Prognosis
If you are new to Tourette Syndrome - there is hope. Most often it is the severe and most distressing symptoms of TS that is presented by the media. But, most TS is not like that. Less than 10% of people with TS ever have coprolalia (involuntary swearing) for instance. Recent research (in UK and US) show that 3% of the general secondary school population have enough symptoms for diagnosis of TS. Most of them are unaware and lead entirely normal lives.
It is thought that tics may peak or worsen at or between the ages of 9-15, and thereafter decrease. Many people with TS, about a third, lose all tics completely by adulthood, although tics sometimes do return later in life. Another third experience a reduction in their symptoms by adulthood, and the remaining third have tics (which may be severely disruptive) throughout their life. However, as can be seen from the list of positives - the vast majority of people lead a successful life. Another study (Leckman et al 1998) has shown that the average age of worst tic severity is 10 years, and that in nearly half of patients, the tic symptoms will remit completely by the age of 18.
It's important to note too, that the TS sufferers involved in any research are likely to have more severe symptoms requiring attendance at the specialist TS clinic conducting the research.
More info from the FAQ page, and at Tourette Syndrome - Now What?
Course of tic severity in Tourette syndrome: The first two decades
Tourette Syndrome - Now What? discusses prognosis in greater depth at her website.
Neuropsychiatric disorders of childhood: Tourette’s syndrome as a model
"The individuals with TS who do the best, we believe, are: those who have been able to feel relatively good about themselves and remain close to their families; those who have the capacity for humor and for friendship; those who are less burdened by troubles with attention and behavior, particularly aggression; and those who have not had development derailed by medication. Children with relatively milder tics may become chronic patients and some with quite severe tics may develop into outgoing, happily married and successful young adults."
DJ Cohen, JF Leckman, and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press, 1997.
Course of tic severity in Tourette syndrome: The first two decades
"On average, the most severe period of tic severity occurred at 10.0 years of age. In eight cases (22%), the frequency and forcefulness of the tics reached a severe level during the worst-ever period such that functioning in school was impossible or in serious jeopardy. In almost every case this period was followed by a steady decline in tic severity. By 18 years of age nearly half of the cohort was virtually tic-free. The onset of puberty was not associated with either the timing or severity of tics.
... By early adulthood, tic severity may have declined sufficiently that a TS diagnosis may no longer be warranted.
... In our experience, families find comfort in the realization that tic severity will likely decline through adolescence. Such knowledge is likely to help families and pediatricians live with the tics and to delay the decision to begin psychotropic medications. Ages 8 through 12 are likely to be critical. If medications can be avoided through this period, the patient may have a good chance of never needing them. Although anti-tic medications are available, none are ideal. Over the longer term, starting medications may do more harm than good, given their potential adverse effects and the difficulties associated with medication withdrawal. This is particularly true of the standard neuroleptic agents such as haloperidol and pimozide."James F Leckman; Heping Zhang; Amy Vitale; Fatima Lahnin; Et al, 07/01/98, Pediatrics, Page 14, Copyright UMI Company 1998. All Rights Reserved. Copyright American Academy of Pediatrics Jul 1998
Tourette's far more common than once thought
"Most people view Tourette's as a very rare, unusual disorder with bizarre symptoms, but it's really very common, usually with mild symptoms," says Roger Kurlan, M.D., a professor of neurology at the University of Rochester Medical Center and lead author of the Neurology paper. "The cases you see on TV are the most severe cases, and they're just the tip of the iceberg. Most cases of Tourette's are much milder and don't progress to the severe form.......It's not a severe illness with bizarre symptoms; most people had relatively mild symptoms and did not go to their doctors for help. Most live a pretty normal life and are not disabled by tics."
Tourette Syndrome - Now What? Prognosis Page
