So much of the news in the past two years has been dominated by the discussion and study of COVID-19, we are happy to report on remarkable research with encouraging results in the field of Tourette Syndrome. This news is particularly encouraging for children, teens and parents who are navigating not only the typical challenges of growing up, exacerbated by the pandemic, but are also dealing with the impact of TS on life’s journey.
It is estimated that more than 200,000 Americans have full-blown TS, and that as many as 1 in 100 school-aged children show a partial expression of the disorder—such as chronic multiple tics or transient childhood tics. Studies suggest that one half of children with TS are undiagnosed.
What is Tourette Syndrome (TS)?
TS is a neurological disorder characterized by sudden, repetitive, rapid, and unwanted movements or vocal sounds called tics. TS is one of a group of disorders of the developing nervous system called tic disorders. There is no cure for TS, but treatments are available to help manage some symptoms.
Tics come and go over time, varying in type, frequency, location, and severity. The first symptoms usually occur between the ages of 5 and 10 years. The type, frequency and severity of tics vary widely and differ in every individual. It is reported that the majority of people with TS experience their most intense tics during their early teens. For some people, the frequency and severity of tics lessens as they enter adulthood while for others, the tics are chronic and can last long into adult life.
If you are looking for a more in-depth discussion of types of tics and symptoms of TS, visit “What is Tourette Syndrome“.
Existing Medical Treatment of TS
No medications currently in use eliminate tics completely. Physicians may prescribe medications to lessen the intensity of severe or disruptive tics caused by TS. These medications have existed for years. Unfortunately, the class of medications usually prescribed have side effects including weight gain, stiff muscles, tiredness, restlessness, and social withdrawal1. For many, especially parents raising children and teens with TS, the side effects can be seen as worse than the tics.
New Research on Treatments for Tics Shows Encouraging Results
A new study shows positive results in a drug called Ecopipam with fewer side effects.
Ecopipam targets the D1 receptor instead of the D2 receptor. Most medications currently used to treat tics are medications that have been approved by the U.S. Food and Drug Administration (FDA) for other purposes. Such is the case with Ecopipam, which failed as a weight loss medication.
Initial findings of the 90 day study show that Ecopipam may reduce tics by 30% in children and teens with TS without the unpleasant side effects of current treatments.2 The research which was released March 30, 2022, was to be presented at the American Academy of Neurology’s 74th Annual Meeting being held in Seattle, April 2 to 7, 2022 and virtually, April 24 to 26, 2022 (stay tuned for more information on this presentation).
The results reported in the study are promising and the study’s author Dr. Donald L. Gilbert of the Cincinnati Children’s Hospital Medical Center in Ohio, and a Fellow of the American Academy of Neurology, finds good reason to continue to study this treatment beyond the three month duration.
“Our results are exciting, because they suggest Ecopipam shows promise as a treatment for reducing the number, frequency and severity of the tics young people experience with Tourette syndrome,” said Gilbert. “That’s especially true because many people with the disease who are taking the medications currently available still have debilitating symptoms or experience weight gain or other side effects.”
The study was funded by Emalex Biosciences, LLC, maker of Ecopipam.
For more information on the Ecopipam study, visit: https://www.neurologyadvisor.com/conference-highlights/mds-2021/ecopipam-shows-promise-in-tic-reduction-in-children-with-tourette-syndrome/.
Other recent positive developments include a report from June 2020, in which scientists from the University of Nottingham’s School of Psychology and School of Medicine used repetitive trains of stimulation to the median nerve (MNS) at the wrist to entrain rhythmic electrical brain activity — known as brain-oscillations — that are associated with the suppression of movements. They found that rhythmic MNS was sufficient to substantially reduce tic frequency and tic intensity, and the urge-to-tic, in individuals with TS.
A wristband to deliver these stimulations has been developed and is being tested for wider use.
Dr. Alessandro Di Rocco, director of the movement disorders program at Northwell Health in Great Neck, N.Y., reviewed the findings.
“This is an exciting study with an intriguing rationale and promising preliminary clinical data,” said Di Rocco. “In recent years, a growing body of evidence has linked abnormal patterns of brain activity to the behavioral impulses associated with tics. This has led to attempts to regulate the abnormal pattern with brain stimulation techniques, including invasive surgical interventions such as deep brain stimulation.”
“While there is evidence that these techniques may be effective, neurosurgical intervention can lead to potentially serious complications, while other forms of external stimulation require expensive setup and can only be administered in a clinic setting,” said Di Rocco. “Using this portable, seemingly easy-to-use device to stimulate the median nerve at the wrist may disrupt the abnormal brain activity and reduce tics with few risks or side effects.”
“If confirmed, this type of stimulation may become an innovative, inexpensive and transformative way to treat tics and possibly other involuntary movements associated with abnormal network activation.”3
To learn more about treatment of TS symptoms with medication, be sure to sign up for and attend our May 4 webinar: Medication Management of Tourette Syndrome and Co-Occurring Conditions.
In this presentation, Dr. Takijah Heard, a Pediatric Neurologist with NeurAbilities, will review the recommended medication treatments and side effects for treating Tourette Syndrome along with other neurological and neuropsychiatric conditions that can co-occur.
For more information and to register, go to https://njcts.org/tourettesyndromeprograms/wednesday-webinar-sign-up/
Note: The NJ Center for Tourette Syndrome & Associated Disorders (“NJCTS”) and its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented here. We do not endorse any recommendation or opinion made by any member, presenter, writer or physician, nor do we advocate any treatment. You are responsible for your own medical decisions. We are providing general information and not any therapy or other health services.