Phenytoin is up next

Very excited to share that my daughter C. will finally try out a new anti epileptic - one that has been found successful in a significant percentage of EIEE11 cases. 

It's the first med change we're making since her diagnosis with that syndrome three months ago. 

Aside from CBD, this addition will bring C.'s anti-epileptic tally to three. And while I loathe giving her so many at once, as the neurologist emphasized, the cardinal rule is one med change at a time. So, we'll wait until C. has settled into the therapeutic dose of phenytoin and then, the doctor promises me, we'll remove at least one of the others. 

She even asked me which I believe is less effective. I told her that's hard to judge but since Vimpat was added last and there hasn't been an improvement since, I'd like to see the back of that one. 

Truth be told, her other med, Keppra, isn't anything to write home about either.

Hoping to get the script for Phenytoin (marketed as Dilantin in some markets) tomorrow.

UPDATE

Yay, got the script and C. has taken her very first Phenytoin pill.

When I told C.'s pediatrician that this was the drug selected by the neurologist, he was surprised: "Back in prehistoric days, when I was doing my residency", he recalled, "we had only two anti-epileptics to administer, Phenobarbitol and Phenytoin. There are so many new ones on the market now."

But, I reminded him, those new ones just don't help C.

Here's some Wikipedia input:

Phenytoin was first made in 1908 by the German chemist Heinrich Biltz and found useful for seizures in 1936. It is on the World Health Organization's List of Essential Medicines, the most effective and safe medicines needed in a health system.

Hoping that stellar reputation will prove well deserved!

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.

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.

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.

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.