Interview with the Specialists
Last December, I had the chance to sit down with the Doctors of the UCLA Childhood OCD, Anxiety and Tic Disorder Clinic. If you are like me and research every nuance about Tourette Syndrome, you will recognize the names. Dr. John Piacentini, Dr. Erika Nurmi and Dr. Susanna Chang are the physicians who research Tourette Syndrome and the other disorders that link up with TS. They work with another big name in the TS world, Dr. James McCracken. I have always wished I could ask these experts everything about Tourettes and get some real answers. Here is what I found out.
Why can't families who have a child with TS get better care?
The reality is that Tourette Syndrome is considered a relatively rare neurological disorder. Federal scientific agencies such as the National Institute of Health (NIH) along with the CDC estimate the prevalence rate of 0.3%; about 1 child in 360. Therefore, funds to support research, education and training are limited. Few physicians choose to specialize in TS and the related disorders after medical school. The complexity of a Tourette Syndrome diagnosis means physicians need to be able to treat the co-occurring conditions such as OCD, ADHD, depression and Oppositional Defiance Disorder. Tourette Syndrome presents a challenge to even the savviest of physicians.
Does the Clinic hand pick their patients?
No, the clinic does not hand pick patients. Our team sees patients aged from 4-18 and there is a long wait list. The training clinic is staffed by child psychiatry fellows and psychology interns who are directly supervised on-site and as treatment/therapy is in session. Some cases may be chosen for clinic visits depending on the acuity of the patient and if it will provide a good training experience for our clinicians.
Can you get in quicker if you participate in a research study?
No, however the program has 2 parts; the research arm and the clinical arm. These two departments often end up working together. Our team becomes familiar with the families who participate in the research studies and know their clinical needs. If those patients are a good fit for the training clinic, we can bring them across to assist further. Sometimes, clinic patients become interested in research studies and so they may also cross over into that clinical experience.
Can the Clinic give referrals to local professionals who treat TS patients?
Unfortunately, there are only a few professionals that our team is familiar with and feels comfortable referring families to. We see the need to develop a good referral list that has been researched and verified. Looks like joint project for the future!
Don't your graduates often stay in SoCal?
Some stay and others leave the area to pursue other opportunities. Many of those on our referral list are former trainees who we have supervised and know have the experience with TS and its treatments.
Don't you get funding from the National TAA to support and help our local
families affected by TS?
Funding from the national TAA is mostly for research projects. As a Center of Excellence, our Clinic has reached out to the So Cal Chapter and have committed to working on joint projects that support patients and families alike. More to Come!
Special Thanks to Dr. Susanna Chang for helping me get the details of our interview correct.
Janine Tejeda, President
ScholasTIC Tourette's Supporters, Inc.
