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Placebo, Part 2

I know my last post was incredibly long and fact filled, but I thought I’d ramble a bit more anyway about our final UCLA experience. They called it the “un-blinding” of Stink, so on that note, let the Gospel music roll in. Can you hear that organ?

“Amazing drugs, how unsweet the sound

That didn’t save a wretch like me

Enter chirps and mouth blows… healing we did not find

We were blind… and now we see… Placebo!”

Yes, for 6 weeks, I have been driving back and forth to UCLA for a fake pill. The good doctor sat with me in his office and told me, in all seriousness, that there is no way that this pill could have caused Stink to have the upswing in tics that he had. It could have been anything from the waxing and waning of tics to state testing to his loss of teeth to a possible strep infection that went untreated.

Now despite my sometimes hysterical sounding writing, I can promise you that in serious situations I can totally fake my way into seeming together. I don’t argue. I don’t get emotional. I don’t shake my fists like a furry arm pit haired hippy and blame air freshener and L.A. smog for the cause of my kid’s neck jerks. (Though truthfully, sometimes air freshener and other scents can indeed trigger tics. My point? I don’t say this at office visits at top research universities. I wear deoderant and sometimes even brush my hair.)

I didn’t push my agenda and issue with the placebo. Dr. McCracken isn’t a world renown T.S. expert for advocating alternative treatment for children. He treats from the medical/pharmaceutical end. I get it. And he has done amazing work for a lot of people. I might continue to work with him for the next 8 weeks and give the actual drug – Intuniv – a go for Stink. I wouldn’t be doing it for tics. (Though Dr. McCracken has said on at least six occasions that this drug has been known to reduce tics by 50%. Yeah!) I’d be giving this medication a go to improve Stink’s focus and impulsivity. If my smart boy can pass all his classes while dreaming of Mario and playing virtual handball during fractions, imagine what he is capable of if he could just zone in on what was being spoken about? It could be the difference between Harvard and Clown College.

Like many delicate arguments in marriage, this is one of those situations that I’m simply not going to be right about. Dr. McCracken will go on believing that the placebo could never cause an upswing in tics. I will go on knowing that the moment I took my kid off those damn pills his tics reduced by 80%. State testing being over? No longer some unknown virus in his system? Some cosmic coincidence that the moment he goes off the pills his tics reduce? I think not.

The overall message of this post: Don’t throw out amazing professionals just because they have a different opinion than you do. They might be your best allies in the future. But don’t think that you, as a parent, are wrong just because the medical community feels differently. I say this not from a place of denial – my son could obviously use some help with focus. I make the previous statement from experience and hopefully wisdom: the medical community does not know everything. They might work with the brain, but they don’t work with the soul. And somewhere, in between, we have balance.

I’ll keep you posted. You do the same for me!

PS: This in from Adelia’s last comment. I thought it worth posting here. “Before conducting human trials for drugs, pharmaceutical companies are often fully aware of many of the side effects of the products they’re testing. So, for instance, if a drug is known to cause dizziness and nausea, the drug company running the test may want the placebo to have the same side effects. And they have an explanation for this. They say the placebo should mimic the drug being tested so that the control group of the experiment will have side effects similar to the placebo group. Without that, they claim, the results of a blind study would be compromised.” (HealthierTalk.com)

* Photo from a few weeks back. Summer time is here!

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About Andrea Frazer

I'm a produced television, magazine, newspaper and national blog writer. My current project involves a book about my journey raising a son with Tourette Syndrome. In dealing with twitches and tics, I've gone from despair to acceptance to hope. Now, like the title of my book, I am Happily Ticked Off. My goal for other stressed out parents is for them to arrive in the same place with tips, tools, suport, diet tricks, supplements and more that I'll provide at my site here. Welcome to Happily Ticked Off!

4 responses »

  1. Raymond and Lisa

    I take a mothers instincts over an MD any day. Great perspective!!!!

    Reply
  2. Ever read pattersons against medical advice?

    Reply
  3. @ R and L – THanks! @ Lisa – No, haven’t read that. Should I?

    Reply
  4. Timely. Against Medical Advice was just recommended to me, and not for the first time. I feel like I’m at a place of acceptance, but I’m not sure I’m ready to read the book. So I was checking out reviews and that got me wondering about your drug trial, which of course brought me here.

    I’m glad the tics are in a wane, whatever the reason (cough, stopping placebo, cough).

    Reply

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