Get More Help in UtahTourette Syndrome
Overview
Tourette syndrome (TS) is a type of tic disorder characterized by waxing and waning motor and phonic tics lasting over a year (although not necessarily at the same time). Chronic tic disorders – chronic motor tic disorder, chronic vocal tic disorder, and TS – are differentiated by the types of tics (motor, phonic, or both). Because the distinctions among TS and the other two are generally accepted as artificial, the term TS will be used to refer to all of them in the following discussion. Chronicity (lasting a year or more) distinguishes TS from provisional tic disorder, the duration of which is less than 1 year (determined retrospectively or currently).
In TS, motor and phonic tics range in their expression from simple to complex. Simple motor tics are brief and involve an isolated muscle group, such as an eye blink, while complex motor tics appear more purposeful, such as the holding of a posture or moving multiple muscle groups in sequence to jump or twirl. Complex motor tics may include copropraxia, involving vulgar gestures or other socially inappropriate actions, such as suddenly reaching for or touching another person inappropriately.
Simple phonic tics involve sudden meaningless noises, such as sniffing or grunting, while complex phonic tics sound language-based, such as echolalia (repeating vocalizations made by another person) or coprolalia (uttering socially inappropriate language). Despite frequent media portrayal, copropraxia and coprolalia are uncommon among people with TS.
By adolescence, most people with TS can describe an uncomfortable physical sensation or urge that precedes a tic. The performance of the tic or tics temporarily reduces this urge. Although most individuals with TS are able to suppress their tics temporarily, the urges usually persist and build, becoming so intolerable that the tics are ultimately expressed. Stress, anxiety, excitement, and fatigue may increase tic frequency and intensity.
Tic disorders reflect a complex underlying ‘leaky filtering’ of sensory inputs or ‘disinhibition,’ characterized by inconsistent ability to inhibit certain thoughts, emotions, or behaviors. 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, or sudden excessive outbursts of anger. Signs and symptoms of these comorbid conditions can precede, co-occur with, or follow the onset of tics. These conditions usually pose a greater risk to the neuro-developmental, psychosocial, and behavioral well-being of the child than the tics alone pose. Adverse consequences of TS on self-esteem, academic performance, and social flexibility are common and can be profound.
Many lines of evidence link TS with pathways between the prefrontal cortex, the thalamus, and the basal ganglia and changes in the distribution and activity of the neurotransmitter dopamine. For example, medications that decrease tics (including the antipsychotics haloperidol and pimozide) are known to alter traffic through these pathways, and data from functional imaging of individuals with TS support these neurophysiological mechanisms. [Butler: 2006] Also, deep brain stimulation to specific suspected brain regions appears helpful in some people with refractory TS. [Bajwa: 2007]
Other Names & Coding
F95.0, Transient tic disorder
F95.1, Chronic motor or vocal tic disorder
F95.2, Tourette's disorder
F95.8, Other tic disorder
F95.9, Tic disorder, unspecified
For differentiation among the codes, see ICD-10 for Tic Disorders (icd10data.com).
Prevalence
Genetics
Prognosis
Practice Guidelines
Pringsheim T, Okun MS, Müller-Vahl K, Martino D, Jankovic J, Cavanna AE, Woods DW, Robinson M, Jarvie E, Roessner V, Oskoui
M, Holler-Managan Y, Piacentini J.
Practice guideline recommendations summary: Treatment of tics in people with Tourette syndrome and chronic tic disorders.
Neurology.
2019;92(19):896-906.
PubMed abstract / Full Text
Roles of the Medical Home
Keeping a Care Notebook can help families maintain continuity of care. Ongoing education and support for the child, family, peers, and educators are critical. The Tourette Association of America has a Youth Ambassador Program (Tourette Association) and provides explanations of protections under the Individuals with Disability Education Act (IDEA) and "Section 504" of the Americans with Disabilities Act. Parents may also find helpful information about school services and laws in the Portal's Education and Schools family's section. Effective child advocacy and self-advocacy depend on positive regard and solid self-esteem.
Clinical Assessment
Overview
Pearls & Alerts for Assessment
Tic occurrenceTics wax and wane over time and emotional states can influence tics.
Severity‘Tic severity’ is not a single thing but is determined by several features (number, intensity, frequency, complexity, functional interference, and distress).
Co-existing conditionsExpect 1 or more co-existing non-tic conditions (e.g., ADHD, OCD, academic difficulties, anger outbursts, anxiety). Their presence is the rule rather than the exception.
Screening
For Complications
- ADHD (~50%) - for screening tools, see Attention-Deficit/Hyperactivity Disorder (ADHD)
- OCD (~30%)
- Anxiety (~30%) - for screening tools, see Anxiety Disorders
- Learning problems (~20%)
- Sleep problems
- Depression - for screening tools, see Depression
- Anger control difficulty
- Autistic disorder
Presentations
Diagnostic Criteria
- Both multiple motor and 1 or more vocal tics have been present at some time, although not necessarily concurrently (a tic is a sudden rapid, recurrent, nonrhythmic motor movement or vocalization)
- Tic frequency may wax and wane but have persisted for more than 1 year since first tic onset
- Onset is before age 18 years
- Disturbance is not attributable to the physiological effects of a substance (e.g., cocaine) or another medical condition (e.g., Huntington's disease, post-viral encephalitis).
Differential Diagnosis
The following are relatively common co-occurring conditions:
- Stereotypies are repetitive, rhythmic, soothing movements, postures, or utterances. Although they are often seen in children with autism spectrum disorder, they are also very common in typically developing children. Stereotypies usually emerge prior to 3 years of age. Examples include hand-flapping, rocking, and twirling. Among children with communication limitations, stereotypies and complex tics may be indistinguishable.
- Habits share features with stereotypies but typically are not rhythmic or soothing and may be quick behaviors that can be reinforced through repetition. Examples include nail-biting and lip-licking.
- Compulsions are very similar to tics and sometimes difficult to distinguish from complex tics. Compulsions usually are responses to obsessive thoughts (i.e., irrational fears of an adverse outcome), whereas tics usually are responses to sensory experiences.
- Seizures: Generalized seizures are accompanied by a loss of consciousness, while complex partial seizures are associated with alterations in consciousness and responsiveness. Some partial seizures could be mistaken for tics, but these are generally not suppressible and are not preceded by a premonitory urge. Eyelid flickering (myoclonus) seen with absence seizures could resemble tics, but in absence seizures, there is loss of consciousness, no ability to suppress the seizure, and no premonitory urge. For clarification, truly involuntary myoclonic jerks are not stereotyped and can be seen in association with juvenile myoclonic epilepsy.
- Substance exposure: Neuropsychiatric medications are unlikely to cause tics, but they can be associated with other movement problems, such as restlessness. Stimulant medications do not cause tics; in a fraction of patients, the medication exacerbates them. Tics have been reported with carbamazepine and rarely other medications. Prolonged use of some neuroleptics may result in tardive dyskinesia, a neurologic syndrome with a variety of repetitive purposeless movements that may appear tic-like. Movements may occur in the extremities, as well as the face and could include lip-smacking, grimacing, and rapid eye-blinking. Medication adjustments are usually necessary when tardive dyskinesia is noted.
- Muscle spasms, such as blepharospasms or spasmodic torticollis, may be confused with TS, but the characteristics of tics in TS should allow differentiation.
- Sydenham chorea is a neurological disorder of childhood resulting from an autoimmune reaction to infection group A beta-hemolytic Streptococcus (GABHS), which also causes rheumatic fever. This condition is characterized by involuntary movements of the face, arms, and legs, clumsiness, emotional volatility, difficulty concentrating, and no premonitory urge. Sydenham chorea is typically seen in children 5-15 years old. Of note, tics may also be present. It affects girls more than boys and may appear from several weeks to many months after strep infection. There is no treatment; the chorea usually resolves after weeks to months. Symptomatic management of chorea is rarely necessary.
- Post-viral encephalitis: This brain-based inflammation is differentiated from tics by medical history and examination. As is the case for Syndenham chorea, tics may also be present.
- Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is a controversial condition postulated as either 1) a dramatic increase in symptoms in children already known to have tics or OCD or 2) an appearance of such symptoms in children without prior history, following a GABHS infection, other infection, or non-infectious suspected causes. [Blackburn: 2018] PANS – or pediatric acute-onset neuropsychiatric syndrome – has been coined as a broader term to include other infectious and non-infectious suspected causes. [Wilbur: 2019] No diagnostic criteria are uniformly accepted as definitive for this hotly debated condition. There is quite a bit of intrigue and controversy, and research is ongoing. [Chang: 2015]
- Stroke, although very uncommon in children, can precede and presumably cause onset of tics.
- Wilson disease is an autosomal recessive genetic disorder that prevents the body from disposing of extra copper. As copper levels build in the brain, tremor and tic-like movements, including dystonia, chorea, or ataxia may emerge. Incoordination of speech, swallowing, and gait, and behavioral changes can also occur. If the liver is also involved, jaundice, ascites, and other systemic symptoms may be present. Physical exam findings also include Kayser-Fleischer rings due to copper accumulation in the eye. Laboratory findings show decreased copper and ceruloplasmin levels in the blood, increased urinary excretion of copper, and copper accumulation in the liver. Since Wilson disease is treatable, there should be a low threshold for medical screening for this disorder.
Comorbid & Secondary Conditions
| ADHD (~50%) | Fine motor coordination difficulty |
| Obsessions and Compulsions (>50%) | Specific learning disability (~ 20%) |
| Anxiety (~30%) | Autism spectrum disorder |
| Depression | Sleep problems |
| Anger control difficulty | Executive function difficulties |
History & Examination
Current & Past Medical History
Family History
Pregnancy/Perinatal History
Developmental & Educational Progress
Social & Family Functioning
Physical Exam
TS is rarely associated with specific physical examination findings; however, in certain cases, repetitive behaviors can result in findings specific to the tic as detailed below.
General
Vital Signs
Growth Parameters
Note baseline and subsequent weights since medications used for TS or co-occurring conditions may be associated with weight change.
Skin
HEENT/Oral
Dental trauma (enamel wear, flattening of occlusal surfaces) associated with tooth-chomping
Testing
Sensory Testing
Genetic Testing
Other Testing
Specialty Collaborations & Other Services
Tourette Syndrome Programs (see UT providers [1])
Mental Health/Counseling > … (see UT providers [841])
Educational Testing/Assessment (see UT providers [5])
58 KB).
Developmental - Behavioral Pediatrics (see UT providers [9])
Psychiatry/Medication Management (see UT providers [53])
Neuropsychiatry/Neuropsychology (see UT providers [6])
Pediatric Neurology (see UT providers [8])
Treatment & Management
Overview
Pearls & Alerts for Treatment & Management
Co-existing conditionsThe vast majority of patients with Tourette syndrome and other chronic disorders also have one or more non-tic co-existing conditions, about which concerns usually outweigh those related to problems and interferences associated with tics.
Need for ongoing surveillance/screeningSurveillance and periodic screening for tics and associated co-existing conditions (for example, learning disabilities, anxiety disorders, substance abuse disorders) is an ongoing process, as symptoms emerge over time.
Understand patient/family prioritiesClinicians and families often have different opinions about the importance of tic or related symptoms. Clear and effective communication will help to prioritize problems and guide management.
Systems
Neurology
When tics are mild and not disabling, education about the condition and supportive counseling may suffice. Since tics wax and wane in TS, watchful waiting can be the best approach for some. When tics are disabling due to their impact on social, educational, or other domains, treatment options include comprehensive behavioral intervention for tics and/or pharmacotherapy. Medication remains the treatment of choice for tics of greater severity.
Comprehensive behavioral intervention for tics (CBIT) – not to be confused with cognitive behavioral therapy (CBT) – has been shown to be as effective as pharmacotherapy in reducing tic behaviors in both children and adults. [Pringsheim: 2019] The best candidates are those who recognize their premonitory sensations and are motivated to reduce their tics. CBIT combines Habit Reversal Training and Functional Analysis and can be used alone or with medication. Other behavioral approaches have either not been adequately assessed or have not shown efficacy. Families may be interested in learning more at CBIT: Information for Patients (Tourette Association).
Deep brain stimulation (DBS) is a neurosurgical approach typically reserved for adult patients with severe tics that pose substantial impairment to quality of life or threaten personal safety and who have not responded adequately to comprehensive medication, psychological, and behavioral interventions. In rare cases, DBS may be considered for select pediatric and adolescent patients after thorough investigation with a local ethics committee and/or institutional review board. [Deeb: 2019] [Schrock: 2015]
Transcranial magnetic stimulation (TMS) has also been explored as a treatment option. [Grados: 2018] A decision tree for management of TS can be found at Management Decision Tree (European Society for the Study of TS).
Specialty Collaborations & Other Services
Specialists within child neurology, child psychiatry, or developmental pediatrics likely have experience managing TS; the degree for each will vary by individual. For the child with severe TS and/or associated problems, co-management with a TS expert may be helpful.
Tourette Syndrome Programs (see UT providers [1])
Developmental - Behavioral Pediatrics (see UT providers [9])
Psychiatry/Medication Management (see UT providers [53])
Pediatric Neurology (see UT providers [8])
Pharmacy & Medications
16 KB), are easier to use
in the medical home setting. Each has pros and cons that are described in
[Martino: 2017].Most medications used for tic reduction are prescribed "off-label." The only ones approved by the US Food and Drug Administration for treatment of tics in TS are the typical neuroleptics haloperidol and pimozide and aripiprazole, an atypical neuroleptic. [Silay: 2005] [Sallee: 1997] [Sallee: 2017] Those, however, are generally not used as first-line therapy because of potential adverse side effects, including tardive dyskinesia – a rare but permanent movement disorder that particularly involves the mouth.
Treatment with medications requires a trial and error approach with frequent clinical visits to assess response and titrate dosage. A provider with expertise in tic management is preferable. Medication trials should be conducted over weeks to months to account for waxing and waning tics. In general, start medications at small doses and increase gradually. Any benefits gained with medications should be weighed against current and potential side effects. When medications for tics are to be discontinued, most should be weaned over time, and only under provider guidance.
Alpha-2 adrenergic agonists (clonidine and guanfacine) are often the first choice because their side effects are more tolerable than those of other drug classes and do not include tardive dyskinesia. However, these agents may take weeks or longer to decrease tics, and the reduction is less certain and often less robust than with other agents. Sedation is the most likely side effect of these medications, especially the short-acting forms.
The short-acting forms, which may need to be given 3-4 times a day, can be used initially to assess tolerability and then switched to a long-acting preparation. Oral long-acting forms are available for clonidine and guanfacine; clonidine is available as a transdermal patch. The latter needs to be changed only once a week and produces less sleepiness than the oral form, but local allergic reactions are common. Guanfacine has a longer half-life and is reportedly less sedating than clonidine.
Beneficial side effects of these agents may include the reduction of hyperactive and impulsive behaviors associated with ADHD and reduced latency to sleep onset in patients with difficulty getting to sleep.
Neuroleptics are usually reserved for more severe tics. Although they work well, no medication is successful in all people at doses that don't cause some side effects. Medications should be started at small doses that are increased gradually as needed while watching for side effects. The most common side effects are sedation and weight gain, but neurologic side effects, such as Parkinson-like symptoms and tremor, are also possible. Although dystonic reactions are rare, families should be warned about them. Atypical neuroleptics pose a risk for development of insulin resistance and diabetes – periodic laboratory monitoring is required.
The typical neuroleptics haloperidol and pimozide and the atypical aripiprazole are approved for use by the FDA. [Silay: 2005] [Sallee: 1997] Among atypicals, risperidone and olanzapine have been shown to be effective. [Sandor: 2003] [Budman: 2001] [Bruun: 1996] After long-term use, neuroleptics need to be discontinued slowly to avoid withdrawal problems that may include a rebound in tic frequency and tardive dyskinesia.
Botulinum toxin (Botox) is most helpful when the patient has a severe, localized tic, such as in the face or neck. It is injected by an experienced practitioner into the affected muscle groups. The therapeutic effect lasts for several months.
Anti-epileptic drugs (topiramate in particular) may be useful in reducing tic severity; however, potential side effects are important to consider, particularly at higher doses. [Yang: 2013]
Benzodiazepines, antispasmodic agents (baclofen), dopamine agonists (pergolide), and tetrabenazine are also considered options for treatment of tics. The research on each of these agents is variable; until more thorough research is undertaken, available evidence for the use of these agents is limited.
Genetics
Specialty Collaborations & Other Services
Tourette Syndrome Programs (see UT providers [1])
Pediatric Neurology (see UT providers [8])
Mental Health/Behavior
Attention-Deficit/Hyperactivity Disorder (ADHD) is the most commonly occurring comorbid condition. The presence of tics should not affect a choice among standard treatment modalities – stimulant medications are unlikely to influence tic behavior. Families should know that the course of tics is unpredictable and a waxing of tics while on stimulant medication could falsely suggest they are the cause. [Tourette's: 2002] [Erenberg: 2005] Although the alpha-2 adrenergic agonists clonidine and, less so, guanfacine may be helpful for the treatment of ADHD symptoms in those with TS, these medications are usually not as effective as stimulants and take weeks to months to show beneficial effects. The alpha-2 agonists may, however, help decrease the frequency and intensity of tics in some patients, reduce hyperactive and impulsive behaviors in children with co-occurring ADHD, and, when taken in the evening, assist with reducing sleep onset latency.
Children with obsessive-compulsive disorder (OCD) and tics may not respond as well as those without tics to selective serotonin reuptake inhibitors, but both groups respond similarly to cognitive behavioral therapy (CBT) for OCD symptoms. CBT is the recommended first-line treatment of OCD in individuals with tic disorders. [Pringsheim: 2019]
Specialty Collaborations & Other Services
Psychiatry/Medication Management (see UT providers [53])
General Counseling Services (see UT providers [302])
Learning/Education/Schools
Complementary & Alternative Medicine
Ask the Specialist
Why do children with TS sometimes shout obscenities and ethnic slurs?
Coprolalia 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.
What do tics feel like?
There is often a premonitory sensation that individuals feel prior to a tic behavior. Though this sensation differs across individuals (and even across different tic types), it is often described as a pressure-like sensation or an ‘itch’ in the muscle group where the tic occurs that may build over time. A specific example everyone is familiar with is the sensation that builds up in the eyelids when holding back a blink, and the subsequent relief after blinking is similar to the relief that occurs after performing a tic.
What is the difference between a tic and a motor stereotypy?
Both tics and motor stereotypies are technically “stereotyped,” which is to say that the behavior is performed in a similar way again and again. Motor stereotypies are sustained and repetitive movements that are rhythmic, generally emerge in the toddler years, do not have a premonitory urge, are pleasurable, and typically do not change over time. Tics, in contrast, occur in bouts but are not sustained, are not rhythmic, generally emerge later in childhood, start with a premonitory sensation that drives a tic, are unpleasant (but are followed by relief), and tend to change in type over time.
Resources for Clinicians
On the Web
Tourette Disorder (OMIM)
Information about clinical features, diagnosis, management, and molecular and population genetics; Online Mendelian Inheritance
in Man, authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine
Gilles de la Tourette Syndrome (NIH)
Database search that gives links to abstracts, full-text journals, books, and reports about TS; National Institutes of Health.
Tools for Medical Practitioners (TAA)
Detailed information about comprehensive behavioral intervention for tics (CBIT) and deep brain stimulation, as well as a
Resource Library; from the Tourette Association of America.
Helpful Articles
PubMed search for Tourette syndrome in children, last 2 years.
Deng H, Gao K, Jankovic J.
The genetics of Tourette syndrome.
Nat Rev Neurol.
2012;8(4):203-13.
PubMed abstract
Zinner SH, Mink JW.
Movement disorders I: tics and stereotypies.
Pediatr Rev.
2010;31(6):223-33.
PubMed abstract
Pringsheim T, Holler-Managan Y, Okun MS, Jankovic J, Piacentini J, Cavanna AE, Martino D, Müller-Vahl K, Woods DW, Robinson
M, Jarvie E, Roessner V, Oskoui M.
Comprehensive systematic review summary: Treatment of tics in people with Tourette syndrome and chronic tic disorders.
Neurology.
2019;92(19):907-915.
PubMed abstract / Full Text
Clinical Tools
Assessment Tools/Scales
Tic Severity Checklist ( 16 KB)
An easy-to-use tic severity scale for keeping an accurate record of the type and frequency of tics. Useful for assessing the
need for and response to medications. This checklist can be downloaded for family use.
Letters of Medical Necessity
Preauthorization Letter for Psychological Testing ( 58 KB)
A sample letter requesting preauthorization for neuropsychological testing to help identify strengths, weaknesses, and possibly
mood disorders in a child with Tourette syndrome.
Tourette Syndrome / Neuropysch Testing - Letter of Medical Necessity / Preauthorization (
17 KB)
Toolkits
Managing Tourette & Tic Disorders ( 5.8 MB)
Comprehensive, 16-page guide to treatment for providers; from the Tourette Association of America.
Other
VISIT-TS (Video-Integrated Screening Instrument for Tics and Tourette Syndrome)
Multimedia tool intended to demonstrate tics to a lay audience.
Patient Education & Instructions
Living with Tourette & Tic Disorders (Tourette Association) ( 7.5 MB)
An 18-page, free booklet that can serve as a starting point for patients and families affected by a new diagnosis of TS;
from the Tourette Association of America.
Newly Diagnosed with Tourette Seminar
Presented by Dr. John Walkup, MD, Division of Adolescent and Child Psychiatry at Cornell Weill Medical College (4 part series).
‘I Have Tourette’s, But Tourette’s Doesn’t Have Me’
Documentary produced in collaboration with the Tourette Syndrome Association
Managing Tourette Syndrome: Behavioral Interventions, Parents Workbook
A 96-page, behavioral intervention workbook for children and adults with tic disorders; written by Douglas W. Woods: link
to the publisher's web site, available from local and online bookstores.
Resources for Patients & Families
Information on the Web
Genetic Conditions: Tourette Syndrome (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources;
from the National Library of Medicine.
CBIT: Information for Patients (Tourette Association)
Information about the effectiveness and application of CBIT; from the Tourette Association of America.
Tourette Syndrome - Getting Help at School (Tourette Association)
Advice on how to help your child at school and help your school best serve your child, includes a sample letter requesting
evaluation; from the Tourette Association of America.
National & Local Support
Tourette Association of America
Information regarding the diagnosis and treatment of TS, as well as research, educational concerns, and much more.
Studies/Registries
Children with Tourette Syndrome (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.
Services for Patients & Families in Utah (UT)
| Service Categories | # of providers* in: | UT | NW | Other states (3) (show) | | NM | NV | RI |
|---|---|---|---|---|---|---|---|---|
| Developmental - Behavioral Pediatrics | 9 | 1 | 2 | 3 | 12 | |||
| Educational Testing/Assessment | 5 | 3 | 1 | 2 | ||||
| General Counseling Services | 302 | 1 | 10 | 207 | 30 | |||
| Mental Health/Counseling | 841 | 51 | 157 | 733 | 275 | |||
| Neuropsychiatry/Neuropsychology | 6 | 1 | 3 | 9 | ||||
| Pediatric Neurology | 8 | 5 | 5 | 17 | ||||
| Psychiatry/Medication Management | 53 | 3 | 38 | 80 | ||||
| Tourette Syndrome Programs | 1 | 1 | 1 | 1 | 1 | |||
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
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Comprehensive systematic review summary: Treatment of tics in people with Tourette syndrome and chronic tic disorders.
Neurology.
2019;92(19):907-915.
PubMed abstract / Full Text
Pringsheim T, Okun MS, Müller-Vahl K, Martino D, Jankovic J, Cavanna AE, Woods DW, Robinson M, Jarvie E, Roessner V, Oskoui
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Practice guideline recommendations summary: Treatment of tics in people with Tourette syndrome and chronic tic disorders.
Neurology.
2019;92(19):896-906.
PubMed abstract / Full Text
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