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Tourette Syndrome—Now What?
Raising awareness about the full spectrum of Tourette's disorder, with support
and accurate information based on the latest research. TSNW •
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Tourette Syndrome Now What?
Tourette's
Syndrome Message Board and Blog!
(An online Tourette syndrome support
group where you can meet adults, families and people with Tourette's Syndrome,
keep up with the latest research, learn how to cope with Tourette's, and post
your questions about Tourette's.)
Click on the links below for recent
updates, latest research on Tourette's, and current Tourette's
information
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.
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."
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
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.
(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.)
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.
If you're looking for the Tourettes Syndrome Guy video or Tourettes Guy video
clips:
they're not here, but please stay and browse for some accurate information about
Tourette's syndrome.
Copyright 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007. All
rights reserved.
No part of this publication may be copied, re-printed, or used in any form
without my prior consent.
