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TOURETTE'S SYNDROME DOCTORS
Professionals treating Tourette's syndrome include neurologists, psychiatrists, pediatricians, developmental pediatricians, and psychologists. A Tourette's specialist isn't always necessary, but finding a physician or therapist who is well versed in Tourette Syndrome can be a challenge. Many a family has been derailed by the wrong medical treatment. While some persons have success finding a neurologist with training in Tourette's, others have found much better help with psychiatrists. A particular neurologist may have specialized in one area (for example, Parkinson's or epilepsy), Tourette's or other movement disorders may not be his or her main area of specialty, and s/he may have very little actual training in or understanding of Tourette's syndrome. Psychiatrists may be more familiar with associated conditions such as ADHD, OCD, bipolar, developmental delays, etcetera, and may be more familiar with treating Tourette's syndrome, as well as these associated conditions and/or behavioral issues. Other types of physicians who may treat Tourette's disorder are movement disorder specialists and developmental pediatricians.
You must also consider what your health insurance plan will cover, as many plans cover psychiatrists at a lower rate than neurologists. However, you may find that paying the psychiatrist is worth the difference. For some (like us), working with your pediatrician or a good psychotherapist may be all that is needed.
Don't assume that any particular "specialty" means that the physician is familiar with Tourette's, and ask lots of questions. Also, keep in mind that the diagnosis of Tourette syndrome is based on history: there are no medical tests which confirm its presence, but a responsible clinician will be sure to order the medical tests needed to rule out any of the several medical conditions that could also lead to tics before confirming the diagnosis of Tourette's Syndrome. It is important that the treating professional TRULY be knowledgeable about TS/OCD or - in the event that he or she is not - willing to learn quickly and help you find the treatment approaches that will work best for you.
Because it can be so hard to find a physician experienced in treating Tourette's, it is important to inform yourself about some of the basic research and issues, seek guidance from others who have "been there, done that," and to "trust your gut" when evaluating which physician you will ultimately feel comfortable with. When evaluating a physician you must be aware of the extreme amount of misinformation and misperceptions about Tourette's that exist in the literature, and the bias that you may encounter from physicians who are principally engaged in research and may most often see only the "worst-case scenario."
The help of a therapist made a pronounced difference in our son's prognosis, after our dismal experiences with one neurologist and two psychiatrists. The neurologist, in this case, was really an epilepsy expert with little Tourette's knowledge, and the psychiatrists wanted to start medication, which was not necessary in our case. None of them seemed to be aware of current thinking or research about Tourette Syndrome, as each of them made numerous, grossly inaccurate statements about Tourette's. Since I had gone online to seek guidance from other parents, our sons benefited by not being derailed by the inappropriate use of medication or unnecessary classroom accommodations that might have singled them out as "different." The help of others in sorting out which issues were really causing us trouble was invaluable. We were able to recognize that the tics were just not an issue, while my younger son’s trauma-related depression was. In other cases, comorbid ADHD or OCD or other diagnoses might be having a larger impact than the tics, and you may need to seek out someone experienced in treating those comorbid diagnoses, and/or sorting them out from other diagnoses such as mood disorders and autism spectrum diagnoses. Our therapist was also aware of the techniques of cognitive-behavioral therapy, such as described in the manual of Tamar Chansky's book on OCD in children and adolescents (see TS Books page). I must stress that my son's therapist was not initially what I would consider a Tourette's expert, but her willingness to learn along with us was the key factor in her/our success. If you aren't fortunate enough to live near a recognized Tourette Syndrome expert, then trusting your gut and finding a Dr. who will read the current research, attend scientific or medical conferences, and work with you will be key.
Your local Tourette Syndrome Association chapter, Tourette Syndrome Foundation, or Tourette's support group may maintain a list of physicians in your area. However, you must be aware that being on the list only means that the physician has met a minimum screening requirement and implies no other endorsement or recommendation. Basically, anyone who applies can be listed. Local TSA chapter leaders could risk a legal liability if they were to tell you the negatives about some doctors or attempt to remove a doctor from their list. So, it is important to talk quietly to local contacts in the Tourette Syndrome community to get a good, confidential sampling of opinions about local doctors. Another option is to go the various online forums and ask for recommendations. However, do not assume that a physician is right for you just because their name appears on a Tourette Syndrome Association list: inclusion on the TSA's list isn't necessarily the best way to measure a physician, and not all of them are highly regarded by all laypersons in the Tourette Syndrome community. Some of them are heavily involved in research and might not be the best fit for your family. It is recommended that you try to get referrals from people whose symptoms are more in common with the symptoms you or your child are experiencing.
The list of suggested questions below is to give you a start towards initiating conversation as you interview doctors and/or psychotherapists.
1. Getting the initial appointment for a Tourette's evaluation is one place where some get off on the wrong foot. Often, the best physicians have very long wait lists (up to several months or more). Try to avoid the very common mistake of passing up an appointment with a recognized expert in the field because he or she has a long wait list, in favor of someone who agrees to see you sooner but may have less experience or doesn’t come as highly recommended. You may waste your time and money by seeing the less experienced professional, and just end up back on the wait list of the more experienced one. Some of the best Tourette's physicians are also teaching doctors and may also have a number of residents working within their group or practice. Seeing one of those residents may mean that the teaching doctor is following the case closely, even if you can't get an appointment directly with him or her.
advisory note to new parents: You may feel
that your child is in crisis and needs an immediate appointment (we certainly
did, although with hindsight, I can see that we were overly panicked :-).
physician who sees a lot of patients with Tourette's may not be convinced that a crisis actually
exists, as Tourette Syndrome is not a degenerative condition, and there is not always a need to
rush to evaluate. Of course, it can be very hard, if not impossible, for a parent in
the throes of seeking a diagnosis to understand that "it will be
OK." If you feel that there is a genuine crisis, you may need to
document that to the professional; for instance, via sending a fax or asking
your child’s pediatrician or school to phone the treating professional.
Asking other parents of a child with Tourette's if your crisis requires immediate
intervention and whether it is worth it to wait for an appointment with a
particular professional may help to guide you further, but always "trust
Because it can be so hard to find a professional experienced with Tourette's, you
must determine the level of experience the treating professional has with Tourette
OCD, and whatever other diagnoses may be present.
If a physician doesn’t have ample experience, that’s not necessarily
a bad thing, as long as he or she is willing to learn and come up to speed as
quickly as possible. Trust your gut
instinct. Some of the questions
which may help you explore this include:
How many patients
with Tourette's have you treated? How many
are you currently treating? How
many do you see per month?
If interviewing a
neurologist, you might want to ask what their specialty is.
Some neurologists may specialize, for instance, in epilepsy and have very
little background in movement disorders. Try
to determine if the specialist has experience in the issues which may be
presenting for your child, whether Tourette's, OCD, ADHD, “rage,” etcetera.
Look around the
office for literature and/or books. If
there is nothing about Tourette Syndome, but plenty about, for instance, epilepsy, then
further questioning about the physician’s specialty may be in order.
Try to determine
if the professional stays current. Is
he or she a member of the TSA or the equivalent in their country?
Do they receive the TSA medical newsletters and updates?
If OCD is an issue, are they a member of the OCF and do they receive OCD
literature? Does he or she attend
professional, scientific, or medical conferences on TS or OCD?
How much involvement does he or she have in the TS/OCD community?
If you question them about the criterion for a Tourette's diagnosis, are they
aware that the "significant distress" requirement was removed from the DSM-IV-TR?
If you question them about the criterion for a Tourette's diagnosis, are they aware that the "significant distress" requirement was removed from the DSM-IV-TR?
What sort of
patient materials can the professional provide to you (books, literature,
websites, etc.)? What books do they
recommend? By now, you may be
familiar enough with information on the internet to know if these appear to be
good recommendations. Are they
recommending outdated books? If so,
are they informing you that some parts of those books may be out of date?
If they don’t have current patient materials, are they referring to a
local support organization for those materials?
You will also want to determine your comfort level with the physician.
How well will they answer your questions in simple, easy-to-understand
English? Can you understand them,
and do they take time to communicate as clearly as possible and in a manner that
you are comfortable with? Do you
feel that he or she is supportive, compassionate, and that you will always be
able to reach them when needed? If
this is important to you, will they meet with you separately before meeting with
the child? Is he or she receptive
to being questioned? Again, trust
your gut. However, a warning is in
order for parents new to the diagnosis of Tourette syndrome.
You may be much more worried about the Tourette's symptoms than the physician is, if he or
she is experienced with Tourette Syndrome and does not have a head full of myths,
misperceptions, and inaccurate information about Tourette's.
A calm, or even perhaps nonchalant, attitude may not always indicate a
lack of concern, rather the voice of experience.
Again, trust your gut, but realize that you may be more alarmed about Tourette
than is warranted.
Depending on the type of professional you are interviewing, you may want
to ask about their treatment methods and orientation.
With a psychotherapist, you will need to know their approach to therapy. If he or she is very psychoanalytically oriented, is he or
she also sufficiently well-versed in the neurology of brain-based conditions?
Does the physician discuss non-pharmacological options; for instance, if
OCD is an issue, is the professional familiar with cognitive-behavioral therapy?
If several conditions are present, is the physician experienced in
sorting them out and treating that which most needs attention?
To get a good sense of whether the physician is current and educated
about the field, be sure to look at the treatment
section in Leslie Packer Ph.D.’s website.
If you feel your child is a PANDAS child, question the physician about
his/her experience in that area. Some
therapists believe in calling tics to the child's attention and
"monitoring" or charting of tics. Although research has shown
this to help reduce tics, this technique may be beneficial to some children, but
may not be for others. Do you want
tics called to your child’s attention?
How do you feel about the use of medication for Tourette's?
Any Dr. who thinks Haldol is the front-line medication for Tourette
Syndrome, or that psychostimulants (Ritalin, Concrta, Adderall) are always contraindicated for ADHD with tics, may
not be keeping up with the peer-reviewed medical journals.
Also, you must get a sense if the physician understands the importance of
sorting out which of several potential diagnoses may be actually presenting
difficulties and warranting treatment: often
ADHD, OCD or bipolar may warrant pharmacological attention, while tics may not. Find
out if he/she appreciates how hard it can be to find the right medication for
any individual, and that he/she is not sold on any particular drug for every
case and/or doesn't automatically prescribe neuroleptics.
Try to get a sense if he/she will work with you as an individual.
Try to get a sense of how the physician views the prognosis for persons
with TS. (I have a hard time
exposing my children to physicians who transmit negativity or who hold outdated,
stereotyped views of TS.) Ask
if they feel that clinical population samples in the research accurately reflect
the average person’s experience with TS and how they view the future for your
child. What does he or she think should be your biggest concern?
To understand the physician’s orientation and how up to date they are
on the research, ask if there are some particular authors whose published works
they strongly agree or disagree with. (The
list of members of the TSA Medical, Professional and Scientific Advisory Boards
on the TSA’s website will come in handy.)
He or she should be aware of some of the more recent work in the field.
Perhaps tell the physician that you have seen enough information on the
internet to be confused about some issues, and ask what they think.
Do you come into the school for consultation if I need you?
Do you have or can you put me in touch with consultants who are
specifically trained in Tourette's and can help me with school advocacy issues or
educational evaluation and testing if needed?
9. If your child has severe
ADHD or is experiencing symptoms that may be suggestive of bipolar disorder,
question the physician about how you can distinguish between ADHD and bipolar.
By looking at the websites on the TS Links/Other Links page, you can determine if the
physician is up to date in this area.
*** Here is a listing of some current and former members of the USA and Canadian Medical and Scientific Advisory Boards for Tourette's, and other well-known physicians and Tourette clinics.
Daniel T. Anbe, M.D.,
Jill B. Becker, Ph.D., University of Michigan, Ann Arbor, Michigan
Cheston M. Berlin, Jr., M.D., The Milton S. Hershey Medical Center, Pennsylvania State University
Maja Bucan, Ph.D., University of Pennsylvania, Philadelphia, Pennsylvania
Cathy Budman, M.D., North Shore University Hospital, Manhasset, Long Island, New York
S. Barak Caine, Ph.D., McLean Hospital, Harvard University, Massachusetts
F. Xavier Castellanos, M.D., National Institute of Mental Health/NIH
Barbara J. Coffey, M.D., M.S., NYU Child Study Center, New York
P. Michael Conneally, Ph.D., Indiana University Medical Center, Indianapolis
Ian Creese, Ph.D., Rutgers University, New Jersey
John G. Csernansky, M.D., Washington University in St. Louis, Missouri
Martha B. Denckla, M.D., Johns Hopkins University School of Medicine, Baltimore, Maryland
Marian DiFiglia, Ph.D., Massachusetts General Hospital, Charlestown, MA
Leon S. Dure, M.D., Children's Hospital, Birmingham, Alabama
Gerald Erenberg, M.D., The Cleveland Clinic, Ohio
Roger D. Freeman, M.D., Neuropsychiatry Clinic at British Columbia Children's Hospital, Vancouver, Canada
Kirk A. Frey, M.D., Ph.D., University of Michigan Medical Center, Ann Arbor, Michigan
Donald L. Gilbert, M.D., M.S., Cincinnati Children's Medical Hospital Center, Ohio
Joseph Jankovic, M.D., Baylor College of Medicine, Houston, Texas
Jorge J. Juncos, M.D., Emory University School of Medicine, Atlanta, Georgia
Katie Kompoliti, M.D., Rush-Presbyterian-St. Luke's Medical Center, Chicago, Illinois
Roger Kurlan, M.D., University of Rochester School of Medicine and Dentistry, New York
Anthony E. Lang, M.D., FRCPC, Toronto Western Hospital, Ontario, Canada
James F. Leckman, M.D., Yale Child Study Center, New Haven, Connecticut
Allan I. Levey, M.D., Ph.D., Emory University School of Medicine, Atlanta, Georgia
John S. March, M.D., MPH, Duke University Medical Center, Durhan, North Carolina
Carol A. Mathews, M.D., University of California San Diego (UCSD), California
James T. McCracken, M.D., UCLA Neuropsychiatric Institute, Los Angeles, California
Jonathan W. Mink, M.D., Ph.D., University of Rochester Medical Center, New York
Tanya Murphy, M.D., Ph.D., McNight Brain Institute, Gainesville, Florida
Jane S. Paulsen, Ph.D., University of Iowa, Iowa City
John Piacentini, Ph.D., University of California at Los Angeles
John P. Rice, Ph.D., Washington University School of Medicine, St. Louis, Missouri
Paul Sandor, M.D., The Toronto Western Hospital, Ontario, Canada
Lawrence Scahill, MSN, Ph.D., Yale Child Study Center, New Haven, Connecticut
Susan R. Sesack, Ph.D., University of Pittsburgh, Pennsylvania
David A. Silbersweig, M.D., New York Hospital-Cornell Medical Center, New York
Thomas J. Spencer, M.D., Massachusetts General Hospital, Boston, Massachusetts
Neal R. Swerdlow, M.D., Ph.D., University of California, San Diego
Jean-Paul Vonsattel, M.D., Columbia University-The Taub Institute, New York, New York
John T. Walkup, M.D., Johns Hopkins Hospital, Baltimore, Maryland
Douglas W. Woods, Ph.D., University of Wisconsin, Milwaukee
Steven S. Zalcman, Ph.D., Univ. of Medicine and Dentistry, New Jersey School of Medicine
Samuel H. Zinner, M.D., University of Washington School of Medicine, Seattle, Washington
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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