What is Tourette Syndrome?
Tourette Syndrome
Does your child make sudden, repetitive sounds or movements they can’t easily control? Is it causing them stress in social situations? Your child may be living with Tourette syndrome.
How Common Is Tourette Syndrome?
Tourette syndrome usually begins in childhood, often around age 6, though it can start earlier or later. Boys are about three times more likely to have Tourette syndrome than girls. The CDC estimates that about 1 in 162 children (0.6%) have Tourette syndrome, including children who have not been diagnosed. About half of children with Tourette syndrome may not have a diagnosis. Most children with Tourette syndrome also have at least one other condition, such as ADHD or obsessive-compulsive disorder (OCD) (1).
What Is a Tic?
A tic is a sudden, repetitive movement or sound that is hard to control. Tics can be mild or severe, and they can interfere with communication and quality of life. Simple motor tics are brief movements involving a few muscle groups, such as eye blinking or facial grimacing. Simple vocal tics include sounds like sniffing, barking or throat clearing. Complex motor tics involve coordinated patterns of movement across several muscle groups, such as gestures or repeating certain actions (2). Complex vocal tics include repeating one’s own words or phrases. In some cases, complex tics can involve self-injury.
Tics often change in frequency and severity over time and in different situations. Anxiety, stress, illness, excitement and fatigue can make them worse. Tics may get worse around puberty and often improve in adulthood. Most people feel an urge before a tic, and holding a tic back can cause discomfort and anxiety. Suppressing a tic can take a great deal of effort.
What Are the Signs of Tourette Syndrome?
Tourette syndrome is diagnosed by a healthcare provider. A diagnosis requires both motor tics and at least one vocal tic, though not necessarily at the same time. The tics must have been present for more than a year since they first began, they must start before age 18, and they must not be caused by a medication, substance or another medical condition.
The most common vocal tics include throat clearing, grunting, clicking and other sounds. Common motor tics involve the nose, mouth, eyes, head, neck or shoulders. People with Tourette syndrome often repeat the same types of tics over and over. Tics can also occur without Tourette syndrome, since they can be caused by medications, head injuries and other conditions. The media often portray Tourette syndrome as involving coprolalia, the involuntary use of obscene words. This is actually uncommon, and most people with Tourette syndrome never experience it (3).
How Does Tourette Syndrome Affect the Brain?
Tics usually happen in response to an urge. Imagine you’re in a conversation and about to make an important point, and the other person cuts you off right before you speak. You’re left with a building tension that keeps cycling until you finally get to say what you wanted. Many people with Tourette syndrome describe feeling an urge like this much of the time. This urge is thought to involve differences in dopamine pathways in the frontal lobe and basal ganglia.
Dopamine is a brain chemical with many roles, including in the brain’s reward system. When we do something successfully, the brain releases dopamine to reinforce that action.
Research points to differences in the dopamine system in Tourette syndrome (4, 5). One theory suggests that people with Tourette syndrome may have lower background levels of dopamine, which makes their dopamine receptors more sensitive. When a tic happens, it relieves the urge, the brain feels rewarded, and over time the tic is reinforced.
Studies have also found differences in interneurons in Tourette syndrome. Interneurons are nerve cells that fine-tune communication between other nerve cells and pathways. Research suggests they may be reduced in number and working differently in Tourette syndrome (6).
Dopamine is especially important in the basal ganglia, one of the brain’s main regulating networks. The frontal lobe and basal ganglia work together in what’s called the frontostriatal circuit, which acts like both a gas pedal and a brake for movement and emotional control. Research suggests this circuit works differently in tic disorders and Tourette syndrome (7, 8).
How Is Tourette Syndrome Usually Treated?
Many children with mild tics don’t need treatment. For those who do, the American Academy of Neurology recommends a behavioral therapy called Comprehensive Behavioral Intervention for Tics (CBIT) as a first-line treatment. CBIT teaches children to recognize the urge before a tic and use a competing response instead (9).
Medications may also be used, especially when tics are severe or when behavioral therapy isn’t enough. These include alpha-2 agonists such as clonidine and guanfacine, which can be helpful when a child also has ADHD, and antipsychotic medications such as haloperidol, risperidone and aripiprazole. Medications for ADHD, OCD or anxiety may also be used when those conditions are present. All medications can have side effects, such as weight gain, fatigue and restlessness, so they need careful management by your child’s prescriber (9).
Tics often improve by late adolescence or early adulthood. Even so, the stress and embarrassment a child may experience along the way can affect their confidence and self-esteem, which is why support during childhood matters.
How the NeuroRescue Program Can Help
Our care is designed to work alongside your child’s pediatrician, neurologist, therapists and school team, never in place of them. Please don’t change any of your child’s medications without talking with their prescriber.
The frontostriatal circuit is especially important in Tourette syndrome. Together, the frontal lobe and basal ganglia form one of the brain’s main braking systems, helping hold back unwanted behaviors and involuntary movements like tics. Research shows that the basal ganglia become more active when people suppress tics, and that as children get older, a part of the frontal lobe called the dorsolateral prefrontal cortex plays a larger role in holding back unwanted responses (10).
Eye movements and inhibition. When the brain’s dopamine system isn’t working well, it’s harder to resist unwanted urges, like the pull to look at something distracting. The same frontal and basal ganglia areas that help hold back unwanted responses also control certain kinds of eye movements. That means we can use eye movements both to measure how well these braking systems are working and to help train them.
We measure eye movements with videonystagmography (VNG), which uses infrared cameras to track a wide range of eye movements and compare them to typical results. One important type is the saccade, a quick jump of the eyes from one target to another. An anti-saccade asks the eyes to jump away from a new target instead of toward it. This is harder, because it means holding back the automatic urge to look at the target. Anti-saccades rely heavily on the dorsolateral prefrontal cortex. We often use anti-saccade exercises with people with Tourette syndrome, with the goal of strengthening the brain’s ability to hold back unwanted responses.
Jeter and colleagues found that people with Tourette syndrome made more errors on simple saccades, had slower reaction times on anti-saccades, and made more errors on saccades to remembered targets, which also require spatial memory (11).
Jung and colleagues found that people with Tourette syndrome had slower, weaker eye movements on simple saccade tasks than healthy people. But when simple saccades and anti-saccades were mixed together in a harder task, people with Tourette syndrome performed better than the healthy group (12). This suggests that people with Tourette syndrome may perform better on more challenging tasks than on simple, repetitive ones.
Rhythm and timing. Anti-saccade exercises are just one way to engage the brain’s braking systems. We also use rhythm and timing therapies aimed at improving coordination within the basal ganglia network. Studies show that motor timing is impaired in children with Tourette syndrome and related basal ganglia disorders (13). We use a therapy system called the Interactive Metronome, which has been studied for improving timing and related skills (14).
Balance. Children with Tourette syndrome can also have problems with balance and posture. In one study, children with Tourette syndrome had more trouble keeping their balance than healthy children, especially when their senses were challenged (15). Poor balance raises the risk of falls and injuries, including concussion. When testing shows a need, your child’s program may include vestibular rehabilitation.
Primitive reflexes. Babies are born with automatic movement patterns called primitive reflexes, which help the brain develop. These normally fade during the first years of life. Some research has linked retained primitive reflexes with neurodevelopmental conditions, and some studies suggest that exercises to help these reflexes fade may be helpful in a range of neurodevelopmental disorders (16). When an exam shows retained reflexes, your child’s program may include these exercises.
Transcranial magnetic stimulation for adults. Transcranial magnetic stimulation (TMS) uses a magnetic coil placed against the head to deliver gentle magnetic pulses to the brain, and it has been studied for improving behavioral control, including tic suppression (17). At our clinic, TMS is provided by our psychiatric mental health nurse practitioner and is offered only to patients 18 and older. Because tics can continue into adulthood for some people, it may be an option for adults.
Every NeuroRescue Program is different, with therapies chosen based on testing and each person’s specific situation. No two brains are alike, and no two programs are either.
How the NeuroRescue Program Works
Your child’s NeuroRescue Program begins with their Discovery Day. We start with a detailed history of your child’s condition and life on a timeline, along with a neurological exam done at a pace that works for your child. This helps us understand the factors that may have contributed to where they are now, and identify related conditions that may be making it harder to move forward.
We measure how your child’s visual, vestibular and balance systems are working through computerized analysis of eye movements, inner ear reflexes and balance under different conditions. Our testing includes videonystagmography and saccadometry to measure several types of eye movements, the video head impulse test to measure inner ear reflexes, and CAPS computerized posturography to assess balance under different sensory conditions. We also use NeuroSensoryMotor Integration testing to evaluate hand-eye coordination and cognition, and Virtualis testing to assess dynamic eye tracking and perception of vertical in a virtual reality environment.
We combine this with a thorough physical and neurological exam of your child’s sensory, motor, autonomic and cognitive systems. We also review any relevant lab work, imaging and prior testing, and integrate it with our findings.
Together, this helps us understand which parts of your child’s nervous system are working well, which are struggling, and how quickly they tire. We use that information to design a personal NeuroRescue Program, aimed at improving function and endurance in the systems that need support. Our testing also helps us decide when to push and when to let your child rest.
Our goal is to help your child feel more in control, more comfortable and more confident at home, at school and with friends.
Your Next Step
Living with Tourette syndrome can be challenging, but there is real hope for improvement. To find out if the NeuroRescue Program is right for your child, contact one of our patient care coordinators to schedule a Discovery Day.
It’s never too late to take the next step.
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