Dr. Tolga Taneli and teen advocate Grace Hawruk addressed this subject and more during a Patient-Centered Medical Education grand rounds presentation January 25.
NEWARK – Tics are repeated involuntary movements and vocal sounds. They are a big part of the daily routine of the 1 in 100 children diagnosed with Tourette Syndrome – a misunderstood, misdiagnosed, inherited neurological disorder. They often can be treated, to a degree. And they often can be significantly altered by weather, the changing of seasons and other factors.
More than 50 pediatricians, medical residents and psychiatrists of the New Jersey Medical School at UMDNJ learned just that during “Living Tourette with Grace: Patient-Centered Education,” a grand round presentation by the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) on January 25 at UMNDJ.
Featuring Dr. Tolga Taneli, Director of the Division of Child and Adolescent Psychiatry at UMDNJ, and peer youth advocate Grace Hawruk, this grand rounds is part of NJCTS’ unique Patient-Centered Medical Education program – which provides medical professionals at New Jersey hospitals the opportunity to hear directly from adolescents/young adults with TS and their families, and gain an understanding of their perspectives, stresses and needs.
One of the biggest needs of those with TS is to be properly diagnosed with the condition in a timely manner. According to Dr. Taneli, many patients face misdiagnosis for 5 to 12 years – which is why pediatricians play such a vital role in early diagnosis. Once they are diagnosed, there are myriad treatment options. But in many cases, like that of Hawruk, finding the right course of treatment isn’t always easy. Collaborative Partnerships for the Tourette Syndrome Community Photo by NJCTS Grace Hawruk and Dr. Tolga Taneli deliver a grand rounds presentation on January 25 at New Jersey Medical School.
“I tried several medications until finding one I could live with,” said Hawruk, 17, a junior at DePaul Catholic High School who lives in Butler. Hawruk noted that medication has been needed most as summer approaches. That’s when her “squeaking like a dog” tic tends to be at its worst.
Treating tics and TS with medication can be difficult, Taneli says, because some treatments come with a high risk of side effects.
“I ask patients what they can live with,” said Taneli, who has been with UMDNJ’s Division of Child and Adolescent Psychiatry since 2005. “Finding out a patient’s ‘livable tics’ is important because chasing tics to zero or exhibiting zero symptoms of TS comes at the cost of side effects. We need to find the right balance of what’s acceptable to patients.”
Also discussed was the difference between tics and compulsions, why certain individuals are able to purposefully suppress tics to suit a particular situation and the use of premonitory urges – the sense that a tic is about to present – to practice suppression.
The learning objectives of Patient-Centered Medical Education grand rounds presentations such as this one include identifying and differentiating between the signs and symptoms of patients with varying tic disorders; describing and identifying common associated conditions in individuals with TS; determining the latest advances and comprehensive approaches for treatment for individuals with tic disorders; and fostering a patient-centered perspective of life with TS. In addition to UMDNJ, NJCTS has completed Patient-Centered Medical Education sessions at the following New Jersey Hospitals:
- Overlook Medical Center Bristol-Myers Squibb Children’s Hospital
- Robert Wood Johnson University Hospital
- Jersey Shore Medical Center
- Saint Peter’s University Hospital
- Goryeb Children’s Hospital Newark
- Beth Israel Medical Center
- JFK Medical Center
- CentraState Medical Center
The next Patient-Centered Medical Education grand rounds presentation will take place at April 11 at Monmouth Medical Center in Long Branch. Featuring Dr. Robert King of the TS/OCD Clinic at Yale University, this grand round will be open to all community medical professionals. More information is available by calling 908-575-7350 or by visiting www.njcts.org.