Education, public awareness, and research promotion of new treatment approaches for neurological conditions such as Tourette Syndrome, autism, ADD/ADHD, and learning disabilities.
Programs and services to educate and support families, educators, peers, and medical professionals in helping children with TS achieve success.
Education, advocacy, and support.
Education, telephone counseling, parent advocacy, and support.
Education, advocacy, research, and support with chapters throughout the US.
Education, advocacy, self-help, and the promotion of research.
Education, support, advocacy, and the promotion of medical research.
Educational and public awareness programs on a variety of movement disorders, resources for professionals, patient advocacy.
Guide to the Diagnosis and Treatment of Tourette Syndrome ~ Informational booklet for health professionals.
Helping a Child with Tourette Syndrome ~ How a mother treated her child with food, homeopathy, supplements, and other alternative therapies.
Obsessed by a Bug? ~ Are there any links among strep infections, brain antibodies and OCD/tic symptoms?
Nine Faces of the TS Parent ~ Insight into the emotional baggage that parents carry and tools to support parents in helping their child.
Post-Strep Treatment Improves Tics, OCD ~ Streptococcal infections now have been implicated in worsening some cases of obsessive-compulsive disorders (OCDs) and tic disorders.
Shutting Out Tourette's Syndrome ~ The story of Tim Howard, the American goalkeeper for the most famous team in the world -- Manchester United of England.
Tics and Tourette's ~ This information is directed to parents and caregivers of children and adolescents who have a tic disorder along with other neuropsychiatric disorders such as learning disorders, ADHD, ODD, CD, and mood disorders.
Tourette -- Now What? ~ This website helps families with a new diagnosis better understand and interpret literature about TS and realize that the prognosis for children diagnosed with tics is often optimistic.
Tourette Syndrome ~ Comprehensive article, including a review of the incidence, genetics, clinical picture, and management of TS.
Tourette Syndrome ~ This article on TS includes detailed information on various treatments.
Tourette Syndrome "Plus" ~ Comprehensive site with information on information on Tourette Syndrome, OCD, ADD/ADHD, "Rage Attacks," Mood Disorders, and other conditions that can lead to behavioral, academic, and job-related difficulties.
Tourette Tics Seen as 'Bad Habits' in Latin America ~ Costa Ricans, and possibly Latin Americans in general, have their own special way of viewing Tourette syndrome tics.
What Makes Tics Tick? ~ The fact that identical twins show differences in symptom severity suggests that environmental influences modify the clinical expression of TS.
Yeast and Tourette's Syndrome ~ How to treat TS by changing the diet.
What is Tourette Syndrome?
Tourette syndrome (TS) is a neurological disorder characterized by repetitive and involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.
The early symptoms of TS are almost always noticed first in childhood, with the average onset between the ages of 7 and 10 years. TS occurs in people from all ethnic groups -- males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics or transient tics of childhood.
Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.
What are the symptoms?
Some of the more common tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking. Perhaps the most dramatic and disabling tics are those that result in self-harm such as punching oneself in the face, or vocal tics including coprolalia (uttering swear words) or echolalia (repeating the words or phrases of others).
Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics, for example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished.
Additional problems may include:
What is the course of TS?
Tics come and go over time, varying in type, frequency, location, and severity. The first symptoms usually occur in the head and neck area and may progress to include muscles of the trunk and extremities. Most patients experience peak tic severity before the mid-teen years with improvement for the majority of patients in the late teen years and early adulthood. Approximately 10 percent of those affected have a progressive or disabling course that lasts into adulthood.
Can people with TS control their tics?
Although the symptoms of TS are involuntary, some people can sometimes suppress, camouflage, or otherwise manage their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed. Tics in response to an environmental trigger can appear to be voluntary or purposeful but are not.
How is TS diagnosed?
TS is a diagnosis that doctors make after verifying that the patient has had both motor and vocal tics for at least one year. There are no blood or laboratory tests for diagnosis, but neuroimaging studies, such as magnetic resonance imaging (MRI), computerized tomography (CT), and electroencephalogram (EEG) scans, or certain blood tests may be used to rule out other conditions that might be confused with TS.
How is TS treated?
There is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms. Because tic symptoms do not often cause impairment, the majority of people with TS require no medication for tic suppression. In many cases, medication can help control the symptoms, but there may be side effects, some of which interfere with cognitive processes. Stimulants such as Ritalin, Cylert, and Dexedrine that are prescribed for ADHD may increase tics, and their use is controversial.
Psychotherapy can help the person with TS better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur. Other types of therapy may also be helpful, including behavior modification therapy that can teach the substitution of one tic for another that is more acceptable, and the use of relaxation techniques, biofeedback, and exercise to reduce the stress that often exacerbates tics.
Is TS inherited?
Twin and family studies suggests that TS is an inherited disorder. Genetic studies also suggest that some forms of ADHD and OCD are genetically related to TS, but there is less evidence for a genetic relationship between TS and other neurobehavioral problems that commonly co-occur with TS. It is important for families to understand that genetic predisposition may not necessarily result in full-blown TS; instead, it may express itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that the gene-carrying offspring will not develop any TS symptoms.
The sex of the person also plays an important role in TS gene expression. At-risk males are more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms.
What is the prognosis?
Although there is no cure for TS, the condition in many individuals improves in the late teens and early 20s. As a result, some may actually become symptom-free or no longer need medication for tic suppression. Although the disorder is generally lifelong and chronic, it is not a degenerative condition. Individuals with TS have a normal life expectancy. TS does not impair intelligence. Although tic symptoms tend to decrease with age, it is possible that neurobehavioral disorders such as depression, panic attacks, mood swings, and antisocial behaviors can persist and cause impairment in adult life.
What is the best educational setting for children with TS?
Although students with TS often function well in the regular classroom, ADHD, learning disabilities, obsessive-compulsive symptoms, and frequent tics can greatly interfere with academic performance or social adjustment.
After a comprehensive assessment, students should be placed in an educational setting that meets their individual needs. Students may require tutoring, smaller or special education classes, and in some cases special schools.
All students with TS need a tolerant and compassionate setting that both encourages them to work to their full potential and is flexible enough to accommodate their special needs. This setting may include a private study area, exams outside the regular classroom, or even oral exams when the child's symptoms interfere with his or her ability to write. Untimed testing reduces stress for students with TS.
Information provided by the National Institute of Neurological Disorders and Stroke (NINDS).
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Our country is in a profound crisis, of decency, of civility, of character. Our best instincts are undermined at every turn. And our families, to which we turn in crisis, are feeling the strain with great intensity. Compounding this is the fact that our psychological theories don't work anymore, because they were developed decades ago, when families were tightly knit, relatively monolithic institutions. Diagnosing the problem is the first step to curing it, but Pipher also offers ideas for simple actions we can all take to help rebuild our families and strengthen our communities. Visit Parenting Teens.
Tracy Lynne Marsh
Written by leading experts in the field and experienced parents, this guide provides an excellent blend of professional expertise and empathetic advice. Families with newly diagnosed children find answers to their most pressing questions about this often perplexing neurological disorder, as well as coping strategies and emotional support