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Dr. Phil on Tourette Syndrome

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                             Dr. Phil on Tourette's Syndrome
(What is the current usefulness of SPECT imaging in neuropsychiatric disorders,
such as Tourette's syndrome or Asperger's syndrome?)

Dr. Phil (Phillip Calvin McGraw) ran a segment on his January 17, 2006 television show titled Extreme Disorders, about Tourette's syndrome and Asperger's.  His guests representing Tourette's -- Craig (with TS), accompanied by his fiancée Amy -- were composed, gracious, personable, charming, well-spoken and humorous.  They could not have represented people with Tourette's better, both in character and in their responses to leading questions (that sometimes came across as negative and baiting) about life with severe tics and coprolalia.

But, Dr. Phil  repeatedly referred to both conditions (Tourette's and Aspergers) as extreme.  He never mentioned that most people with Tourette Syndrome have mild symptoms, or that severe Tourette's disorder in adulthood is rare.  Dr. Phil constantly turned his conversation to more sensationalized aspects and severe symptoms of both conditions (repeatedly emphasizing extreme anger and violence in Asperger's syndrome, and coprolalia in Tourette Syndrome -- never noting that it occurs in a small minority of persons with Tourette's).  Craig and Amy saved the day, with their calm and compassionate demeanor and responses.

The segment on Asperger's syndrome was particularly discouraging, because it involved issues that went beyond the actual diagnosis of Asperger's (ineffective parenting, marital problems, and possibly unmentioned diagnoses).  It linked Asperger's to extremely violent behaviors, and talked about parents hating their son and wanting him out of the family.  It showed video clips of parents behaving abusively towards their son -- I always wonder, if parents behave that way when on camera, how do they treat the boy off camera?  The boy had remarkably more insight into his family dynamic than either of the parents.

As the first (Asperger's) segment approached its conclusion, we found what the show was really about --  the upshot was brain scans, or brain imaging (SPECT) as a diagnostic technique and a means of informing treatment for Asperger's and Tourette's syndrome!  Dr. Phil appears to leave the parents of the boy with Asperger's the impression that a diagnostic brain scan will be the beginning of the road to correct treatment for their son !   His mom gets teary-eyed when Dr. Phil mentions that they're going to get a brain scan for her son, so they can find out "exactly what's going on."

In spite of his guest doctor's (a Dr. Hipskind - a name never encountered in Tourette's research) more measured answer about how well established this technology is for diagnostic purposes, Dr. Phil implies that interpretation of SPECT results has reached a level of being useful in diagnosis and treatment of DSM conditions.  He even states that it is a "mainstream thing."   Dr. Hipskind's website doesn't claim he can diagnose Tourette's, or make treatment decisions, based on a brain scan, but Dr. Phil leads us (and the parents of the boy with Asperger's) down that path.

Dr. Hipskind's website, promoted on the Dr. Phil show and webpage, is about SPECT imaging (Single Photon Emission Computed Tomography).  SPECT is a brain imaging technique which evaluates brain activity by tracing blood flow through various regions of the brain.   In some DSM conditions, it is currently useful as a research tool, for observation of the brain's activity in groups of people with a common condition or disorder, and identification of areas of the brain which are and are not functioning properly within that group, and relative to "normal" controls.  Is the understanding of SPECT information to a point that it can be useful in practice for diagnosing and treating individuals?  The answer for Tourette's syndrome, is "not yet."

Better yet, Hipskind knows that, and if Dr. Phil didn't know it, he should have.   In a 2005 article, Brain Imaging and Child and Adolescent Psychiatry With Special Emphasis On SPECT, the American Psychiatric Association concluded that, not only was brain imaging not yet useful for diagnostic purposed, but it may even be dangerous:

"...  the use of brain imaging to study psychiatric disorders is still considered a research tool. ... Imaging research cannot yet be used to diagnose psychiatric illness and may not be useful in clinical practice for a number of years. ... Specifically, no published investigation in the field has determined that any structural or functional brain abnormality is specific to a single psychiatric disorder. Additionally, imaging studies examine groups of patients and groups of healthy controls; therefore, findings may not apply to all individuals with a given disorder. Even when significant differences are identified between groups, there is a substantial overlap among individuals in both groups.  Particular caveats are indicated with regard to brain imaging involving radioactive nucleotides for children and adolescents because of children’s known greater sensitivity to radiation and risk of radiation induced-cancer. The long term risks of initial and repeated exposure to intravenous radio nucleotides are unknown. We conclude that, at the present time, the available evidence does not support the use brain imaging for clinical diagnosis or treatment of psychiatric disorders in children and adolescents."

S. Gregory Hipskind responded to that article, saying, "it was never the position of any of us working with SPECT in children or adolescents that it's perfusion information should be considered 'diagnostic' per se". 

According to his website (http://brainmattersinc.com/uploads/intake_packet_august.pdf) and his bio, S. Gregory Hipskind, M.D. "trained with Dr. Daniel Amen ... and ... has been instrumental in the establishment and use of brain SPECT imaging at St Joseph Hospital in Bellingham for ADHD and related disorders."  Here is an article from Quackwatch.org,  A Skeptical View of SPECT Scans, which explains some of the controversy surrounding the work of Daniel Amen, M.D. and the use of brain scans for diagnostic purposes in ADHD.  The article raises concerns about the safety of SPECT for these purposes. 

Here is an easy-to-understand explanation of the limitations of brain (SPECT) imaging from a lecture by Russell Barkley, an ADHD expert and posted at SchwabLearning.org:

HOST: What is your knowledge and opinion of the SPECT scan for AD/HD diagnosis?

DR. BARKLEY: Well, first of all, let’s start with the fact that on SPECT scans, when you study groups of people with AD/HD, you are able to show that the group of AD/HD individuals show somewhat less blood flow to those regions of the brain that I mentioned to you on that slide, so that SPECT scans can be useful research tools for studying groups of people. Note the emphasis on the word group. What clinicians do, on the other hand, is they diagnose individuals. They classify cases. That is a very different enterprise. And therefore you could take a test that is useful for studying groups and find that it is useless for classifying the people in the group. At this point in time there is no evidence that SPECT scans can be used for accurate diagnosis of AD/HD. There are a couple of people on the lecture circuit who will tell you that based on their clinical experience that this is possible. But these people have not published their findings in peer-reviewed journals and subjected their claims to good scientific review. And until they do, their claims should be viewed as skeptical as any other claims being made by somebody who’s promoting a particular point of view.

So at this point SPECT scanning would not be useful in any way. It would be a waste of money, in fact, for the diagnostic workup of somebody with AD/HD because we don’t have norms for SPECT scanning and we cannot tell on the SPECT scan whether or not your SPECT scan is particularly abnormal unless it’s grossly abnormal, and we certainly can’t use it for subtyping your AD/HD and predicting your response to treatment because there is zero, not a single study anywhere in the literature, on the use of SPECT scanning for subtyping and the prediction of treatment response in people with AD/HD. At this point it remains an unproven assertion, but I know that there are some people out here who I will not mention who love to do this. So at this point it’s a useful research tool. We’re actually doing some research with SPECT scanning ourselves at the moment, but I would never recommend it for diagnostic purposes.

The same explanation applies to Tourette's syndrome.   Brain imaging techniques have identified differences in brain volumes between groups of patients with Tourette's syndrome and "normal" controls, but this technology currently is not useful for diagnosing and treating individuals with Tourette's syndrome.  And, there is no medication or treatment targeted at coprolalia (Craig's most troubling symptom), even if the brain imaging information was useful.

Tourette's syndrome received a more favorable portrayal than Asperger's, but the credit for this doesn't go to Dr. Phil, who repetitiously emphasized the severity of Craig's coprolalia and led questioning in negative directions.  Fortunately, Craig and Amy didn't cooperate in Dr. Phil's apparent plan to paint Tourette's with one color:  they were excellent spokespersons for the condition, and all-round delightful people.  Craig, by his calm presence and demeanor and apparent good character and integrity; and Amy as his charming and personable fiancée, conveyed that ... yep .. they were better than regular folks ... they were great people, and a really nice couple!  This, quite simply, spoke for itself and potentially undid any damage that this show may do.   I couldn't help but note that the Tourette's community had been well served by Craig and Amy, while the Asperger's community didn't have the benefit of having a spokesperson who could stand up to Dr. Phil.

"The Internet has given voice to the masses in ways that will require greater vigilance by those who presume to speak with both authority and accuracy."  Kathryn A. Taubert, former Tourette Syndrome Association national board member, Dr. Laura Does It Again, ABCNews.com, Wired Women, June 13, 2001.   No longer available online at abcnews.go.com/sections/scitech/WiredWomen/wiredwomen010613.html

Now, to the damage that was done:  never mind that most people with Tourette's syndrome don't have coprolalia, that Tourette's can't be diagnosed in practice with information from a brain scan, and treatment cannot yet be guided by brain imaging.  Worse is that Dr. Phil appears to either be determined to present less-than-complete and accurate information about Tourette's syndrome, its diagnosis and its treatment, or simply has not got a very thorough research staff.  Surely, they could have located the National Tourette Syndrome Association as a credible source of information about the condition?  Instead, Dr. Phil refers viewers to his website for more information about Tourette's, where he quotes the controversial David Comings.

According to Dr. Phil's webpage about Tourette's syndrome:

"Recognize the Symptoms:

bulletRapid eye blinking, facial grimacing
bulletHead jerking, crotch touching, or other muscle tics
bulletThroat clearing, barking, sniffing
bulletSqueaking, or other kinds of repeated vocal noises

{ed note: THE FOLLOWING ARE NOT SYMPTOMS OF TOURETTE'S}
bulletShort attention span. Hyperactivity
bulletLearning disabilities or dyslexia
bulletBehavioral problems
bulletShort temper, confrontational and oppositional defiance
bulletUnable to take no for an answer, tantrums over nothing
bulletA lot of phobias
bulletAnxiety attacks
bulletDepression
bulletInappropriate sexual behavior
 
— From Tourette Syndrome and Human Behavior by David Comings,  Hope Press "

Hope Press is the vanity press founded by David Comings, MD, which allowed him to self-publish and market his views after he encountered opposition from peers and in peer-reviewed journals.    

The  diagnostic criteria for Tourette's disorder do not include the symptoms listed by Dr. Phil and David Comings, MD.  The symptoms of Tourette's are motor and vocal tics, which may sometimes be accompanied by obsessions or compulsions.   Attention-Deficit/Hyperactivity Disorder and Obsessive-Compulsive Disorder (OCD) are conditions associated with Tourette's, but they are not necessary for the diagnosis, and not all persons with Tourette's will have these symptoms.  David Comings' list includes some symptoms of other conditions, which may occur along with tics in some individuals, but are not widely believed to be associated with Tourette's.  Dr. Phil could have offered on his website a link to an official source of information about Tourette's syndrome, such as the Tourette Syndrome Association.  One might question why he chose to include a controversial definition from David Comings, MD., rather than provide less sensationalized information about the condition to his viewing audience.  Sensationalism sells?

Some of the issues with Comings' published work on Tourette's:

"In a remarkable series of papers by Comings and Comings in the Journal, a number of claims are made that have profound implications for future research on Gilles de la Tourette syndrome (TS).  Their assertions fall outside of the mainstream of the very extensive TS literature that has developed over the past 2 decades. The novelty of the conclusions and the visibility of their presentation require that the papers receive thorough discussion."

{followed by a lengthy discussion of methodological problems with Comings' work}

"He concludes that it has not escaped his attention that the reason disorders of disinhibition are so common 'is that they are (1) genetic, (2) dominant, and (3) result in disinhibition, especially of sexual activity.'  Aspects of this statement are unfounded, particularly his comment concerning sexual activity.  In the first six reports in the series, the authors present no data to demonstrate that individuals with TS are sexually disinhibited in a way that would result in increased frequency of the disorder. Specifically, they do not provide any family data to show that TS patients have larger than average family sizes.  In fact, data presented in these papers suggest that the TS patients' sexual activity is not different from that of controls.  To attach such a label to individuals who have already suffered tremendously because of their illness is at best insensitive; to do so without having any data to substantiate the claim is inexcusable.

In summary, any one of these methodological difficulties is sufficient to weaken considerably the conclusions offered by Comings and Comings. All of them together make it impossible to accept as valid any of the results presented and raise serious concerns regarding the integrity of the peer review process for these papers."   
Pauls DL, Cohen DJ, Kidd KK, Leckman JF.  Tourette syndrome and neuropsychiatric disorders: is there a genetic relationship?  Am J Hum Genetics, 1988 Aug;43(2):206-17.

Craig and Amy really saved the day (kudos!!), but Dr. Phil nonetheless has furthered an inaccurate description of the symptoms and diagnosis of Tourette Syndrome, and left viewers with impressions about brain imaging which are bound to disappoint, or cost parents poorly-spent money on a technology that is not there yet.  SPECT imaging typically runs about $3,000 and is not covered by insurance for diagnostic purposes, since it's not a proven methodology.   But what the heck -- Craig and Amy are going to get some expensive, cool color pictures of his brain as a souvenir for a wedding gift !! 

Other comments on Dr. Phil's Extreme Disorders

According to Special Children at About.com, the "description of the Dr. Phil segment sounds alarmingly alarmist ... to ensure maximum parental panic."

Autism Organizations respond in an open letter to CBS and Dr. Phil McGraw

Dr. Phil on other DSM conditions

Response from CHADD:  Dr. Phil on AD/HD, Major Blunders, Some Positives
"CHADD watched the program and responded to Dr. Phil with concern about many of his non-scientific recommendations."

Misinformation about OCD,  from the OC Foundation, Ask the Experts:
"Dr Phil needs to catch up with current practice. Systematic desensitization is a method that was developed many years ago for treatment of phobias and it has been tried but not found to be highly effective for OCD."

NAMI Blasts Dr. Phil,  from the National Alliance for the Mentally Ill:
"Dr. Phil’s conduct is serious enough to warrant investigation by a relevant board of licensure."  NAMI's letter to CBS

Dr. Phil on other issues
Project Race:  from the Executive Director
Scarborough - Natalie Holloway and Diet lawsuits
Families Together:  The Dangers of Dr. Phil
Tin Gods:  Dr. Phil and Dr. Laura

How can you help spread accurate information about Tourette's syndrome ?

e-mail Dr. Phil
Honey, flies, vinegar, and all that.  No matter what you think of Dr. Phil, our responses represent Tourette's.

Better yet, write:

Dr. Phil show
5482 Wilshire Boulevard #1902
Los Angeles, CA 90036

e-mail the TSA, asking them to issue a news release correcting the misinformation implied in the show, particularly the notion that brain imaging can be used for diagnosis and treatment.   In the TS online forums, we're going to start seeing posts saying, "I heard I could cure my coprolalia by getting a brain SPECT," and, even though the fallacy is self-evident to us, we're going to need an official answer to that. 

Dr. Phil is now in the company of others who have made irresponsible representations of Tourette's syndrome in the media, like "Dr. Laura" on Tourette's Syndrome, Touched by An Angel, and Ally McBeal.   

For now, excerpts and pictures are on Dr. Phils' website, but since he sells transcripts, I don't know how long they'll stay up.  Message board discussion here.

Click here to return to Tourette Syndrome - Now What? homepage

 

(Just a note:  this website was designed for newcomers to Tourette's syndrome, to be read through in page order. 
You can browse the pages in the order you desire, but if you're new to Tourette syndrome,
you may get a better overview by reading through the pages in order, by clicking on the Next Page links throughout.)

  Strengths and advantages associated with Tourette's syndrome
Medical literature supports the common lore that children with Tourette syndrome have uncommon gifts.

Growing up with Tourette's Syndrome:  Information for Kids
A new website about Tourette syndrome, with information targeted to ages 5–8, ages 9–13, and a section for parents.

HBO Documentary on Tourette's Syndrome   
I Have Tourette's but Tourette's Doesn't Have Me
Video clips of Tourette's syndrome HBO Documentary
   

First Five Things to Do After Your Child Is Diagnosed with Tourette Syndrome
I may not agree with all of them, but # 1 is interesting.

 Tourette Syndrome Research Article Summary

  Controversy, myth, and inaccurate information about Tourette syndrome
 Dr. Phil on Tourette's syndrome and Asperger's syndrome:  "Extreme Disorders" and brain imaging 
  Dr. Laura Schlessinger on Tourette's  
David Comings, M.D. - Hope Press - The Gene Bomb

Inaccurate definition of Tourette's Syndrome by Joseph Jankovic, M.D. in the New England Journal of Medicine
Deep Brain Stimulation, Tourette's Syndrome, and "Miracle Workers"
    
Disclaimer - Just a Mom !
I am not a medical person and am not qualified to give medical advice.
Please discuss your treatment with your personal physician.
PLEASE NOTE:  I am NOT affiliated with another Tourette's website which uses the tourettenowwhat name!
(Imitation is the sincerest form of flattery?  Or another webmaster trick to derive traffic from my name?)


A word about spelling

The official name of the condition, according to the DSM-IV-TR, 307.23, is Tourette's disorder. 
Tourette's is also referred to as TS, Tourette Syndrome, Tourette's syndrome, GTS, and Gilles de la Tourette's Syndrome.
Common misspellings are tourettes syndrome, tourretts, tourrettes, touretts, terrets, terets, turettes, turetts, turets, turetes and turrets syndrom.
Tourette's disease is a common misnomer (it's not a disease).
Tick is a common misspelling:  ticks are nasty critters that suck blood from dogs and people.  People with Tourette's disorder have tics.

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Dr. Laura on Tourette's Syndrome    |   David E. Comings, Tourette's and Hope Press     |    NEJM - Jankovic article on Tourette's Syndrome

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