Tourette's syndrome is a neurological disorder that is characterized by tics – sudden involuntary movements or vocalizations that are linked to slight dysfunction in the brain.
Estimates from the CDC suggest about 1 in 50 children in the U.S. are affected by tics that are linked to Tourette’s. Not all tics are Tourette’s, which can be complicated for adolescents who may want to self-diagnose Tourette’s syndrome.
Yuliya Snyder, MD, is a pediatric neurologist with Rochester Regional Health who specializes in neuromuscular disorders, epilepsy, and headache medicine. She explains how Tourette’s syndrome is diagnosed and treated, and why a professionally-confirmed diagnosis matters.
Recognizing Tourette’s
Some patients with Tourette’s begin showing signs of a tic as young as age 2, but most typically have one show up around age 6. Most patients are diagnosed by 11. Boys are about 4 times as likely as girls to have Tourette’s; tics are less frequent in African-American children.
Tics are described as brief, repetitive, and sudden. Most of the time, people have at least some degree of control over them and are able to hold them back for short periods of time.
There are two categories of tics: motor and vocal. Motor tics might include blinking, shoulder shrugs, facial grimacing, tapping fingers, or other similar movements. Vocal tics might include throat clearing, sniffing, humming, or shouting. These tics can be simple – a single movement or a single noise – or complex – multiple movements or multiple words or a phrase.
To be diagnosed with Tourette’s, a patient must:
- Have at least two motor tics or at least one vocal tic
- Live with the tic(s) for at least one year
“There are a lot of factors to consider when weighing a patient’s symptoms and confirming it as Tourette’s,” Dr. Snyder said. “This can depend on the type of movement, what it looks like when it comes on, what it feels like to the patient, and if they can control it.”
Treatment
Following a Tourette’s diagnosis, treatments fall into two categories: medication-related and non-medication-related options. Overall, treatments for Tourette’s patients are generally not prescribed unless a tic is bothering the patient and is interfering with their daily quality of life.
Prescribing a medication depends on the needs of the patient. Medications range from relatively mild old blood pressure medications such as guanfacine and clonidine, to antipsychotics such as aripiprazole. Once a provider prescribes a medication, they will work with the patient and their family to determine if the patient responds better to a small dose or large dose.
Non-medication treatment might include Comprehensive Behavioral Intervention for Tics (CBIT), which teaches patients to recognize signs of a tic coming on and do something else to make the tic less noticeable. For example, with a vocal tic, a person might take a deep breath instead of a tic as they feel it coming.
In rare circumstances, surgical procedures like deep brain stimulation are used to change electrical activity in areas of the brain affected by tics.
“Tics tend to come on at times of excitement, positive or negative, physical or emotional changes,” Dr. Snyder said. “Give it some time, and the tics will begin to settle down. Most patients do not end up needing or requesting treatment.”
Self vs. professional diagnosis
Confirming a diagnosis of Tourette’s syndrome may seem straightforward. However, since tics are clinically diagnosed and are not tested for, a proper diagnosis by a neurologist is invaluable.
“Most of the tools we have at our disposal – brain scans, brain wave tests, nerve tests – all of them supplement a neurologist’s clinical expertise and initial diagnosis,” Dr. Snyder said.
Recognizing the significance of a neurologist confirming Tourette’s syndrome is especially important given the rise of self-diagnosis in younger patients recently. Over the last couple years, videos on TikTok related to Tourette’s have surged in popularity. Users have racked up more than 8.6 billion views on the topic of Tourette’s and 560 million views on the topic of self-diagnosed Tourette’s.
Other conditions need to be ruled out by a neurologist, as well. Instead of tics pointing to Tourette’s, an involuntary movement might be a seizure, a symptom of a different movement disorder, an involuntary movement stemming from a psychological disorder, or a brain lesion.
Patients often need to undergo other methods of testing to confirm a non-Tourette’s diagnosis, such as an EEG or MRI brain scan.
As children grow older, Dr. Snyder said research suggests one of three outcomes. Approximately one third of children will completely outgrow their tics, one third will still have tics but improve, and one third will carry their tics into adulthood. But no matter the outcome, patients and their families should exercise caution in diagnosing Tourette’s without a neurologist.
“There is no substitute for going through a lot of training,” Dr. Snyder said. “There is a substantial amount of pattern recognition and consistently seeing a lot of kids with these tics to be able to pick up on what constitutes a diagnosis.”
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