When Quacks Quack

Disclaimer: I’m all for holistic approaches to ailments. I’m a big fan of Dr. Weil and his work. I’m an even bigger fan of Dr. Sacks, who may not be “holistic” in the conventional sense although he is wide open to anything neurological.

That said, let me get on with this idiot who - as a doctor - manages repeatedly to write “Tourette’s Disease.” Whatever. Quack Alert

On the upside, Mr. Tauraso is right about the process of diagnosis - clear the human mechanism of all those things that might cause undesired behavior, which range from medications to foods and even to routines and environments that might induce unwanted Tourette Syndrome-like symptoms. Then start adding on one at a time to see what he reactions are, positive or negative. There’s no known cure for TS so what’s to say that a kid taking a milk break at school in between two stressful classes isn’t enough to bring on tics?  To that extent he’s right in the diagnosis but hardly right in the treatment.

On the downside, he’s all about diet. Granted, by and large all medications are “dietary” in one form or another. They are, after all, made up of the same complex natural elements found in everyday foods; it’s just that in order to get the proper effect you might need to eat, say, 3000 tomatoes a day to get the desired dosage. Not good. Hence the need for medications … for Tourette Syndrome or any other malady.

Ultimately, and what really needs to be said about the treatment of Tourette Syndrome - and I’ll leave the “need” or desire for treatment discussion for a later date - is this:

  • Tourette Syndrome takes on so many uncontrollable (and this is key) forms at so many levels that some people need a lot of treatment and some need none at all
  • Treatment might be nothing more than avoiding stressful situations and/or dealing with them with nothing more than cognitive therapy or simply breathing exercises
  • Conditions might be intermittently severe enough to warrant a combination of medications, holistic treatments, and even then only periodically/as needed
  • Some may need heavy doses of anything they can get their hands on just to get to the bathroom and back

In other words, espousing treatment by changing diet as a cure-all is irresponsible if not downright dangerous - to the patient and the doctor, for reasons that range from emotional well-being to day-to-day functioning. Diet may be part of it, but never all of it.

Tourette’s Brain Speed - “A Disorder … With Advantages”

For years now I’ve said that many skills such as language, mathematics, and sports are actually enhanced by Tourette Syndrome, not hindered. My eldest daughter, for example, was speaking in full sentences before she was one. Now, the Georgetown University has released findings in a study here in Science Central about the brain speed of those with TS. It seems (rather obviously) that those with TS (whose synapses are firing faster than those of other people) are quite normal except in scholarly testing they are faster (OK … duh).

Andrew YoungenThe subject of the article is 14 year-old Andrew Youngen, who, judging by the video in the article, is courageous, engaging, smart, and quite funny. Even particularly mature for his age. He speaks up about some particularly astute matters: don’t remind me of my tics or it will only make it worse (personally, I tic much more when I write these things than I do when I’m in stressful situations), some personal attributes are advantageous and some are not (a life lesson most adults never learned).

Of all the articles and studies I’ve run across lately, this is by far the most intelligently done. We can only hope that medical research on the matters of controlling tics (or not) will catch up.

Tic Talk - From a 10 Year-old

This is a great story and a great book. It comes out of the Kansas City area and profiles a great kid by the name of Dylan Peters. His attitude toward Tourette Syndrome is so incredibly mature it’s downright inspiring to all ages. He sat down and wrote his book, Tic Talk: Living with Tourette Syndrome: A 9-Year-Old Boy’s Story in His Own Words, at the age of, well, nine, and now is on the speaking circuit. For a 10 year-old, you’ve got to admire this kind of moxie:

Before he speaks to large crowds, Dylan says he gets a little nervous. That inspires his tics to act up.

But that’s not such a bad thing, Dylan says.

“It helps them notice the tics,” he explains. Besides, if he didn’t double-blink his eyes or clear his throat repetitively “they would wonder if I really had Tourette’s.”

Spot on.

For any speaker who has to establish his/her street cred - even something as potentially embarrassing or humiliating as TS - this isn’t just a way to go about it, it’s the way to go about it.

Dylan Peters

Entrepreneurship Beats Tourette Syndrome

Ah, two of my favorite subjects: being an entrepreneur and beating Tourette Syndrome….

Mr. Kurt Dolley of New Boston, NH, not far from Manchester (which is pretty far from everything), has battled TS and its stereotypes for years. He fought and fought - himself, those around him, his doubts - and still managed to fulfill his dream of becoming a certified massage therapist and opening his own business. It took him a couple tries but he’s finally under way.

So, if you’re up that way, stop in and treat yourself. On second thought, it would be a treat for the two of you.

Kurt Dolley

(Kurt treating his brother)

Meet Sir Twitchalot (sort of)

Recently, the writings of Eric Gaudet of Yakima, WA have been showing up in a couple forums and they’re absolutely brilliant. His condition runs from A to Z but appears to skip over coprolalia and echolalia and he and some of his family members have similar conditions.

One the one hand, our heart goes out to him. On the other hand, his vast writing is so incredibly lucid and factual - a veritable diary - that it’s worth taking the time not simply to educate oneself but to understand and gain a good old fashioned sense of compassion for Tourette’s sufferers; if it weren’t for his suffering and his courage we’d lack so much.

Perhaps this sounds a little sappy, but after swallowing the bitter pill of even acknowledging The Tourette’s Guy, bringing attention to a real Tourette’s Guy who’s candor is making a positive difference, we have to be willing to talk about - and separate - the two.

The Tourette’s Guy - R.I.P (or it couldn’t have happened to a lesser guy)

This character might have been conspicuously absent from my postings, but I didn’t want to give him the time of day. Now, however, it seems Danny, The Tourette’s Guy of YouTube fame, passed away very recently (the exact date hasn’t been released). We wish his family the best.

Danny and the producers of his pseudo-show managed to spread some of the most ignorant and mean-spirited non-humor I’ve come across in, well, ever. Widely debunked as a fake, the only good done by this strangely scripted trashy show was to get people to talk about Tourette Syndrome and get it into normal discourse. As has been said, say anything about me you want, just spell my name right.

Well, we got it. Next.

Danny, The Tourette's Guy

Tourette Syndrome and Dyslexia - Uh, No

For a while I struggled with this: what is the connection of Tourette Syndrome with Dyslexia? It turns out nothing. However, the quality of this article on Obsessive Compulsive Disorder (OCD) is impressive, and a good reference. It’s actually …

An article in Time Magazine by Jeffrey Kruger describes the difficulties that haunt a person with OCD (obsessive-compulsive disorder). He describes a man leaving work whose car bumps a pothole cover. He had seen a child on a bike: had he hit the child? The driver circles back and back and back for hours, checking everything around, before he can finally allow himself to complete the drive home.

A little anxiety is a good thing. Cavemen needed to know there was no lion near the family cave. They also needed to be able to imagine places the lion might be. “There’s a creative, ‘what if’ quality to this thinking,” says clinical psychologist Jonathan Grayson of the Anxiety and Agoraphobia Treatment Center in Bala Cynwyd, Pennsylvania. “It’s evolutionarily valuable.”

Great stuff, well written. Like I said, it has nothing to do with the site’s focus on dyslexia, but good information is worth passing on.

My Best Friend Is Special

While I’m not a fan of the title, this is a great but short piece about Ho Lee Ching (a name that’s just a heartbeat away from coprolalia) in Malaysia. It appears to have been written by a young woman with a charming outlook on Tourette’s and her friend, Ching. It’s sweet, kind, educational and inspirational. And it’s educating people in Malaysia where Ching has taken it upon herself to educate the Malaysian masses.

Ho Lee Ching

Best of all is her poem about herself and Tourette Syndrome.

It’s great to learn about people worth looking up to.

Tourette’s Syndrome Has Been Associated With Use Of Drugs Of This Type

In one way or another, every blog is a bit self-serving, but this one just seems to be a mouthpiece for the pharmaceutical industry. VYVANSE has hit some tipping point wherein Shire can now tout its widespread distribution in the US. To do said touting, they issue a press release with one of the strangest comments in it:

Aggression, new abnormal thoughts/behaviors, mania, growth suppression, worsening of motion or verbal tics, and Tourette’s syndrome have been associated with use of drugs of this type.

Typos aside, are they saying that VYVANSE can induce Tourette Syndrome? And by extension are they saying that one could create a drug that could eliminate Tourette Syndrome?

I think not. It’s just a lousy PR firm doing a lousy job. And steering clear of that blog is a healthy way of steering clear of Shire’s PR machine as well. And while you’re at it, give the FDA a few more years at someone else’s expense before giving VYVANSE a whirl against ADHD. Shoddy PR - shoddy anything - gives me pause for thought.

UPDATE: it turns out that blog does not allow comments. Hmmm….

Tourette’s Or No Tourette’s, Let’s Keep It All In Perspective

Homeschooling Kids With Tourette Syndrome … Or Not?

Home Schooling

The jury’s out on whether or not homeschooling is a great idea for a kid with TS and Homeschooling Our Tourette’s Kid is a terrific blog that puts it into practice. There are two valid sides to the argument, to home-school a kid with Tourette’s or not to home-school:

  1. Isolating a kid with TS doesn’t prepare the child for the real world that, frankly, isn’t completely ready for tics and twitches
  2. Forcing a kid with TS for the sake and sacrifice of teaching the world about Tourette Syndrome may teach people about the condition and tolerance, but this can come with great sacrifice to the child’s education and even greater risk to self-esteem

Setting aside personal reasons for living in a rural area where schools and work might create circumstances necessary for homeschooling - and my kids are in Arizona where the schools are just about the worst in the nation (48th!) despite Phoenix being a thriving metropolis … I can hardly think of a better place for homeschooling - I’m all for having my kids in public education, no matter the conditions. Not that we want the school day to be nonsensical or merely an education on how to survive bullying but we read together, play music, go to museums, do math together, church, and talk about all things educational and sports-oriented. They get a broad exposure and they have to deal with a crappy school. But if you’re involved, there’s no way a well-rounded education isn’t gotten.

Conversely, kids can be tyrannical and subjecting kind, lovely, intelligent kids to the brutal and intense ridicule that can be doled out by what might otherwise be a bunch of little gang-bangers can be a big risk. Either they survive with their wits (and TS kids are more often than not witty, intelligent and athletic) or their self-esteem hits rock bottom and will take years to recover. So, how to gamble?

If you’re not there as a parent to support your kid with TS, it doesn’t matter. If they have a little success or a big one, it’s not going to matter to you and if they get whupped at school for throat-clearing and arm-twitching, God save you … and your child.

On the other hand, if you are there, regardless of the capacity - homeschooling to PTA to just listening and offering the occasional hug - then you’re creating a survivor. In this case, get them out in the world and let them learn about winning and losing and winners and losers and see inequalities and senseless brutality in all its forms. They sure won’t understand today’s news without it. For that matter, the games they play on their XBox won’t make any sense at all.

If we’re all here for a purpose - who we are, what we do, what we look like, what we act like - then good or bad we’re a lesson for someone. And it’s wrong for us to shelter anyone because we’re taking that person out of circulation where they will do some good and sooner or later teach the world something valuable about humanity.

Still, if your purpose is to get your kid out of a crappy school system and has nothing to do with keeping them “out of harm’s way” then by God, you’ve got my blessing.

Second Strangest Seque: Paris Hilton to Tourette Syndrome

Setting aside for the moment that perhaps the most famous person for being famous actually got fan letters while in prison for acting like a idiot, Paris Hilton actually got air time with Larry King for doing so. I didn’t watch it. What I did read, however, was this very clever little piece that helps put this ridiculousness in perspective.

Paris Hilton Mugshot

Paris Hilton’s Mugshot

One of the notable bits:

Best Medical discussion:
When Larry tried to push her on why she uses Adderall, she explained it was for her ADD. (By the way, here’s the Wiki list of possible side effects - “Aggression, new abnormal thoughts/behaviors, mania, growth suppression, worsening of motion or verbal tics and Tourette’s syndrome.”)

Adderall or ADD. Either one, given its dark side, explains a lot. Or not. Given the release of SiCKO this weekend, it could be there’s nothing inherently wrong with Hilton, it’s the drugs.

Whatever. All I know is it isn’t Tourette Syndrome.

On another note, it seems Larry King has a mugshot of his own:

Larry King’s Mugshot

UCSD Professor Recipient of Tourette Syndrome Association’s Champion of Children Award

While this is a bit dated I was pleased to run across it because it stood out for all the right reasons (in no particular order):

  • The article was about honoring people working on behalf of Tourette Syndrome and children in particular
  • It was sponsored by the Tourette Syndrome Association
  • Numerous high-profile businesses were involved, most notably UBS
  • And Jennifer Love Hewitt - a singer-actress who actually has talent and integrity - stepped up to draw attention to Tourette Syndrome

Jennifer Love Hewitt

On February 16, 2006, the national Tourette Syndrome Association, Inc. (TSA) held its 9th Annual Champion of Children Awards Dinner at the Regent Beverly Wilshire Hotel in Beverly Hills, California. This year’s honorees and recipients of the TSA Champion of Children Award included Dr. Neal R. Swerdlow, past Chairman of the TSA Scientific Advisory Board and Professor of Psychiatry at the University of California San Diego School (UCSD) of Medicine; Brian Webber, Managing Director and Head of Technology Investment Banking at UBS; and actress Jennifer Love Hewitt.

Fortunately, Tourette Syndrome has its share of athletes who stand out - and up - for us. It’s good to see Hollywood doing the same.

Camp Heartland - HIV/AIDS to Tourette Syndrome

Camp Heartland got a nice writeup in the Small Business Times of Milwaukee where they cater to at-risk children ranging from HIV/AIDS to Tourette Syndrome. That’s right, Tourette’s is at risk. While those with Tourette Syndrome are often more musically inclined, artistic, have a higher IQ and generally more remarkable than their “normal” counterparts, the public humiliation of the disorder is decidedly “at risk.” Anyone who grew up with it, or is growing up with it, has to generate enormous amounts of self-esteem and otherwise clever ways of dealing with the tics and twitches in a public environment - from the classroom to the cubicle. I applaud the Camp and hope you’ll consider it for your kids as well as for your general support.

Jim Eisenreich In Miami This Weekend

A refreshing, albeit short, article about Jim Eisenreich in the Miami Herald today remembering his/their/the World Series win with the Marlins. He was a hero in the series. Kudos to Mike Phillips who wrote the article.