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What is Tourette Syndrome?
Tourette Syndrome (TS) is a chronic, usually lifelong, neurobiologically-based, medical condition characterized by involuntary movements (motor tics) and sounds (vocal tics). Both motor and vocal tics must be present for at least one year for the diagnosis of TS to be made. TS typically appears during childhood, sometimes as early as age two, but usually during the early schoolage years (around age 7). It rarely begins after young adulthood.
Once thought to be rare, TS is now recognized as relatively common among inherited disorders. In its complete form it may affect up to 1 person in every 2,500, with perhaps 3 times that number showing partial expressions such as chronic motor tics, obsessive or compulsive traits, or problems with distractibility and hyperactivity.
TS is not a degenerative disorder; individuals with TS can expect to live a normal life span. Although the condition is lifelong and chronic, symptoms often become milder during the adult years. Most adults with TS live well-adjusted, productive lives. In some instances complete remission of symptoms occurs after adolescence.
In most cases, TS is a genetically-mediated biological disorder of brain development and function. However, the severity of this genetic expression varies greatly from one generation to another.
Symptoms
Virtually any muscle in the body may be involved in a motor tic. The most common motor tics are rapid, uncontrollable movements, such as eye blinks, facial grimaces or head jerks. Some tics are more complicated and may appear to be purposeful, such as repetitive grooming behaviors, jumping/dancing movements, touching or lip biting. Common vocal tics include throat clearing, coughing, sniffling, grunting or barking. The most socially disabling tics (which are very rare) involve repeating the words of other people (echolalia) or blurting out obscenities (coprolalia).
A variety of symptoms--obsessions, compulsions, attention deficits, impulsivity, hyperactivity, and learning disabililies--are commonly experienced by patients with TS. These symptoms may be an integral part of TS. (i.e.,they may be caused by the same genetic vulnerability that leads to tics.) For many patients, these associated symptoms may be more disabling than the tics themselves. Other symptoms, such as depression or anxiety, may represent responses to the social stresses associated with having TS.
Severity
The range of symptom severity varies widely among individuals. Those with mild TS have barely noticeable motor and vocal tics and may not experience any disability or handicap. However, individuals with severe and frequent symptoms may suffer some disability or impairment in functioning. Fortunately, it is estimated that only a small proportion of individuals with TS have symptoms that are severe enough to cause serious interference with their lives.
Tics usually become exacerbated during periods of stress, excitement or sleep deprivation. They generally improve when the patient is not anxious or is absorbed in an activity. In most instances tics abate during sleep. Patients with TS can sometimes control their tics for a short time, but eventually tension mounts, and the symptoms reappear.
Patient Evaluation
Effective treatment begins with a complete evaluation. Assessment of TS involves far more than simple diagnosis. Symptoms fluctuate in severity and may be suppressed for brief periods of time. As the patient becomes more comfortable with the clinician, there will be less likelihood of symptom suppression or inhibition. Only when there is confidence and trust in the clinician is the patient likely to display or acknowledge the most severe symptoms.
A thorough assessment includes an evaluation for obsessions or compulsions;a ttention-deficit, impulsivity and hyperactivity symptoms, and learning difficulties. When assessing children, it may be important to talk with school personnel. A complete assessment also includes a family history for tic symptoms, obsessions or compulsions, attention-deficit problems and learning difficulties.
Differential diagnosis is important to rule out other causes of abnormal movements, such as Wilson's disease or Sydenham's chorea. The neurological examination should include documentation of neuromaturational difficulties and other neurological findings. At this time there are no laboratory or neuroimaging studies that are helpful in the evaluation of TS.
Treatment
The first decision for the attending clinician is whether or not to treat. When treating a child, the primary emphasis must be on helping the youngster to successfully navigate normal developmental tasks--to feel competent in school, develop friendships, experience trust in parents, and enjoy life's adventures. If any of the patient's symptoms--tics, obsessions or compulsions, impulsivity, inattention, hyperactivity, learning disabilities, depression or anxiety--are interfering with the successful navigation of these developmental tasks, treatment is indicated.
Treatment usually begins with education about TS and reassurance that effective treatments are available. Pharmacological treatment may be targeted at tics, obsessions and compulsions, inattention/impulsivity, or some combination of these symptoms. Pharmacological treatment of children with TS often requires careful monitoring since most patients have an array of symptoms and the currently available medications have a range of side effects.
Children with attention and learning problems require educational intervention similar to approaches used in the treatment of other forms of attention-deficit hyperactivity disorder (ADHD) and learning disabilities. Depending on the severity of the school and associated behavioral problems, a TS patient may require special tutoring, a learning laboratory, a self-contained classroom, and, less commonly, a special school.
Although psychotherapy will not eliminate tics, it may be beneficial to some TS patients who require treatment of the psychological sequelae of this difficult illness. The inability to control one's own body and even one's own thoughts is often a great source of anxiety, guilt, fear, helplessness, anger, and depression.
Insurance coverage and reimbursement
Because the symptoms of TS are neurobiologically-based, and often comorbid with psychiatric disorders, patients with TS should expect their insurance to cover evaluation and treatment in a manner similar to that for any other medical condition.
The organizations listed below are concerned that some benefit plans do not provide adequate coverage for the children and adolescents with obsessive compulsive disorder (OCD). This document, endorsed by the organizations listed below, provides information on obsessive compulsive disorder and explains the impact and importance of covering treatment for this disorder.
AMERICAN ACADEMY OF CHILD AND ADOLESCENT PSYCHIATRY
AMERICAN ACADEMY OF NEUROLOGY
AMERICAN ACADEMY OF PEDIATRICS
AMERICAN ASSOCIATION FOR MARRIAGE AND FAMILY THERAPY
AMERICAN ASSOCIATION FOR PARTIAL HOSPITALIZATION
AMERICAN ASSOCIATION OF CHILDREN'S RESIDENTIAL CENTERS
AMERICAN ASSOCIATION OF PSYCHIATRIC SERVICES FOR CHILDREN
AMERICAN PSYCHIATRIC ASSOCIATION
ANXIETY DISORDERS ASSOCIATION OF AMERICA
CHILDREN AND ADULTS WITH ATTENTION DEFICIT DISORDERS
NATIONAL ALLIANCE FOR THE MENTALLY ILL
NATIONAL ASSOCIATION FOR RURAL MENTAL HEALTH
NATIONAL ASSOCIATION OF SOCIAL WORKERS
NATIONAL MENTAL HEALTH ASSOCIATION
NATIONAL ORGANIZATION OF RARE DISEASES
NATIONAL TREATMENT CONSORTIUM
OBSESSIVE COMPULSIVE FOUNDATION
TOURETTE SYNDROME ASSOCIATION
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999