Tourette Syndrome (cont.)

What is the prognosis for Tourette syndrome?

Although there is no cure for Tourette syndrome, the condition in many individuals improves in the late teens and early 20s. As a result, some may actually become symptom-free or no longer need medication for tic suppression. Although the disorder is generally lifelong and chronic, it is not a degenerative condition. Individuals with Tourette syndrome have a normal life expectancy. Tourette syndrome does not impair intelligence. Although tic symptoms tend to decrease with age, it is possible that neurobehavioral disorders such as depression, panic attacks, mood swings, and antisocial behaviors can persist and cause impairment in adult life.

What is the best educational setting for children with Tourette syndrome?

Although students with Tourette syndrome often function well in the regular classroom, ADHD, learning disabilities, obsessive-compulsive symptoms, and frequent tics can greatly interfere with academic performance or social adjustment. After a comprehensive assessment, students should be placed in an educational setting that meets their individual needs. Students may require tutoring, smaller or special classes, and in some cases special schools.

All students with Tourette syndrome need a tolerant and compassionate setting that both encourages them to work to their full potential and is flexible enough to accommodate their special needs. This setting may include a private study area, exams outside the regular classroom, or even oral exams when the child's symptoms interfere with his or her ability to write. Untimed testing reduces stress for students with Tourette syndrome.

What research is being done for Tourette syndrome?

Within the Federal government, the leading supporter of research on Tourette syndrome and other neurological disorders is the National Institute of Neurological Disorders and Stroke (NINDS). The NINDS, a part of the National Institutes of Health (NIH), is responsible for supporting and conducting research on the brain and central nervous system.

NINDS sponsors research on Tourette syndrome both in its laboratories at the NIH and through grants to major medical institutions across the country. The National Institute of Mental Health, the National Center for Research Resources, the National Institute of Child Health and Human Development, the National Institute on Drug Abuse, and the National Institute on Deafness and Other Communication Disorders also support research of relevance to Tourette syndrome. And another component of the Department of Health and Human Services, the Centers for Disease Control and Prevention, funds professional education programs as well as Tourette syndrome research.

Knowledge about Tourette syndrome comes from studies across a number of medical and scientific disciplines, including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.

Genetic studies. Currently, NIH-funded investigators are conducting a variety of large-scale genetic studies. Rapid advances in the technology of gene finding will allow for genome-wide screening approaches in Tourette syndrome, and finding a gene or genes for Tourette syndrome would be a major step toward understanding genetic risk factors. In addition, understanding the genetics of Tourette syndrome genes will strengthen clinical diagnosis, improve genetic counseling, lead to the clarification of pathophysiology, and provide clues for more effective therapies.

Neuroimaging studies. Within the past 5 years, advances in imaging technology and an increase in trained investigators have led to an increasing use of novel and powerful techniques to identify brain regions, circuitry, and neurochemical factors important in Tourette syndrome and related conditions.

Neuropathology. Within the past 5 years, there has been an increase in the number and quality of donated postmortem brains from Tourette syndrome patients available for research purposes. This increase, coupled with advances in neuropathological techniques, has led to initial findings with implications for neuroimaging studies and animal models of Tourette syndrome.

Clinical trials. A number of clinical trials in Tourette syndrome have recently been completed or are currently underway. These include studies of stimulant treatment of ADHD in Tourette syndrome and behavioral treatments for reducing tic severity in children and adults. Smaller trials of novel approaches to treatment such as dopamine agonist and GABAergic medications also show promise.

Epidemiology and clinical science. Careful epidemiological studies now estimate the prevalence of Tourette syndrome to be substantially higher than previously thought with a wider range of clinical severity. Furthermore, clinical studies are providing new findings regarding Tourette syndrome and co-existing conditions. These include subtyping studies of Tourette syndrome and OCD, an examination of the link between ADHD and learning problems in children with Tourette syndrome, a new appreciation of sensory tics, and the role of co-existing disorders in rage attacks. One of the most important and controversial areas of Tourette syndrome science involves the relationship between Tourette syndrome and autoimmune brain injury associated with group A beta-hemolytic streptococcal infections or other infectious processes. There are a number of epidemiological and clinical investigations currently underway in this intriguing area.

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