Showing posts with label Propranolol. Show all posts
Showing posts with label Propranolol. Show all posts

Friday, March 4, 2016

Solving puzzles in the dark

C., knocked out from the latest round
of seizures today
Well, it was a partial false alarm. That is, the platelet aspect of it.

For some reason, the blood test results yesterday were perfectly normal (105 k/UL), only one day after being horrific (57 k/UL).

But the liver profiles were bad and the pediatrician was convinced that the neurologist would replace the Valproic Acid post-haste with some other anti-epileptic.

But our neurologist emailed us to make an appointment to see her (that will be light years away) and in the meantime to leave everything as is. Whew. That was a relief. The last thing I want now is to dabble with some new potent drug and its inevitable side effects.

C. has been having at least one series of intense seizures every day lasting up to 10 minutes each. Could it be still the Propranolol which we haven't given her for three days? Or does it mean that the Propranolol is definitely not the culprit and that we should consider experimenting with it again?

One thing is certain: nobody can answer these questions definitively. And so we continue our groping in the dark.

Thursday, March 3, 2016

Farewell, Propranolol. Hello, low platelets

Yesterday, I mentally composed today's post right down to the title: "Seeking Your Input". In it, I told how the Hubby and I have always been on the same page where C. is concerned. And that's no triviality given that we tend to disagree on plenty of  issues.

But, I was going to add, we now disagree on whether to continue with our Propranolol experiment. The Hubby, I mentally wrote, is convinced that C. has been more alert and focused since we began it, while I maintained that whatever improvement he's seeing is neither dramatic nor a breakthrough since she's periodically enjoyed similar states while on the cannabis.

The Hubby pointed out that even C.'s hydrotherapist noticed an improvement in her performance - independent and vigorous kicking with one of her legs.

My mental post concluded with a question for you readers: Should we continue the experiment given the possible adverse side effects of this drug? Readers, please weigh in.

But that post never made it to the keyboard.

It was rendered utterly irrelevant when the school nurse called yesterday to tell me that minutes after leaving the pool, C. had begun seizing repeatedly and intensively. She continued non-stop for over 15 minutes. The nurse said she said she'd never seen C. seize like that and it certainly sounded different to me than her usual fever-related attacks.

In the hope that it was nevertheless fever-induced, I raced over there with a bit of food so she could have Advil. Afterwards I took her temperature which, sadly,  proved to be normal.

The truth is that on the second day and third days of Propranolol, C. had two episodes of several intense seizures, though not as severe as this one.

I sort of stashed them away in the rear corners of my consciousness. Now they seemed liked pieces in the puzzle.

C. returned to herself within about fifteen minutes of the end of the attack so I left her in school until the end of the day.

Anyway, the Hubby and I are back on the same page: we've agreed to stop the Propranolol for now, even though it's unclear whether it triggered the worrisome seizures.

And then for the icing on the cake, the routine blood tests C. had done yesterday produced awful results. She had an incredibly low platelet count - so low that the lab repeated the test: 57k/UL.and somewhat elevated MCV, 105 FL and Hemaglobin, 15.60G/DL.

Several of the tests couldn't be executed because, as the lab put it "there wasn't enough material". Neither the pediatrician nor the nurse know what that means. But everyone suspects it could be the code for "oops, we lost some of your daughter's blood".

The lab actually called our pediatrician last night to alert him which they only do when results are majorly alarming.

We've had the tests repeated today and are hoping that the results will be better. The pediatrician suspects that the Valproic Acid could be the culprit.

Just to add to the confusion, C.'s teacher just told me today that, on Monday, she noticed an improvement in her alertness and interaction. So another point for Propranolol.

Here's a confession but keep it to yourself:  I'm actually, perversely, half-hoping that C. has a second whopping seizure attack without Propranolol. Then we could eliminate that drug as the trigger and safely resume the experiment.

Saturday, February 27, 2016

The experiment is underway

I can't believe how cooperative our doctors were. Not enthusiastic, not supportive, openly skeptical, but at least they gave dosage advice and the prescription.

So yesterday, C. received 10 mg. of the beta blocker Propranolol, and today 20. We go up by 10 mg. every day until we hit 40 mg. That was the dose given to the subjects [here] with high-functioning autism who showed dramatic improvement in communication and cognitive skills immediately afterwards.
"Propranolol was first reported to improve the language and sociability skills of individuals with autism in 1987,” says senior author and neurologist David Beversdorf. But the effect was never verified with a controlled trial comparing propranolol with a placebo."
This drug has been used  for decades by performers to ease anxiety and shakiness - but apparently they kept it their own little secret.

The latest study published this month in the journal Psychopharmacology was small but carefully conducted at the University of Missouri's Thompson Center for Autism and Neurodevelopmental Disorders.. 

The enhanced skills were: staying on topic, sharing information, reciprocity or shared conversation, transitions or interruptions, nonverbal communication and maintaining eye contact.