Tourette syndrome (TS) is named for Dr. Georges Gilles de la Tourette, a French neurologist who first described a series of children and adults with the condition in 1885.
What is Tourette syndrome?
Tourette syndrome (also called Tourette’s disorder or simply, "Tourette’s") is an abnormal neurological condition characterized by motor and vocal tics. Tics are involuntary, rapid, sudden repetitive movements or sounds.
Tics can be classified in a variety of ways. Motor tics can affect any part of the body including the head, neck, face, arms, shoulders, hands, feet, or legs. Facial tics, especially eye blinking, are usually the first symptoms of TS.
Vocal tics are sounds that are made involuntarily. Vocal tics can include clearing the throat, coughing, sniffing, grunting, yelping, or shouting. In a few cases, vocal tics can include strange, inappropriate, or obscene words and phrases (called coprolalia). Vocal tics can also appear as constantly repeating the words of others (echolalia).
Tics are classified as simple and complex. Simple tics are sudden, brief movements or sounds that involve a limited number of muscle groups. They are isolated occurrences and are often repetitive. Simple tics include eye blinking, shoulder shrugging, head twisting, nose twitching, facial grimacing, head jerking, yelping, sniffing, and others. Complex tics are distinct, coordinated patterns of successive movements involving several muscle groups or the utterance of words. Complex tics including jumping, smelling objects, touching the nose, touching other people, coprolalia, or echolalia.
Tics worsen in stressful situations and generally improve when a person is relaxed or sleeping. Most tics are mild and not very noticeable. Others can be frequent and painful, interfering with many parts of a person’s life and with his or her ability to function normally.
Who is affected by TS?
TS affects an estimated 200,000 Americans. It is also estimated that 1 in 100 Americans show a partial expression of the disorder, such as transient childhood tics. TS is three to four times more common in males than in females.
TS generally begins in childhood between the ages of 5 to 8 years and may be lifelong. Some symptoms disappear by early adulthood, while others may continue. Often, TS becomes worse for children as they enter adolescence but improves in the late teens or early 20s. Some people with TS experience complete remission (absence of symptoms) after adolescence. In adulthood, the condition generally does not worsen and assumes a steady pattern. Even though not everyone outgrows TS, they can learn to adapt and often are able to mask their tics. People with TS can expect to live a normal life span.
What other conditions are associated with TS?
Not all people with TS will have a coexisting behavioral condition. However, some people with TS may also have Attention Deficit Hyperactivity Disorder (ADHD). Children with ADHD have difficulty following directions, concentrating, organizing tasks, and completing school work within time limits. Completing homework in a consistent and timely manner is also a problem for children with ADHD.
Children with TS also have learning disabilities which can include dyslexia as well as reading, writing, arithmetic, and perceptual difficulties. If ADHD and learning disabilities are managed appropriately, people with TS learn to focus their attention, develop their personal strengths, and become quite productive and successful.
Other conditions associated with TS can include anxiety, impulsive or self-injurious behavior, and obsessive compulsive disorder [characterized by anxiety-provoking, repetitive, intrusive thoughts (obsessions) and/or behaviors that are performed over and over without the individual’s control (compulsions).
What causes TS?
The cause for TS is unknown. Early research suggested that TS is an inherited condition (often, the person’s near or distant relatives have had some form of transient or chronic tic disorder or associated symptoms). Recent studies point to a combination of environmental and genetic factors as a cause of the disorder. The specific genes involved in the development of TS are still being investigated.
Studies suggest that TS has a neurological basis and results from an abnormality which affects the brain’s metabolism of certain neurotransmitters (chemicals in the brain that regulate behavior.)
Current research being funded by the Tourette Syndrome Association (TSA) will help provide more information about the causes and genetic factors of TS.
How is Tourette syndrome diagnosed?
There are currently no X-rays or lab tests that can be performed to confirm a TS diagnosis. The clinical diagnosis of TS is based on a combination of factors, including:
- Careful and detailed medical and family history
- Complete physical and neurological exam (the results of these exams are usually normal but may sometimes be needed to rule out other illnesses)
- Onset of involuntary movements (tics) between the ages of 3 and 21
- Presence of recurrent, multiple motor and vocal tics, but not necessarily occurring at the same time
- Tics that occur many times a day, nearly every day or on and off throughout the duration of a year or longer
- Changing severity of tics and change in the number, frequency, type and location of tics
- Duration of symptoms for more than one year
Differentiating tics from other types of uncontrollable movements (such as myoclonus, chorea, athetosis, and dystonia) can be done by history and by observation of the involuntary movements.
An accurate diagnosis is sometimes difficult in patients who have a relatively recent onset of tics or in those who do not have all of the symptoms of TS as listed previously.
Electroencephalogram (EEG), magnetic resonance imaging (MRI) and computed tomography (CAT scan or X-ray of the brain) tests are not needed to confirm a TS diagnosis but may be performed to rule out other neurological conditions.
Medical researchers are looking for biological "markers" which may be useful in diagnosing patients even before clinical signs are present.
What are the treatment options?
Most people with TS are not significantly impaired by their symptoms and therefore do not require treatment with medication.
However, several medications are available to control TS symptoms that interfere with functioning. Except in more severe cases when tics are sometimes painful, the main reasons for medication are to improve appearance and lessen embarrassing social interactions.
As with all medications, there are possible side effects that should be monitored carefully by the physician.
Patients should always be included in the decision to take medication, as they are the best judge of how disruptive the symptoms are to them.
Early diagnosis and treatment are crucial to help the person with TS cope with his or her condition. Often, people make fun of a person with TS. Parents of children with TS also may find it difficult to cope with their child’s behavior. When people with TS are diagnosed correctly and treated for the condition early, they can learn to cope with their disorder and accept that they are ok and normal.
In severe cases of TS that do not respond to medical treatment, a brain surgery, known as deep brain stimulation or DBS may be considered to improve symptoms. DBS involves placing tiny electrodes into the brain to help control TS symptoms. DBS can reduce 30-50% of tics in most patients.
Is psychological treatment helpful?
Psychological counseling can help parents learn to provide an appropriate environment for the child, especially for homework completion. Psychological counseling may also help children and their families deal more effectively with the social and emotional aspects of TS. Counseling can be an important part of treatment and should not be overlooked.
Relaxation and biofeedback methods may also be helpful to help people with TS reduce stress, which helps reduce tics and other symptoms.
Myths about Tourette syndrome
Myth: When diagnosing TS, a doctor must witness the person’s tics in his or her office.
Although it is helpful to see the tics demonstrated in the doctor’s office, it is not necessary for a doctor to witness the tics to confirm the diagnosis. Many people, especially children, will suppress tics while being evaluated because they don’t want the doctor to think of them as "weird" or "crazy."
Myth: People with TS can suppress tics for as long as they desire.
Because tics are caused by a chemical imbalance in the brain, physical and vocal tics are completely involuntary (much like a sneeze). Although tics can be suppressed for a short time, the length of suppression is not under the individual’s control. Eventually tension causes the tic to be released. The ability to suppress tics changes constantly; sometimes it may be easy to suppress tics, while other times it may be nearly impossible to suppress them.
Myth: All people with TS swear and use obscene language.
Less than 20 percent of people diagnosed with TS involuntarily swear and use obscene language (called coprolalia). It is very likely that the prevalence is even lower than this estimate, since many mild cases of TS are undiagnosed. Most people with TS who do have this symptom mask the offensive words.
Myth: TS is more common among certain ethnic groups than others.
Tourette syndrome does not affect one racial or ethnic group more than another.
Myth: Children should not be told that they have TS when they are diagnosed since it might upset them.
Children who have TS already know they have a disorder. When they are given an explanation as to why their bodies are reacting a certain way, it helps them understand that they are ok and normal.
Myth: Having TS limits a person’s abilities.
TS only limits a person to the extent that the person believes he or she is limited. The major obstacle in having TS is not in dealing with the disorder but in dealing with the many behavioral symptoms that can accompany the disorder. Most people with TS lead productive lives, participate in normal activities and have rewarding careers.
Myth: People with TS are not as intelligent as others.
People with TS are as intelligent as people who do not have TS. However, about 25 percent of people with TS do have learning disabilities and require special educational assistance. When tics or associated learning disabilities interfere with a child’s academic performance or social acceptance, adjustments may need to be made in the child’s learning environment. All students with TS need an understanding environment that encourages them to work to their full potential but is flexible enough to accommodate their special needs.
- National Institute of Neurological Disorders & Stroke Tourette Syndrome Fact Sheet Accessed 8/12/2014.
- Tourette Syndrome Association. www.tsa-usa.org Accessed 8/12/2014.
- Ferri FF. Ferri's Clinical Advisor 2015, 5 Books in 1, Expert Consult - Online and Print. Mosby; 2014.
- Olanow C, Schapira AV. Chapter 372. Parkinson's Disease and Other Movement Disorders. In: Longo DL, Fauci AS, Kasper DL, Hauser SL, Jameson J, Loscalzo J. eds. Harrison's Principles of Internal Medicine, 18e. New York, NY: McGraw-Hill; 2012. library.ccf.org Accessed 8/12/2014.
- Bitsko RH, Holbrook JR, Visser SN, Mink JW, Zinner SH, Ghandour RM, Blumberg SJ. A national profile of Tourette syndrome, 2011-2012. J Dev Behav Pediatr. 2014 Jun;35(5):317-22.
- Williams NR and Okun MS. Deep brain stimulation (DBS) at the interface of neurology and psychiatry. The Journal of Clinical Investigation. 2013;123(11):4546–4556.
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