"I Have Tourette's but Tourette's Doesn't Have Me" ~ Oprah today.

[mzmolly]

National TV Coverage to Promote HBO/TSA Documentary,

"I Have Tourette's but Tourette's Doesn't Have Me"

TODAY: On Tuesday, November 8, Amanda, Colin and Jasper, three of the young stars of the HBO TSA documentary, “I Have Tourette’s but Tourette's Doesn’t Have Me” will appear on the Oprah Winfrey Show to talk about life with Tourette Syndrome and to promote the premiere on November 12 on HBO. Please check your local listings or the official Oprah website for the time and channel Oprah airs in your city.

The Insider filmed at the annual TSA New York Dinner Dance on November 3 as well as Amanda, Colin, Jasper, Julian, Riley, Aungeni and William additionally the next morning with on-air host Lara Spencer. The segment will air Thursday, November 10. Check your local listings or the Insider website to find when and where The Insider airs in your city.

The CBS Early Show will air a segment Friday, November 11 between 7:00 and 9:00 am ET. Dr. John Walkup, Division of Child and Adolescent Psychiatry, Johns Hopkins, with Aungeni and William and his mom Kelly were taped with co-host Hannah Storm.

Paula Zahn NOW will air Friday, November 11 at 8:00 pm ET (5:00 pm PT) on CNN. William and Colin were taped with Paula and Dr. Barbara Coffey, Director, Institute for the Study of Tourette's and Movement Disorders and Associate Professor, New York University School of Medicine, NYU Child Study Center, was also filmed for the segment.

I have a child with this condition. I've not seen the documentary, though I have ordered it. I do hope today's Oprah show is well balanced and sensitive.

Please tune in if you get the opportunity between voting and perusing DU.

:hi:

[medeak]

1. does you son have ADD as well?

just asking as my friend has been going through it...tourettes and ADD..

good news...he left for college on his own this fall.

[mzmolly]

2. It's all a matter of perspective.

;)

My child's official diagnosis is Tourette Syndrome with mild OCD. Though, I'm certain that I could get an ADHD diagnosis if I pressed for one. The part of the brain that's effected can cause an overlap of symptoms according to some researchers. Unfortunately, many of those "in the know" disagree on what is or is not related to TS.

TSA is an organization that promotes awareness. Their official stance is that there is TS alone and TS plus. TS plus is TS with other presumably associated disorders.

So as to the original question. My child does have some ADHD like symptomatology. I've not pressed for a formal diagnosis on this front for a variety of reasons however. She does not fit neatly into any diagnostic box when it comes to related issues, and many kids won't.

Interestingly enough most people outgrow the tics for all practical purposes and even can outgrow the related conditions.

Glad your friends son is doing well! That's not unusual in the least from what I gather, and long term success will be even more likely as people become aware and accepting.

:hi:

[TrogL]

4. One of the psychiatrists here

...seems to think anything within the autistic spectrum is a cause to diagnose Tourettes.

When you go to his office, the only pamphlets he has up have to do with Tourettes.

[mzmolly]

6. Really? They are supposedly two different conditions?

Depending on who you ask after further consideration. ;)

It seems many people come to their own conclusions based upon personal experience. My child is very outgoing and interactive, though I did consider aspergers at one point before she developed tics. She wasn't always as personable as she is now.

[Mr_Spock]

12. Yeah, I don't see this as a black and white issue really...

In Attwoods book(s) on Aspergers, Tourettes is mentioned as a possible complicating issue. There is a difference for sure between stimming and "tics", but some compulsive behavior of Aspergers folks goes beyond "stimming" though admittedly not usually as "involutary" as classical Tourettes. Of course it took 5 years before we could get a therapist to diagnose our daughter with Aspergers, only the people who see the child every day really know what's going on. Anyway, that is why we will never likely agree on anything as we all see our children as unique - no matter how many of these threads we post together on... :D

[mzmolly]

13. Indeed. Every child/person is different.

What we do know is that various conditions are genetic/neurological, and not so long ago the same conditions were considered an end result to "bad parenting." That's a step forward.

:hi:

[Mr_Spock]

17. Yeah, we are making progress for sure...

The difference in my children was obvious 1 second after they were born. One is so "normal" she's almost annoying in her social needs, the other is quite crippled by the Aspergers anxiety. There is no question in my mind that they were born that way. If we treated them differently, it was only a reflection of thier different personalities, nobody is going to throw that guilt trip on me. Plus, I have a fading case of Aspergers which helps tremendously - I just wish I had a parent who could have told me that I wasn't alone in my suffering. My daughter is very pleased that I understand that her entire thinking process is dominated by an extremely high level of anxiety that is just part of our normal state of being.

[mzmolly]

18. I have some books I just purchased. One deals with anxiety and says

that anxiety can be mistaken for ADHD? I haven't read it yet, but upon browsing it, that remark caught my eye.

Your child is blessed to have an understanding parent.

My child seemed "different" when she was born too. She was so in tune with everything and seemed very sensitive to sounds/moods - everything. She still has an aversion to various noises?

[Mr_Spock]

9. I believe that there are many possible associated issues with "spectrum"

"disorders". The difference between "tics" and "stimming" is quite big for some, but not for me. Some of the therapists have the Tourettes term with my Aspergers daughter, but it's not as clearly defined as someone who has severe tics and maybe few other issues...

[mzmolly]

11. I tend to agree. I think that the EXACT part of the brain effected can

obviously vary by individual. :shrug:

I've coresponded with 4 world renound researchers, NONE of the agree on what is related and what is not. :crazy:

[mzmolly]

10. See Blooms post TrogL

Apparently some researchers link autism to TS?

[Monkey see Monkey Do]

3. Have you heard of the British documentary

"John's Not Mad"?

"Filmed as a QED documentary by the BBC, John's Not Mad made a huge impact on the nation and brought the relatively unknown condition of Tourette Syndrome into the public domain. The documentary follows John Davidson, a 15 year old schoolboy from Galashiels who suffers from the most severe form of this complex neurological disorder. This fascinating and inspiring film explores the way in which John, his family and the local community deal with his extreme condition."

It came out on DVD last year (along with a commentary by John & a follow up documentary filmed in 2002), though if you wanted to import it you'd need to be sure you can play PAL format DVDs. He's now associated with the charity "Tourette Scotland" - http://www.tourettescotland.org/

[mzmolly]

5. I've not heard of that thanks. Most people with TS don't have coprolalia

(swearing tics) but I can imagine that makes things much more difficult from a public understanding perspective.

I'll check out the link thanks! :hi: Raising awareness is a good thing. So glad that the BBC is also taking part in educating the public.

[bloom]

7. I was noticing some of the connections

that people were making and it reminded me of this:

Mutant gene linked to obsessive compulsive disorder

October 27, 2003

Analysis of DNA samples from patients with obsessive compulsive disorder (OCD) and related illnesses suggests that these neuropsychiatric disorders affecting mood and behavior are associated with an uncommon mutant, malfunctioning gene that leads to faulty transporter function and regulation. Norio Ozaki, M.D., Ph.D., and colleagues in the collaborative study explain their findings in the October 23 "Molecular Psychiatry"....

Psychiatric interviews of the patients' families revealed that 6 of the 7 individuals with the mutation had obsessive compulsive disorder or OC personality disorder and some also had anorexia nervosa (AN), Asperger's syndrome (AS), social phobia, tic disorder, and alcohol or other substance abuse/dependence. Researchers found an unusual cluster of obsessive compulsive disorder, AN, and AS/autism, disorders together with the mutation in approximately one percent of individuals with obsessive compulsive disorder.

http://www.brightsurf.com/news/oct_03/NIMH_news_102703.php

There seem to be several members of my family who have something or other related to the things mentioned. I don't know if this seems helpful or not - but I figured I would throw it out there in case you're interested.

[mzmolly]

8. OCD is related. And, most girls with the gene will develop OCD

and boys will develop the TS symptoms supposedly. They feel that hormones play a role in expression of the gene(s) involved?

TS and OCD are also triggered by some illness like strep they are finding in recent years? It's a very puzzling/complex condition to be sure.

PS thanks for the link. As I said above, researchers differ. Some link everything but the kitchen sink to TS others, only OCD. It's interesting to consider the possibilities, though I wonder what they'd find if they examined every family for said conditions KWIM?

TS is hard to miss, but OCD and aspergers and alcoholism are likely more prevalent then we know.

[bloom]

15. Here's something more current:

Flip-Flopped Chromosome Reveals a First Clue to Tourette Syndrome

October 14, 2005

Researchers have identified the first gene mutation associated with Tourette syndrome–opening a new avenue for understanding the complex disorder that causes muscle and vocal tics.

Until now, causes of Tourette syndrome (TS), which afflicts as many as 1 in 100 people, have eluded researchers because the disease appears to be caused by subtle mutations in many genes.

The researchers published their findings in the October 14, 2005, issue of the journal Science. Matthew W. State of the Yale University School of Medicine was senior author of the paper. His research was supported by a Howard Hughes Medical Institute institutional award to Yale that was used to support early research by promising scientists at Yale.

Other co-authors at Yale included HHMI investigator Richard P. Lifton, and neurobiologists Nenad Sestan and Angeliki Louvi from the Yale Child Study Center. The Yale scientists collaborated with researchers from the University of California San Diego, Harvard Medical School, University of Missouri-Kansas City, University of Alabama at Birmingham, Johns Hopkins University School of Medicine and Cincinnati Children’s Hospital Medical Center.

According to State, early theories suggesting that a single gene mutation causes TS have proven incorrect. “There has been an evolving hypothesis about Tourette syndrome being a much more complex disorder,” State said. “I think there is general consensus at this point that there are likely to be multiple genes, likely interacting, and probably different sets of genes in different people, that contribute to TS.” The notion of multiple genes is borne out by the complex phenotype of the syndrome, which is often associated with obsessive-compulsive disorder, attention deficit hyperactivity disorder, or depression, said State....


http://www.brightsurf.com/news/headlines/view.article.php?ArticleID=21398
------

I agree with your last note. I hadn't really been considering the OCD or OCPD angle (for my daughter) - but once I got to looking into it - it made a lot of sense. And having it be gene-related also.

[mzmolly]

16. I saw that! Isn't that interesting?!

...“There has been an evolving hypothesis about Tourette syndrome being a much more complex disorder,” State said. “I think there is general consensus at this point that there are likely to be multiple genes, likely interacting, and probably different sets of genes in different people, that contribute to TS.” The notion of multiple genes is borne out by the complex phenotype of the syndrome, which is often associated with obsessive-compulsive disorder, attention deficit hyperactivity disorder, or depression ...

This could explain why it "presents" with different co-morbids (if any) among different persons as well.

[Mr_Spock]

14. Hmmm, that would kind of explain how it runs in families...

And how I have a daughter who is 110% "normal" and one who has Aspergers and "the worst case of ADHD I've ever seen in a girl - she has tremors even after taking Ritalin". Poor kid got the Aspergers gene from me :D

[mzmolly]

19. The show is about more than TS, but hopefully it will be worth watching?

:crazy: