Tourette Syndrome Fast Facts
An estimated 1 out of every 162 American children has Tourette Syndrome (TS), either diagnosed or undiagnosed.
Approximately 138,000 American children between the ages of 6 and 17 have been diagnosed with TS.
More than a third of children with TS, about 37%, experience moderate to severe symptoms.
Older children between the ages of 12-17 are much more likely than younger children to be diagnosed with TS.
Boys are much more likely than girls–approximately 3 to 5 times more likely–to be diagnosed with TS.
Non-Hispanic white children are twice as likely to be diagnosed with TS than those from other racial or ethnic groups.
Most children diagnosed with TS are also diagnosed with one or more other mental, behavioral, or developmental disorders.
More than a third of people diagnosed with TS also suffer from obsessive-compulsive disorder.
More than a third of people diagnosed with TS also suffer from obsessive-compulsive disorder..
What is Tourette Syndrome?
Tourette Syndrome (TS) is a neurological disorder that causes sufferers to experience repetitive uncontrollable–or difficult-to-control–physical movements or involuntarily produced vocal sounds. These movements or sounds, called tics, may be quite simple or consist of complex movements or verbal sounds.
TS is named for French neurologist Georges Gilles de la Tourette, who first described the disorder in 1885 when he observed an 86-year-old female patient.
The tics characteristic of TS are generally classified into two different groups: simple tics and complex tics. Simple tics usually are produced by involuntary movement of a small number of muscles, and complex tics are movement patterns produced by more muscle groups. Tics are also classified as either motor tics, which involved physical movement of the body, and vocal tics, which involve the utterance of sounds or words.
Common simple motor tics include:
- Head jerking
- Rapid eye movements
- Lip movement
- Nose twitches
Common simple vocal tics include:
- Throat clearing
- Gutteral sounds such as grunting
- Sharp sounds such as barking
Common complex motor tics include:
- Ritualistic touching of objects
- Repeating other people’s movements
- Hopping up and down
- Obscene gestures
Common complex vocal tics include:
- Repetitive utterances of words or phrases
- Repeating things other people say
- Spontaneous use of vulgar or obscene language (although this tic is often thought of as characteristic of TS, it affects only 10 to 15% of sufferers)
Severity of Symptoms
TS tics vary in frequency and severity from person to person, and they can change over time. They’re often at their most severe during the teen years and lessen in severity as the sufferer gets older. At their worst, the tics may cause significant disruption in the sufferer’s daily life.
It may not be clear what triggers tics, but the sufferer may experience warning symptoms such as an itching or tingling sensation relieved by the tic. Periods of stress, fatigue, or illness may also cause a worsening of TS symptoms, and the tics often continue even when the sufferer is asleep.
What Causes Tourette Syndrome?
The exact cause of TS is not known at present. It is undoubtedly a neurological disorder, meaning that it stems from dysfunction in the brain or nervous system. However, scientists are still working to determine precisely which parts of the brain are affected and how.
The current thinking is that TS probably results from a combination of factors, including an increased risk for developing the disorder that a sufferer inherits from his or her family and environmental conditions that trigger the disorder’s development.
Is Tourette Syndrome Hereditary?
Studies have strongly suggested that TS is inherited and is passed down through families. At one time, researchers believed that there might be a single gene [a gene is a pattern of DNA that parents pass on to their children] that causes TS and that if that gene was passed to the child from one parent, the child was at risk of developing the disorder. Now scientists believe that the disorder may be the result of interaction between several different genes. They also believe that external factors in the sufferer’s environment might also be required to cause TS’s development.
Not everyone who has a family history of TS will develop TS. They may not develop TS at all, or they may develop milder tics or obsessive-compulsive symptoms. Boys with a family history of TS are much more likely than girls to develop the disorder.
How is Tourette Syndrome Detected?
The first signs of TS usually occur early in childhood, between the ages of 5 and 7, and the most severe symptoms typically occur between the ages of 8 and 12. That means parents need to be alert to early signs of the disorder to get prompt diagnosis and treatment.
Some of the most common tics that show up first are simple motor tics such as blinking, sniffing, and throat clearing. The first tics most often involve the muscles of the face, head, or neck. This differs from the repetitive movements associated with disorders such as autism, which usually involve the extremities.
The early signs of TS are often mistaken for symptoms of allergies, respiratory conditions, or vision problems. Children can sometimes suppress tics during times of distraction or concentration, so careful observation is necessary to spot persistent symptoms.
How is Tourette Syndrome Diagnosed?
To diagnose TS, doctors look for a pattern of symptoms, risk factors, and family history. An important consideration is what tics are present, how often they occur, and how long they’ve been happening.
Doctors will look for these signs of TS:
- The existence of both motor and vocal tics. Both kinds of tics don’t have to occur at the same time, however.
- Tics that occur regularly for at least a year.
- Tics that start before the age of 18.
- Tics that change over time or in different circumstances.
- Tics that don’t have another apparent cause.
The diagnostic process might also include:
- A physical exam. This exam will be aimed at ruling out specific physical conditions that could be causing the symptoms.
- Blood tests. These tests are not to diagnose TS itself but to rule out other conditions that might be causing the tics.
- MRI or CT imaging scans, or an electroencephalogram (EEG). An MRI uses a strong magnetic field to create images of a patient’s brain and circulatory system. A CT scan uses X-rays to create images of your brain. An EEG measures electrical activity in your brain. Again, these tests will be used to rule out other causes for the symptoms. They’re most likely to be used when the presentation of symptoms is unusual, such as tics that first occur during adulthood.
How is Tourette Syndrome Treated?
There is no known cure for TS, but tics can often be controlled through the use of medications, psychotherapy, or a combination of the two. When tics are mild and don’t significantly interfere with day-to-day functioning, no treatment may be necessary.
Several different classes of medications have shown at least some effectiveness in reducing or suppressing TS tics. These classes of drugs include:
- Dopamine blockers. Dopamine is a naturally occurring chemical in the brain that helps transmit nerve impulses, and some drugs that limit that amount of dopamine may be effective at decreasing TS tics. These drugs include fluphenazine, haloperidol, risperidone, and pimozide. These drugs’ potential side effects include weight gain, and they may even sometimes cause involuntary physical movements.
- Stimulants. Medications used to treat attention-deficit/hyperactivity disorder (ADHD) may help suppress tics by helping the sufferer concentrate. These medications include methylphenidate and dextroamphetamine. In some cases, though, the drugs may make tics worse.
- Botulinum injections. Also called botox, these injections sometimes help control motor tics when administered directly to the site where the tic occurs.
- Epilepsy treatments. The drug topiramate, which is used to prevent seizures in epileptic patients, can sometimes control some TS sufferers’ tics.
- Antidepressants. Antidepressant drugs such as fluoxetine, which regulate levels of the brain chemical serotonin, are sometimes used to treat the symptoms of TS and associated disorders.
Psychotherapy and Other Therapies
Non-drug therapies are also often used to help sufferers deal with their TS symptoms. These therapies include:
- Cognitive Behavioral Therapy (CBT). This type of talk therapy has the goal of helping the sufferer identify the situations and behaviors surrounding their tics so that they can develop effective strategies for suppressing or otherwise controlling the symptoms of TS.
- Psychotherapy. Talk therapy with a psychologist or other mental health professional can help someone with TS learn to cope with the disorder’s impact and the other associated disorders that often go along with it.
How does Tourette Syndrome Progress?
The good news about TS is that symptoms usually peak early in life and decrease in severity as the sufferer gets older. In many cases, the tics disappear entirely by the time the sufferer reaches adulthood, and no treatment may be necessary to control symptoms after that point. There is no cure for the disorder, but it does not typically worsen as time goes on.
On the less positive side is the fact that those who have TS almost always suffer from some other brain disorder that may continue to cause problems into adulthood even as the symptoms of TS begin to fade. Disorders that are commonly associated with TS include:
- Obsessive-compulsive disorder (OCD)
- Attention-deficit/hyperactivity disorder (ADHD)
- Autism spectrum disorder
- Depression or anxiety disorders
- Sleep disorders
- Learning disabilities
- Anger-management difficulties
These disorders often require treatment throughout the sufferer’s life, even after TS’s symptoms have decreased.
How is Tourette Syndrome Prevented?
There is no known way to prevent TS. The genetic mechanism that causes the disorder is not yet known, so there is no way to know how to head off the disorder in someone who is predisposed to it. Scientists also don’t yet know which environmental factors, if any, may trigger the development of the disorder in someone with a genetic predisposition, so it’s impossible to avoid risky situations or habits.
The best way to deal with the potential for developing the disorder is to know when you (or your child) are at risk so that you can be alert for early signs. Those with a family history of the disorder are at the greatest risk, and boys with a family history are at a much greater risk than girls.
Tourette Syndrome Caregiver Tips
Because the onset of TS almost always occurs in childhood, the disorder’s impact falls heavily on the parents of affected children. When symptoms of the disorder are severe, they can cause significant problems in the child’s daily functioning, socialization, and self-image. That’s a challenging situation for a parent to cope with, but you can help your child handle the disorder with a minimum of disruption and long-term harm by being a well-informed caregiver.
To be the best caregiver, keep these tips in mind:
- Learn all that you can about Tourette Syndrome. Pursuing education is good advice no matter what disorder your child is suffering from. Still, because TS’s effects are so widely misunderstood, you must become an expert on the disorder for your child’s sake.
- Teach others about TS. Your child’s teachers and peers are unlikely to know how to respond to your child’s TS symptoms. Don’t hesitate to educate them whenever necessary, and never stop being an advocate for your child so that he or she gets the appropriate treatment at school and everywhere else.
- Be your child’s biggest cheerleader. Coping with TS can take a significant toll on your child’s self-esteem, so he or she can benefit from your support. Help your child recognize his or her strengths and encourage them to focus on everyday successes.
- Don’t lose hope. When TS symptoms are at their peak, your child’s daily struggles may seem bleak. Take heart, however, in the knowledge that TS almost always gets better in time.
- Get help from others. If you feel overwhelmed, look for a TS support group, either in your local community or online.
Tourette Syndrome Brain Science
A thorough understanding of Tourette Syndrome has so far eluded scientists because the disorder seems to be extraordinarily complex, both in its causes and in the way it manifests itself in the brains of sufferers. Although TS appears to be passed through families genetically, there does not seem to be a single gene that triggers the disorder’s development. Recent research suggests, instead, that the disorder is caused by mutations [a mutation is an abnormal change in a gene that causes it to act differently than it should] in several different genes. These multiple mutations likely interact with one another to cause the abnormal brain development that causes TS.
Even at that stage, however, TS is far from simple. Another study used a computer simulation to suggest that TS isn’t caused by a problem in just one part of the brain. The study indicated that TS tics might be caused by abnormal interactions between several different parts of the brain.
Tourette Syndrome Research
Title: Online Mindfulness-based Tic Reduction (Phase Two)
Principal Investigator: Hannah Reese, PhD
Tourette Syndrome (TS) and Persistent Tic Disorder (PTD) are chronic and potentially disabling neurobiological conditions. Although a range of pharmacological and psychosocial treatments exists, a significant number of individuals either do not respond to the current therapies or find them unacceptable. Thus, researchers must continue to develop and test novel treatment approaches.
In this randomized controlled trial, the investigators will compare two different online group-based interventions for tics: a mindfulness-based program (Mindfulness-based Intervention for Tics (MBIT), and a psychoeducational and supportive therapy program (Tic Information and Coping Strategies (TICS)). The purpose of this study is to determine which intervention is more helpful for adults with a tic disorder.
Title: Thalamic Deep Brain Stimulation for the Treatment of Refractory Tourette Syndrome
Principal Investigator: William S. Anderson, PhD, MD
Johns Hopkins University
This research is being performed to try to understand if the use of deep brain stimulation or DBS can treat the symptoms of Tourette syndrome that do not respond well to current medications. To do this, the investigators will place small stimulation leads on both sides of the brain in a region (a portion of the thalamus) that may alter the abnormal activity in the brain contributing to the symptoms of Tourette syndrome. This requires two surgical procedures and several preoperative and postoperative visits for tuning the stimulation parameters and recording stimulation effects. The FDA has not approved DBS for use in people with Tourette syndrome, and Medtronic (the manufacturer of the device) has not conducted testing for the system in Tourette syndrome. Therefore its use in this study is experimental.
Title: Proof of Concept Study of an Oral Orthotic to Reduce Tic Severity in Chronic Tic Disorder and Tourette Syndrome
Principal Investigator: Shannon Bennett, PhD
Weill Cornell Medical College
New York, NY
The study is a 2 group, two-week randomized controlled feasibility trial of an active vs sham oral orthotic to reduce tic severity in children and adolescents ages 7-25 years. Responders to acute-phase treatment will be followed for ten additional weeks (12 weeks total) to assess intervention durability, safety, and acceptability. Non-responders to the sham orthotic will be provided active treatment at the end of the 2-week acute phase. We aim to assess and enroll 24 participants; twelve participants will receive an orthotic adjusted to the appropriate therapeutic height. Twelve participants will receive an identical sham orthotic, but not adjusted to the recommended height for the given participant.
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