Tourette Syndrome - Treatment & Management

• Because the majority of children diagnosed with TS have co-morbid conditions, it is essential to consider their potential impact. Management should focus on areas of greatest consequence on social, academic, or other areas of function. Most often, the attention deficit hyperactivity disorder (ADHD), learning problems, obsessive compulsive disorder (OCD), anxiety, anger dysregulation, and/or other comorbid conditions warrant first consideration.
• With appropriate information, most children and families will choose not to treat tics.
• Any benefits of medications need to be weighed against potential side effects.
• Most medications used for tic reduction are prescribed "off-label."
• Tics tend to wax and wane over time; before treatment is started, baseline severity should be assessed for several months. The Yale Global Tic Severity Scale ([Leckman: 1989]) is available to document tics according to type, severity and impairment, but is designed for use by a trained observer. Other tic-rating scales (for example, see the Tic Severity Checklist ( 16 KB) ) are easier to use in the Medical Home setting.
• The treatment of tics depends on trial and error and frequent clinical visits to assess response and adjust dosage. A provider with expertise in this area is preferable. Because tics naturally wax and wane, medication trials should be conducted over prolonged periods of time (weeks to months). Medications should be started at small doses and increased gradually.
• If medications for tics are to be discontinued, they should be weaned over time, and only under provider guidance.
• When ADHD is co-morbid with TS, the treatment for ADHD should be the same as that for ADHD in a child without tics. Stimulant medications are unlikely to influence tic behavior. As tics will wax and wane naturally, it might appear in some cases that stimulant medication is exacerbating tics. Families should be alerted to the possibility that the course of tics is unpredictable and that tics may intensify naturally, irrespective of ADHD treatment. [Law: 1999] [Nolan: 1999] [Tourette's: 2002] [Erenberg: 2005]
• Although clonidine (see below) may be helpful for the treatment of ADHD symptoms in this population, it is not generally as successful as treatment with stimulants and takes weeks to months to show its effects. Clonidine, however, may decrease the frequency and intensity of tics in some patients, as well as treating attention deficits.

See TS medication table, PDF format ( 134 KB) from [Zinner: 2004] for specific dosing information.

• Neuroleptics - These medications are usually reserved for more severe tics. Although neuroleptics work well, no one medication is successful in all people with TS at doses that don't cause some side effects. Medications should be started at small doses, gradually increasing 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 in advance.
  
  Some experts prefer the typical neuroleptics. Haloperidol and pimozide are effective, and are the only drugs approved by the FDA for the management of tics in TS. [Silay: 2005] [Sallee: 1997] Others prefer the newer atypicals, of which risperidone and olanzapine have been shown to be effective. [Sandor: 2003] [Budman: 2001] [Bruun: 1996] Families should be told that, after long-term use, neuroleptics need to be discontinued slowly to avoid withdrawal problems, including a rebound in tic frequency, and tardive dyskinesia, a rare but permanent movement disorder particularly involving the mouth.
• Alpha-adrenergic agonists - Clonidine and guanfacine (Tenex). Although these may take a few months to decrease tics and are not as likely to be successful as neuroleptics, they are sometimes used because they have no risk of tardive dyskinesia. The most likely side effect of these medications is sedation. They may also be helpful in treating some of the other commonly associated symptoms of TS, especially ADHD. Oral clonidine needs to be taken three to four times a day. The clonidine patch, which needs to be changed only once a week, produces less sleepiness than the oral form but local allergic reactions to the patch are common. Guanfacine has a longer half-life and is reportedly less sedating than clonidine.
• Other - Benzodiazepines, antispasmodic agents (baclofen), dopamine agonists (permax), botulinum injections, and even surgery are sometimes used in refractory cases, where more common medications are not helpful or when their use is limited by side effects. Botulinum toxin (Botox) is most helpful when the patient is experiencing a severe, localized tic, such as in the face or neck. The Botox is injected by an experienced practitioner into the affected muscle groups and lasts for several months.

Subspecialist Collaborations and Other Resources

For the child with severe TS and/or associated problems, co-management with a TS expert may be helpful. The pediatric specialties with the most expertise in TS and associated conditions may vary by community among child neurology, child psychiatry, or developmental pediatrics. If you have chosen a state's resources to be displayed, that region's local experts will be shown below. In addition, children with TS often need assessment by related professionals such as occupational therapy and psychology. Other services, as well as local and national organizations focused on TS, may be found in the Resources section.

Subspecialist Collaborations and Other Resources

Subspecialist Collaborations and Other Resources

For Professionals

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

Tourette Syndrome Association
The only national organization serving children, individuals, and families affected by Tourette Syndrome (TS). Includes six online CME/CNE programs, programs on Recognition, Diagnosis and Treatment, as well as training for Allied Professionals and Educators. The website also contains resources for patients and families.

For Parents and Patients

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

Tourette Syndrome Association
The only national organization serving children, individuals, and families affected by Tourette Syndrome (TS). Includes six online CME/CNE programs, programs on Recognition, Diagnosis and Treatment, as well as training for Allied Professionals and Educators. The website also contains resources for patients and families.

Tourette syndrome (Genetics Home Reference)
Information for patients/families about Tourette syndrome from Genetics Home Reference, sponsored by the National Library of Medicine

Tourette syndrome internet community
Provides an online interactive community for families and children with TS including email, pen-pals, message boards and chat rooms.

Camps

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Child Psychiatry

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Child Psychology

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Developmental Pediatrics

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Neuropsychology

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Occupational Therapy

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Pediatric Neurology

See all Pediatric Neurology services providers (3) in our database.