking of C.'s standing, as I've previously mentioned, it has deteriorated dramatically over the past year. Despite my obsession and hard work, she remains wobbly and can just barely take a few steps with enormous support from me.

The days when C. and I wowed the therapists with her standing and walking are a distant memory. And one I doubt will ever be a reality again.

Wednesday, October 18, 2017

Meeting the merry-go-round

This week, at the age of 22, C. finally had her first playground ride.

Not that she hasn't been to playgrounds often. Most offered.the latest, trendiest equipment. But none of them had anything C. could use. After I mentioned disability-friendly public-space equipment last month [here "A small cannabis victory and a mysterious laugh"] and in August 2016 [here: "Still plagued by pressure sores, C. graduates"], I learned that in our hometown there's a wheelchair-accessible merry-go-round.

So this week we drove twenty minutes to the huge playground behind the city's zoo. The said merry-go-round stood alone among many other state of the art gadgets for the non-disabled. I only found it after a careful search because there's no sign anywhere to point it out.

C. isn't giving anything away, as you can see in the photo but it was truly a worthwhile outing. The ride, imported from the UK, was safe, easy to use and a real novelty for her.

Yesterday C. had her first hydro session in two weeks because the therapy pool had been closed for vacation. While I couldn't be there to watch, her caregiver took dozens of photos and it was clearly a success.

Back at home I snapped C. looking particularly beautiful:
But just to emphasize the cruel capriciousness of her epilepsy, within five minutes of that shot she was in the grip of a fierce seizure.

Monday, October 9, 2017

Uplifted by Downs

Isaac Levya, actor
It's been a while since the last post but not much has happened. Still the daily 3-5 intense seizures which wear me down.

So we finally wrote to the neurologist for guidance, enquiring specifically about starting a daily dose of THC to try and tackle them. (We now thankfully have a precious new bottle of the stuff.)

She recommended that we raise the dose of Keppra by 250 mg/day. But our THC idea didn’t appeal to her. She noted that a colleague who is more knowledgeable about cannabis assured her there is no evidence that THC affects seizures in any way, notwithstanding our anecdotal evidence to the contrary.

Nevertheless, she OKed one drop of it/day maximum.

For now, we’re trying the additional Keppra, so far without success. We’ll give it 2-3 weeks and then return to the previous dose of 2,500 mg./day. Afterwards we’ll try that daily drop of THC. Not that I have any hope a micro-dose like that will help. To zap C.’s long strings of seizures, we give 17 drops.

I’ve been encountering many Downs children lately when I pick up one of my grand-daughters from kindergarten. She attends a semi inclusive kindergarten. That translates into a small group of Downs students joining her “typical” class for a couple of hours each morning. The group then returns to its segregated class for the rest of the day.

I know, I know, that’s just token inclusion and the school could do more. But it’s better than none at all.

I mention this because I’ve noted how longingly I watch the Downs kids. I envisage the rosy life we’d have if only C. had been blessed with Downs instead of the disabilities she’s lumbered with.

That’s quite a switch from the days of my pregnancies when my deepest dread was giving birth to a Downs baby. It seemed the direst scenario possible.

Live and learn.

A propos of Downs Syndrome, I just learned of a film starring a Downs actor, "Any Day Now". As usual, I’m playing catch up – the film was released back in 2012. It hasn’t aired yet on TV in these parts so I’ve only seen clips from it on YouYube. It strikes me as a gem and the many awards it’s won attest to that.

Playing alongside its stars, Alan Cumming and Garret Dillahunt, is a young actor with Downs, Isaac Levya. The film is about a gay couple in the 'seventies trying to adopt a child with Downs Syndrome and the legal battles they face along the way. In an interview [here], Dillahunt describes Levya’s professionalism and how, during filming, Levya would occasionally tell his co-actors: “Give me some quiet; I’m trying to get in character”.

He attends acting school, auditioned for the part and endearingly discusses his acting experiences here.

I live in a place where mothers are still known to abandon Downs newborns in the hospital and where some who do bring them home later institutionalize them. Success stories like Isaac Levya's are particularly uplifting in this environment.

Friday, September 8, 2017

A small cannabis victory and a mysterious laugh

Since Wednesday, I've been revelling in giving C. her full dose of CBD. That's when our cannabis provider notified us that the government's health authority granted us a new license with the increase we'd requested (more like begged for) in our monthly allotment of cannabis.

This license entitles us to take that extra bottle either as CBD or as THC. So we've got one bottle awaiting us for August which we'll take as THC. I intend to begin experimenting with a very low daily dose of THC.

Then, starting with our September batch, we'll opt for an extra bottle of CBD bringing our total to 11 per month.

It's unclear why the government officials acquiesced after initially refusing. But C.'s neurologist earnestly went to bat for us with a written complaint and a nudge to her colleague with some position in the government's cannabis section. Presumably her efforts played a role.

All this has renewed my pride in this country's trailblazing in the field of medicinal cannabis. Close to 30,000 citizens are license holders and we are slated to become a major medical cannabis exporter.

But back to C. She has been seizing several times a day without running a fever. That's why I intend to introduce daily THC, though the Hubby wants me to run it past C.'s neurologist first.

C. enjoyed two hydro sessions this week, one with me as therapist, the second in the heated therapy pool with a professional hydro-therapist.

Upon her return from that session she began to vocalize - a lot - until late that night. It resembled laughter. But the Hubby and I were creeped out by it. I was convinced she was just getting creative with her seizures. Her caregiver, E., insisted it was a positive step.

Here's a brief video of the sound so you can judge for yourselves.

Whatever it was, we've only heard it once more, two days later.

And as the summer draws to an end, here's a suggestion for those still enjoying hot weather: a disability-friendly beach equipped with special chairs that maneuver easily on sand and water. You just fly to Italy and ecco là: real "access to the sea".

A snap from the beach as captured in the NYT article:

Here's a description of the beach.

Sunday, August 20, 2017

Water and oil

I'm pleased to report that C.'s second Mommy-hydro stint far surpassed her first. She hardly crossed her legs at all which enabled her to center her body and float independently most of the session.

Looking forward to this week's session.

We are still pursuing our quest for eleven (instead of ten) bottles of Cannabis CBD along with one bottle of THC per month.

In response to our request,the government bureaucrats who supervise the issue of medical cannabis have determined that a daily log of every CBD dose administered to C. over the last year is what's missing in their lives.

The recommendations of C.'s neurologist, along with all the requisite paperwork already submitted, just didn't cut it. So we've dutifully supplied them with our log.

A hospital-based neurologist to whom we brought C. years ago now apparently occupies a position of influence over the government's medical cannabis office. Our current neurologist has solicited his intervention.

All we remember about the few visits we made to him with C. years ago is that he routinely asked us "So, what do you think?" and "What would you like to try now?" We never received a suggestion from him. For obvious reasons, we didn't stick with him for long.

Let's hope he'll be quick and obliging now.