Author: Howard S. Schub, MD, retired
Reviewed: May 2021
SUMMARY
Tourette syndrome (TS) is a neuropsychiatric disorder that:
- Causes motor and vocal tics
- Waxes and wanes over time
The severity can vary from mild and non-disabling to severe and disabling. It is diagnosed by symptoms. It is not diagnosed through X-rays or lab tests. Treatments for TS vary. They can involve medications and/or behavior treatments. The prognosis for TS is generally good. TS tends to improve or resolve as a child grows.
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Disorder Overview
DESCRIPTION
Tourette syndrome is characterized by involuntary movements and noises/words. These are known as motor and vocal tics. With difficulty, someone with TS may be able to suppress tics for a time.
The following characteristics define Tourette syndrome:
Two types of tics
At least one type of vocal tic
Not caused by another medical condition
SIGNS AND SYMPTOMS
Tourette syndrome can include a wide variety of tics. Here are some of the most common types.
Simple motor tics:
- Eye blinking
- Facial grimacing
- Head jerking
- Shoulder shrugging
- Arm thrusting
Complex motor tics:
- Hopping
- Touching
- Tapping
- Twirling
- Eye rolling
Simple vocal tics:
- Throat clearing
- Coughing
- Spitting
- Grunting
- Sniffing
Complex vocal tics:
- Uttering words or phrases like “shut up”
- Uttering unacceptable obscene words (coprolalia)
- Repeating others’ words (echolalia)
Several other psychiatric and behavioral disorders are associated with TS.
These include:
- Attention deficit hyperactivity disorder (ADHD)
- Obsessive compulsive disorder (OCD)
- Learning disabilities
- Anxiety
- Emotional swings
CAUSES
The causes of Tourette syndrome are complex. Research on its causes focuses on several areas.
Genetics
TS runs in families. TS and its symptoms seem to pass from parent to child. TS, tics and other symptoms are more prevalent in children who have parents with these symptoms. Some scientific theories suggest that the genes involved in TS and its symptoms are also responsible for the sex differences. In other words, these genes may be related to the biologic differences between girls and boys.
Boys are:
- More likely to have tics
- More likely to have associated conditions such as ADHD and ODD
Girls are:
- Less likely to have tics
- More likely to have associated conditions such as anxiety and OCD
Multiple genes are probably involved. Not everyone who inherits the genes for TS will show symptoms, though. The overall risk for a parent, child, or sibling having TS is between 5% and 15%.
Neuroanatomy
Neuropharmacology
Neuroimmunology
Some neuroscientists believe that TS can be triggered by an autoimmune response after a childhood infection. They have observed that sometimes, after an infection, the immune system seems to behave differently. This pattern is called PANDAS. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. However, researchers have not figured out how PANDAS actually works. PANDAS remains a controversial subject.
LABORATORY AND IMAGING INVESTIGATION
Laboratory testing and imaging is often used to examine the brain. An MRI (magnetic resonance image) and an EEG (electroencephalogram) are examples.
However, in TS, results from these procedures usually come back normal. They are not needed to establish TS.
TREATMENT AND THERAPIES
Deciding whether or not to treat Tourette syndrome depends on several factors. A child may not require treatment if:
- Symptoms are not interfering with the child’s normal daily functioning
- Symptoms wax and wane quickly
- Symptoms are improving with age
For those with more severe symptoms, treatment needs to be comprehensive. It will likely involve education, behavioral intervention, and medication. It is useful to understand these treatment options and discuss them with a physician.
Education
Learning what to expect from TS can help children and their families feel less worried. It can be helpful and relieving to learn that:
- Tics tend to improve later in life
- Symptoms often wax and wane
- Tics can increase with stress and fatigue
The Tourette Syndrome Association is a helpful educational resource.
Behavioral Intervention
There are several options for behavioral intervention:
- Comprehensive Behavioral Intervention for Tics (CBIT). CBIT includes habit reversal therapy (or HRT). It also includes training that can prevent stress from triggering tics.
- Psychotherapy. Psychotherapy can help treat conditions associated with Tourette syndrome, such as ADHD and OCD.
Medication
Not every child with Tourette syndrome will need medication for tics. There is no medicine cure for TS.
Sometimes, the associated disorders are more impairing than the tics themselves. In these cases, the associated disorders may be treated instead. Treating them may even improve tic severity.
There is no one medication helpful to all children with TS. However, below are some of the types of medication used for tic suppression.
- Alpha Adrenergic Agonists. These medications are marketed to control high blood pressure. However, they are effective for tics. For most children, both the benefits and the side effects are modest.
- Antipsychotics. These are the most effective class of medication to treat tics. They work by decreasing dopamine functioning. Side effects can include weight gain, diabetes, and increased breast tissue. If they are used for a long period of time, these medicines can cause tardive dyskinesia, which are abnormal and involuntary body movements.
- Other medications. A variety of other medications can help:
-
- Anti-anxiety or anti-seizure medicines
- Medicines for other movement disorders
- Nicotine
- Cannabidiol (CBD)
Deep Brain Stimulation
In rare cases, patients are severely disabled by TS. These individuals may not improve using standard approaches. In these cases, surgery can be an option. One such surgery is deep brain stimulation, or DBS. DBS has been used to treat other movement disorders. It is used more frequently in adults. In children, it is still investigational. It needs to be investigated further. It should be used only at centers with expertise in the procedure.
OUTLOOK
The prognosis for Tourette syndrome in children is generally good. Most are able to function independently as adults, even if they still have tics.
TS can affect social interaction with peers and adults. However, tics are involuntary, so teachers and others should be supportive and provide accommodations.
Resources
Tourette Association of America
Founded in 1972, the Tourette Association of America (formerly known as the Tourette Syndrome Association) is the only national organization serving the community, and works to raise awareness, advance research, and provide ongoing support to patients and families impacted by Tourette syndrome and Tic disorders. To this end, the TAA directs a network of 31 Chapters, 83 support groups and recognizes 18 Centers of Excellence across the country. The TAA is a nonprofit 501(c)(3) organization.
Publications
JCN: Updates on Tics and Tourette’s Syndrome
Podcast from SAGE Neuroscience and Neurology/Journal of Child Neurology (JCN). Dr. Alison Christy talks to Dr. Jaclyn Martindale, assistant professor and director of the Pediatric Movement Disorders Clinic and Comprehensive Tourette Syndrome and Tic Disorder Clinic at Atrium Health Wake Forest Baptist.
Child Neurology Foundation (CNF) solicits resources from the community to be included on this webpage through an application process. CNF reserves the right to remove entities at any time if information is deemed inappropriate or inconsistent with the mission, vision, and values of CNF.
Research
ClincalTrials.gov for Tourette syndrome for children and adolescents are clinical trials that are recruiting or will be recruiting. Updates are made daily, so you are encouraged to check back frequently.
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. This is a resource provided by the U.S. National Library of Medicine (NLM), which is an institute within the National Institutes of Health (NIH). Listing a study does not mean it has been evaluated by the U.S. Federal Government. Please read the NLM disclaimer for details.
Before participating in a study, you are encouraged to talk to your health care provider and learn about the risks and potential benefits.
Family Stories
The Tourette Association of America (TAA) shares Stories that Inspire. These are the voices of inspiration from the Tourette Community. TAA also highlights Living with Tourette Syndrome: Teens. You can meet teens from around the country who share their experiences – both challenging and empowering. And if you’re interested in helping others find hope and inspiration through your personal experiences, please submit your story to the Tourette Association of America.
The information in the CNF Child Neurology Disorder Directory is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. Content provided is for informational purposes only. CNF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options.
References
Jankovic J. Treatment of tics associated with Tourette syndrome. J Neural Transm. 2020 May;127(5):843–50. https://doi.org/10.1007/s00702-019-02105-w
Singer HS. Treatment of tics and Tourette syndrome. Curr Treat Options Neurol. 2010 Nov;12(6):539–61. https://doi.org/10.1007/s11940-010-0095-4
Kurlan R. Tourette’s Syndrome. N Engl J Med. 2010 Dec 9;363(24):2332–8. https://doi.org/10.1056/NEJMcp1007805
Kurlan RM. Treatment of Tourette syndrome. Neurotherapeutics. 2014 Jan;11(1):161–5. https://doi.org/10.1007/s13311-013-0215-4
Schrock LE, Mink JW, Woods DW, Porta M, Servello D, Visser-Vandewalle V, et al. Tourette syndrome deep brain stimulation: A review and updated recommendations: Tourette Syndrome DBS Guidelines. Mov Disord. 2015 Apr;30(4):448–71. https://doi.org/10.1002/mds.26094
Jimenez-Shahed J. Medical and surgical treatments of Tourette syndrome. Neurologic Clinics. 2020 May;38(2):349–66. https://doi.org/10.1016/j.ncl.2020.01.006