Tuesday, January 16, 2018

That pot of gold

C. gets hydrotherapy
I was thrilled with C.'s hydro session this week where she surpassed last week's performance. Here she is floating unaided (over on the right).

Her walking has also been advancing. Still nothing like what it was pre-liver saga but better than it has been since her liver recovered.

She's actually sturdily on her feet cooperating slightly while I move her legs. We do this for 45 minutes every night. It's so strenuous that Ive apparently injured my left hand in some way. For the last week, I've been waking up after about five hours of sleep with numbness and pain in my left fingers.

I unearthed a hand brace which I bought many years ago. (That's no mean feat in my chaotic household.) The exercises I was doing back then with C. triggered similar symptoms in the same hand.

Me walking C. today
I've now been wearing it during the walking and while I sleep for a couple of days with amazing results.

UPDATE: I wrote all that a few days ago but things aren't looking so rosy now. We get periods of intense and repeated seizures for which I give either Advil or 20 drops of Cannabis THC, or both. We're also treated periodically to those tiny eye seizures that lock her trembling eyeballs into the left side. The latter aren't as visually alarming as the whoppers but they're still very disconcerting. Needless to say, she doesn't function at her peak while in their grip which can be for over an hour.

We're at the same 25 drops of Cannabis CBD, three times a day, 3 drops of Cannabis THC three times a day, 1,500 mg. of Keppra twice a day and 100 mg of Vimpat twice a day. Still haven't learned if and how we can buy that CBDA. So, for now, I am at a loss as to what changes to make.

That pot of gold - seizure control - seems more elusive than ever.

Tuesday, January 2, 2018

New year, new campaign, new drug regimen

C. in the hydro pool a week ago
Last week, C. had her first hydro session since being hospitalized. We were all blown away to see her float with her usual finesse as if she hadn't just been through a 3 week hospitalization for status epilepticus.
 
And the previous day, I gave her THC for a sudden seizure surge. That's happened a few times lately. Occasionally she has a fever so I only give her Advil to control them. But with her status experience still so fresh, each increase in seizures is unsettling. 
 
I've been busy writing about my pet peeve: institutionalization of people with disabilities. As I've shouted from the rooftops, that practice is rampant and accepted in these here parts.
 
During C.'s hospitalization, one of the doctors on the team suggested to the Hubby: "Why don't you put her in some sort of medical facility?" That was after the team had reined in her seizures with a cocktail of powerful drugs that left her near-comatose. We were wondering how we'd care for her at home in that state. The "send her away" suggestion was that doctor's response. (Here's what happened afterwards.)
 
I was encouraged to learn about a new local grass-roots movement against institutionalization. Its specific goal is to win government-funded personal aides for people with disabilities along with the right to live wherever they choose to within the community. Exactly what I've been hankering for! Our national center for human rights for people with disabilities is promoting the campaign.
 
A creative approach to achieving that is to dissuade those benevolent people who volunteer at and donate to such institutions from doing so. Lumos - founded by J.K. Rowling - is at the forefront:of that push.

Here is what Georgette Mulheir, Chief Executive of Lumos had to say about that: 
"More than 80 percent of children in the world’s orphanages have at least one living parent and most have relatives. They should be at home with their families, not in institutions. What orphanage children and their parents really need is to be reunited, with all the supports and services that will enable those families - no matter how poor - to give their children what they need to thrive and reach their full potential.

J.K. Rowling, the founder of Lumos, who has spoken out against orphan voluntoursim frequently on Twitter, could not have put it better: “ Voluntourism is one of drivers of family break up in very poor countries. It incentivizes ‘orphanages’ that are run as businesses. Globally poverty is the no. 1 reason that children are institutionalized. Well-intentioned Westerners supporting orphanages perpetuate this highly damaging system and encourage the creation of more institutions as money magnets.”

Yet evidence suggests the number of children going into orphanages in some parts of the world is increasing."
Wishing everyone a happy, healthy, seizure-free and de-insitutionalized 2018!

P.S. Last night I began giving C. a daily dose of THC. For the next couple of days, it'll be just one drop 3x/day but I'm planning to raise it gradually. I'm winging this; no doctor has recommended it but Elizabeth Aquino - my cannabis guru - gives it to her Sophie with CBD.

Tuesday, December 5, 2017

No place like home

We are reveling in the pleasure of being home since Thursday evening.

It's still a godsend just not having C. supine day and night, not waiting interminably for her to open her mouth to be spoon fed, not having to beg a few drops of milk from the nurses for a cup of coffee, not fighting fatigue while driving home through torrential rain at 11:30 pm (with a cataract in one eye!) And, of course, for Hubby there's the treat of sleeping in a bed rather than a chair and for more than three hours.

Even C.'s inability to stand and walk as she previously did isn't concerning me yet. Just as she has regained her ability to raise her spoon to her mouth and feed herself, I'm hoping her other skills will follow suit.

Seizures have not been banished. They are still a daily feature and each one still whacks me in the gut. I'm just praying they remain at their current reasonable (for C., that is) number.

I'm still somewhat apoplectic over the gulf there was between the "team's" approach to C.'s drug regimen and that of the new doctor who appeared only in week three of C.'s hospitalization. Within four days, he had removed Frisium and Phenytoin - two drugs that the "team" insisted C. would go home with.

Never mind that the regimen was rendering her incapable of eating or staying awake for more than an hour at a time.

I shudder to think where C. would be if he hadn't materialized. There must be plenty of patients who never benefit from his input. He spends three weeks of each month glued to his screen, scrutinizing imaging and other data from overseas stroke patients and prescribing treatment accordingly. Salaries here just aren't enticing enough for full time employment.

Wednesday, November 29, 2017

Baby-steps

At last, C. is out of bed and able to be wheeled
around the ward

Well, this discharge is proving elusive.

Saturday was pretty disappointing with C. extremely sleepy, even lethargic. The IV fluids were discontinued in the afternoon to test her capacity for drinking and eating enough by mouth. It didn't look promising, as she clamped her mouth shut in response to the spoon and bottle.

Nightime brought the icing on the cake - copious vomiting immediately after a small meal I'd coaxed into her.

The junior neurologist ordered blood tests and a chest x-ray without delay although C. had no fever or cough. She didn't say why. But our next-door neighbor, a pulmonologist, later explained that it was a routine procedure to rule out aspiration of vomit. It would have been nice for the neurologist to note that.

I went home to sleep, consumed by guilt over her vomiting - which everyone intimated was my fault. (While the hubby stayed in the hospital as he's been doing every night. Yes, I know, he's a treasure.)

The following morning I awoke to a WhatsApp message from him that read like a hallucination:
"The resident for this coming week is Dr. J.K. He was here now with Dr. L. and Dr. M. in tow [two more junior neurologists who have been treating C. until now]. He agrees with everything you say. He's immediately taking her off Phenytoin as the first step in reducing the drug regimen and getting her out of the current apathy/lethargy. Next culprit in his eyes is Vimpat of which he says she's getting too much for her size."
C., now off Frisium and Phenytoin, has been progressing in baby steps. With my maternal magnifying glass, though, they appear as giant leaps.

For instance, she's begun opening her mouth for food. And when we wheeled her around the ward tonight for the second time, she lifted her head more frequently than she did last night.

And, of course, equally significant, the seizures are infrequent and mild, thank heavens. But you know the score: keep that one hush, hush.

This godsend of a neurologist departs the ward at the end of the week for overseas where he works over the next three weeks. He's promised to be a consultant for C.'s care via her regular neurologist - who was his student once upon a time. But it remains to be seen how that will pan out.

Saturday, November 25, 2017

A dismal discharge

We are now hopeful that C. will be released from hospital tomorrow. Well, I'm not certain "hopeful" is all that accurate given the trepidation I'm feeling about the prospect. C. will be returning home on four anti-epileptics. She left 18 days ago on one! (excluding cannabis).

She will also be returning in an extremely sleepy state and without any appetite.

What has been achieved is a halt to her Status Epilepticus. I realize I'm supposed to be grateful for that. But given the high price we've paid - the loss of every ounce of functioning she previously had - I'm finding that hard.

None of the staff dares predict whether this is a temporary phenomenon.

They are just as vague about how long they'd like her to stay on her current drug cocktail. They maintain that there's no way to ascertain which one actually did the zapping so it's risky to remove any. They say eventually her neurologist will guide us on weaning C. off most of them.

To quote myself: I'll believe it when I see it.

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.