Answers to questions families often have about caring for their child with Tourette syndrome

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.

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.

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

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 Tourette Syndrome, prognosis section.

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.

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.

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.

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].

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).