|Click on the links below for recent updates, latest research on Tourette's, and current Tourette's information|
|• Recent Tourette's Research Findings & Announcements|
|• Tourette Syndrome Books, Videos, DVDs|
|• Tourette's Hall of Fame/Shame|
|• Tourette FAQ and Quotable Quotes|
|• Tourette's stories in the Media and on the Internet|
|• Explaining Tourette's to children or talking about Tourette syndrome in the classroom|
and Alternative Medicine:
Alternative Treatment of Tourette’s Syndrome
This is a collection of quoted information from medical sources about two separate but sometimes related topics: the “zealous pursuit of cure" of tics, and complementary and alternative treatment approaches to Tourette’s syndrome.
LONG TERM PREDICTORS OF TOURETTE’S SYNDROME PROGNOSIS
Severity of tics in childhood isn’t highly correlated with outcome or prognosis. There are many other factors that come into play in determining how well a child will do in adulthood. A supportive family, good socialization, and a capacity for humor are just some of the factors that may affect a child’s prognosis.
"Clinicians must emphasize that the most important predictors of long-term outcome and well-being have little or nothing to do with the presence of tics. Intelligence and the quality of socialization have been shown repeatedly to be the best long-term predictors of outcome, regardless of diagnosis. Bright, academically successful children who have close and enduring friendships are likely to continue to be successful interpersonally and professionally throughout their lives, regardless of their future tic symptom severity. ... Severely debilitating TS in adulthood is a rarity and represents the furthest extent of a very broad spectrum of symptom severity." Peterson and Cohen, The Treatment of Tourette's Syndrome: Multimodal, Developmental Intervention. Presented at a closed symposium held in New Orleans, Louisiana on April 12, 1996. No longer online at psychiatrist.com/psychosis/worldwide/current/tourettes.htm
"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." Neuropsychiatric disorders of childhood: Tourette’s syndrome as a model, DJ Cohen, JF Leckman, and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press, 1997.
PARENTAL MICROSCOPE OF SCRUTINY
However, it can be hard at times for parents to avoid placing a child with tics under a “parental microscope of scrutiny” due to parental concern about the tics. Disproportionate preoccupation with or emphasis on the disorder, placing the condition at the center of a child’s existence, can leave a child confused about his or her identity. At times, it seems that it is forgotten that children are more than a long list of diagnoses and things that need to be “fixed."
"One of the pleasures of a long involvement with children with Tourette’s syndrome has been to see that this optimistic attitude is quite often empirically valid. ... Their tics become less noticeable as they are no longer under the microscopic scrutiny of parents and other adults who often see a child’s imperfections under a high degree of magnification ...
... all too often, we have seen development become derailed not only because of the severity of symptoms and repercussions in family and community of tics and obsessive-compulsive disorder, but because of the pursuit of ‘cure’ through many treatments, including zealous use of medication. … [Children and adolescents] become confused about their bodily states, what and why they feel the way they do, and what is under their control. Their sense of autonomy becomes eroded.
"Even if Tourette Syndrome is the correct diagnosis, it is important for families, educators, and clinicians to focus on the whole person with TS … Preoccupations with the disorder potentially have a number of adverse consequences, not the least of which is the implicit message to the patient concerning his or her identity. To place TS at the center of a person's identity is to invite distortion and a set of negative expectations for that individual rather than a more adaptive outcome ... Chapter 1 of Tourette Syndrome, Advances in Neurology, Vol. 85., Editors, Donald J. Cohen, MD, Joseph Jankovic, MD, Christopher G. Goetz, MD., Lippincott, Williams & Wilkins, November, 2000.
LINGERING LEGACY OF TOURETTE’S SYNDROME IN ADULT LIFE
Studies show that tics will remit or subside for most children as they pass through adolescence. So, for most children, once they attain adulthood, what will remain of their childhood experience with tics will be the effects of “growing up different” and how that was responded to by people around the child.
In adulthood, a patient’s repertoire of tics usually diminishes in size and becomes predictable during periods of fatigue and heightened emotionality. Complete remission of both motor and phonic symptoms has also been reported … In such cases, the legacy of Tourette’s syndrome in adult life is most closely associated with what it meant to have severe tics as a child. For example, individuals who were misunderstood and punished at home and at school for their tics or who were teased mercilessly by peers and stigmatized by their communities will fare worse than a child whose interpersonal environment was more understanding and supportive." Chapter 1 of Tourette Syndrome, Advances in Neurology, Vol. 85., Editors, Donald J. Cohen, MD, Joseph Jankovic, MD, Christopher G. Goetz, MD., Lippincott, Williams & Wilkins, November, 2000.
ZEALOUS PURSUIT OF CURE AND ALTERNATIVE TREATMENTS
In the last decade, we have sometimes seen the "zealous pursuit of cure" and parental preoccupations with the disorder result in applications of unproven and sometimes unsafe alternative treatments. We hear reports (most often on the internet) of children whose simple childhood pleasures (the occasional unhealthy sweet treat or television viewing) are removed in the belief that this will help stop ticcing. At times, it appears that the goal is to stop all tics, even relatively mild ones. A healthy diet, exercise and lifestyle can help lower stress on the body, enabling one to cope better with tics. The concern is when there is an overemphasis on extreme dietary measures, depriving a child of simple pleasures that may increase tics, and/or making children feel even more different by subjecting them to all kinds of unproven alternative treatments, methodologies, vitamins, supplements, etc. Overzealous use of alternative treatments can be equally harmful to a child's self-identity, but even more, alternatives can be dangerous if not used under a physician's guidance. Children with tics may already “feel different.” Depriving them of birthday cake, video games, and other normal childhood pleasures, while subjecting them to large numbers of daily pills and frequent doctor visits and procedures, can leave the child feeling even more different. While there are cases where a child’s tics are severe enough that these measures may be warranted, sometimes the severity of tics is not always commensurate with the level of parental concern.
"Ironically, many parents who fear giving drugs to their children will seek alternative therapies that involve pills and elixirs with unstudied efficacy and side effects, but will not pursue behavioral therapy despite its documented efficacy and safety." Tourette Syndrome: Current Controversies and the Battlefield Landscape, Neal R Swerdlow MD PhD. Current Neurology and Neuroscience Reports 2005, 5:329-33.
THE POPULARITY OF ALTERNATIVE TREATMENT APPROACHES IN TS
"Fallacy: Dietary modification, allergy testing, and environmental allergen control can minimize tics.
Fact: Despite the popular appeal of these approaches, any role they might have in the management of tics has yet to be proved."
"What about complementary and alternative approaches?
Peer-reviewed published trials investigating complementary and alternative management for tics, using double-blinded, placebo controlled design, are scarce. Despite the paucity of research, families are overwhelmingly using complementary and alternative approaches for their children’s developmental and behavioral concerns, including TS. The National Center for Complementary and Alternative Medicine (NCCAM) within the National Institutes of Health provides health information guidelines for consumers and health-care professionals considering CAM approaches.
Despite the popular appeal of dietary modification, allergy testing, and environmental allergen control for the management of tics, no role has been proven for any of these approaches." From http://www.tsa-usa.org/Medical/images/cntped0804_022-036T1R2.pdf and http://www.tsa-usa.org/Medical/images/cntped0804_038-049T2R1.pdf “DR. ZINNER is assistant professor of pediatrics and a developmental behavioral pediatrician at the University of Washington, Center on Human Development and Disability, Seattle. He is a member of the medical advisory board of the Tourette Syndrome Association, Inc."
A WORD ABOUT SAFETY FROM THE ‘TOURETTE SYNDROME PLUS’ WEBSITE:
"What About Vitamin Supplements and the Like?
If someone recommends an alternative treatment or something that is not FDA-approved (such as vitamins or herbal supplements that are sold over-the-counter), you should not assume that it is necessarily safe or that it can be combined with any medication.
A number of years ago, the FDA decided not to regulate the vitamins/herbals industry. Their decision should not be interpreted to mean that herbals don't have the potential to have adverse or even life-threatening consequences at times. It simply means that the U.S. government took a ‘hands off’ position.
At a workshop held in 1999, Dr. Rossann Philen of the Centers for Disease Control and Prevention in Atlanta reported that alone and in combination with prescribed drugs, a wide variety of dietary supplements -- including azarcon, greta, pay-loo-ah, chaparral, jin bu huan, ephedrine, and many others -- have been linked to severe illness, exacerbation of disease, liver damage, and even death. More recently, Gardiner et al. (2004) reported that a growing number of children and adolescents are using dietary supplements. The researchers found more than 50 percent of young children and more than 30 percent of adolescents in the United States have used a dietary supplement. 'We surveyed 145 families and 45 percent reported giving their child an herbal product. Most of these caregivers did not believe or were uncertain if herbal products had any side effects, and only 27 percent could name a possible side effect. We found that more than half of caregivers were unsure or thought that herbal remedies did not interact with other medications,' Dr. Kathi J. Kemper, a pediatrician at Brenner Children's Hospital, said in a prepared statement. 'And of those giving their children herbal products, only 45 percent reported discussing their use with their child's primary health-care provider,' Kemper said.
The statements above may alternately alarm and inflame many parents of children with neurobehavioral conditions, since there is a small group of parents who seem committed to trying one particular alternative therapy regimen. My intention is not to alarm anyone, but to remind everyone that just because something is sold "over the counter" or without prescription, it doesn't make it safe. Don't assume safety. Ask. Copyright 1999, revised 2004. Leslie E. Packer, PhD. This handout may be reproduced for your personal noncommercial use." Published at www.tourettesyndrome.net/Files/RxQuestions.pdf
The obsessive “pursuit of cure" through unproven methodologies and treatments is fueled by information available on the internet and by an organization with a view to promote. I believe the Tourette Syndrome Association should take a more active role in awareness about the issues surrounding unproven treatments and those who promote them, rather than referring inquiries to other organizations. The obsessive pursuit of "tic triggers" negates the simple fact that tics DO wax and wane regardless of "triggers." We head down a very slippery slope if we honestly believe that all tics have "triggers" and that our goal should be to identify all "triggers" and stop all tics. That comes dangerously close to the supporting the notion that we can stop all tics if we just work hard enough at it, and that in turn comes close to negating any genetic basis for tic disorders. Putting a child under the parental microscope of scrutiny can compromise the child's identity. Doing it for unproven reasons (the obsessive pursuit of "tic triggers"), and based on faulty science (biased and unscientific internet surveys), does a disservice to children who may already be feeling different and shouldn't have to deal with even more deviation from a "normal" childhood.
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
| About Us
Tourette Syndrome Stories |