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.  

Another 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 :-).  But, the 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 your gut."

2.  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 Syndrome, 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?

·         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?

3.  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 Syndrome than is warranted.

4.  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?

5.  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.

6.  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?

7.  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.

8.  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., Flint, Michigan
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

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