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Tourette Syndrome

Introduction

Here you’ll find answers to some of the questions that parents often have about this condition. Additional resources are listed at the bottom of the page. Diagnosis and management information can be found in the Tourette Syndrome module, which is written for primary care clinicians but also may be of help to parents and family members.

What is Tourette syndrome and what causes it?

Tourette syndrome (TS) is a childhood-onset neurological condition with both motor and phonic (vocal) tics, although not necessarily at the same time, lasting for at least a year. Most people diagnosed with TS will also have one or more non-tic-associated conditions, including attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), anxiety, learning problems, sleep disorders, depression, and anger dysregulation. Onset of the signs and symptoms of these conditions can precede, co-occur with, or follow the onset of tics. These conditions usually pose greater risk to the neuro-developmental, psycho-social, and behavioral well-being of the child than do the tics.

What are the symptoms of Tourette syndrome?

The tics may involve movements in almost any body part, including neck twisting, blinking, shoulder shrugging, sniffing, throat clearing, hair flinging, twirling, and others. They typically first emerge between 4 and 7 years of age and, over time, may evolve from simple to complex and from just motor to motor and/or phonic. Associated behavioral or neurodevelopmental conditions may precede, occur with, or begin after the tics have emerged.

How is it diagnosed?

There is no diagnostic test to confirm TS. The diagnosis is made by history and by clinical exam.

What is the prognosis?

As children mature, many will show fewer symptoms of TS. Some will have no symptoms of TS as adults. More details can be found in the Medical Home Portal. See Clinical course and prognosis of Tourette syndrome.

What is the risk for other family members or future babies?

The cause of TS is poorly understood, although both genetic and environmental factors influence variations in the expression of the signs and symptoms of tics and associated conditions.

What treatments/therapies/medications are recommended or available?

Because tics wax and wane over time, a "wait and see" approach often makes sense. A minority of patients will require direct intervention for tic suppression. The Medical Home should assess the need for pharmacotherapy for tics and refer to specialists as needed. Children with TS and their families will have different thresholds for when they feel the tics should be treated based on comfort with the tics, family expectations, and the presence or absence of associated conditions. Associated conditions, such as ADHD and anxiety, will often cause the child more problems than the tics themselves and any child with TS should be evaluated for these conditions by a behavioral health professional.

How will my child and our family be impacted?

Parents of course worry about the impact of the tics with their child's friends, at school, and on their child's self-esteem. The attitude of the parents is important in how the child feels about himself and discussion with a local support group, your child's physician, or a counselor may be helpful for your child and/or you and your spouse.

Why do children with TS sometimes shout obscenities and ethnic slurs?

Coprolalia (involuntary swearing) occurs in fewer than 15% of people with TS. These symptoms appear to be due to an uncontrollable urge to "voice the forbidden," even when the person with TS does not feel anger. [Tourette: 2007].

Will my child with TS need special education?

Children with TS have the same IQ distribution as the entire population. However, special education support and accommodations may be helpful and indicated for children with the problems associated with TS, including attention and learning problems. See Educational information (TSA).

Resources

Information & Support

Where can I go for further information?

For Parents and Patients

Support

Tourette Association of America
Offers information about diagnosis and treatment of Tourette syndrome and state professional referral listings, and resources for patients and families.

General

Tourette Syndrome Association, Utah Chapter
Utah chapter of the TSA offering educational advocacy; family support and get togethers; and educational materials.

Tourette Syndrome (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; sponsored by the U.S. National Library of Medicine.

Gilles de la Tourette Syndrome (NIH)
Database search that gives links to abstracts, full text journals, books, reports and NCBI web about TS; National Institutes of Health.

Ask the expert newsletters (TSA)
Articles written by professionals that address questions about treatment, coping, and medical issues affecting people with TS and their families.

Genetics in Primary Care Institute (AAP)
The goal of this site is to increase collaboration in the care of children with known or suspected genetic disorders. Includes health supervision guidelines and other useful resources; a collaboration among the Health Resources & Services Administration, the Maternal and Child Health Bureau, and the American Academy of Pediatrics.

Patient Education

Tourette Syndrome "Plus"
Information for parents and patients about TS plus related disorders from Leslie Packer, Ph.D., a psychologist, spouse and a mother of children with TS. Includes sections on behavior and education

Services

Developmental Pediatrics

See all Developmental Pediatrics services providers (5) in our database.

Neuropsychology

See all Neuropsychology services providers (33) in our database.

Occupational Therapy, Pediatric

See all Occupational Therapy, Pediatric services providers (42) in our database.

Pediatric Neurology

See all Pediatric Neurology services providers (10) in our database.

Psychiatrist, Child-18

See all Psychiatrist, Child-18 services providers (28) in our database.

Psychologist, Child-18

See all Psychologist, Child-18 services providers (151) in our database.

For other services related to this condition, browse our Services categories or search our database.

Studies

Ongoing Studies on Tourette Syndrome (clinicaltrials.gov)
List of numerous studies focusing on TS; includes etiology, manifestations, and treatment studies.

Authors

Compiled and edited by: Lynne M Kerr, MD, PhD - 10/2012
URLEND Trainees, 2011-2012 - 10/2012
Content Last Updated: 10/2015

Funding/Support

The Medical Home Portal thanks the 2011-2012 URLEND Medical Home Portal trainees group for their contribution to this page.

Page Bibliography

Tourette Syndrome Association.
What is Tourette syndrome? and TS: Frequently Asked Questions.
Tourette syndrome association; (2007) http://www.tsa-usa.org/imaganw/What_is_TS_English.pdf. Accessed on 10/18/2015.
Basic information regarding the diagnosis of TS as well as information about the TS Association for individuals and families with TS