This is a collection of information about two separate but related topics: the zealous pursuit of cure of tics by parents who have their children's tics under a high degree of magnification, and how that relates to Complementary and Alternative Medicine. There are several reasons for this post:
1. I believe that we have seen the "zealous pursuit of cure" switch from using prescription medication as the vehicle, to unproven and sometimes unsafe alternatives. Each can be equally harmful to a child's self-identity, and alternatives can be dangerous as well if not used under a physician's guidance.
2. I believe that the Tourette Syndrome Association has irresponsibly washed its hands of the magnitude of the problem (parents obsessively pursuing "cure" through unproven means) by shuffling off all inquiries to another organization, the Association for Comprehensive Neurotherapy (ACN - latitudes.org).
LECKMAN/COHEN ON ZEALOUS PURSUIT OF CURE
"One of the pleasures of a long involvement with children with Tourettes 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 childs 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. In the 1970s, we saw children and adolescents who had not received timely, sufficient, or appropriately targeted therapy; their Tourette's syndrome was not diagnosed or managed. Today, we see children who have had many medications started, raised, and lowered in rapid succession, without careful monitoring, and who are receiving four, five, or six medications concurrently. They 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.
From Chapter 1 of Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998.
A/N ON TS PROGNOSIS
"Second, even if Tourette Syndrome is the correct diagnosis, it is important for families, educators, and clinicians to focus on the whole person with TS, rather than on the relevant diagnostic category. 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. It is common, for example, for families to arrive at an initial consultation with the firmly held belief that their child, who at present has a few troublesome tics, is destined to become someone on a day-time-television talk show whose life has been devastated by TS. Active clinical intervention is required to adjust and correct these potentially harmful expectancies.
Third, the potential explanatory power of diagnostic categories at times can lure families and professionals into attributing more symptoms or maladaptive behavior to the disorder than is reasonable. This is particularly true when a child's development has been encumbered with other difficulties, such as pervasive development disorders (PDD), dyslexia, or disruptive behavior problems."
"... the legacy of TS in adult life is most closely associated with what it 'meant' to have severe tics as a child."
From 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.
LONG TERM PREDICTORS OF TS 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: Tourettes syndrome as a model, DJ Cohen, JF Leckman, and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press, 1997.
LP on CAM
"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
Zinner (TSA Medical Advisory Board on Alternative Approaches):
The original two journal-published articles by Zinner can be downloaded from the TSA's website
"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."
Quotes on the popularity of alternative treatment approaches to Tourette's:
"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."
and ...
"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 childrens 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."
1. I believe that we have seen the "zealous pursuit of cure" switch from using prescription medication as the vehicle, to unproven and sometimes unsafe alternatives. Each can be equally harmful to a child's self-identity, and alternatives can be dangerous as well if not used under a physician's guidance.
2. I believe that the Tourette Syndrome Association has irresponsibly washed its hands of the magnitude of the problem (parents obsessively pursuing "cure" through unproven means) by shuffling off all inquiries to another organization, the Association for Comprehensive Neurotherapy (ACN - latitudes.org).
LECKMAN/COHEN ON ZEALOUS PURSUIT OF CURE
"One of the pleasures of a long involvement with children with Tourettes 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 childs 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. In the 1970s, we saw children and adolescents who had not received timely, sufficient, or appropriately targeted therapy; their Tourette's syndrome was not diagnosed or managed. Today, we see children who have had many medications started, raised, and lowered in rapid succession, without careful monitoring, and who are receiving four, five, or six medications concurrently. They 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.
From Chapter 1 of Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998.
A/N ON TS PROGNOSIS
"Second, even if Tourette Syndrome is the correct diagnosis, it is important for families, educators, and clinicians to focus on the whole person with TS, rather than on the relevant diagnostic category. 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. It is common, for example, for families to arrive at an initial consultation with the firmly held belief that their child, who at present has a few troublesome tics, is destined to become someone on a day-time-television talk show whose life has been devastated by TS. Active clinical intervention is required to adjust and correct these potentially harmful expectancies.
Third, the potential explanatory power of diagnostic categories at times can lure families and professionals into attributing more symptoms or maladaptive behavior to the disorder than is reasonable. This is particularly true when a child's development has been encumbered with other difficulties, such as pervasive development disorders (PDD), dyslexia, or disruptive behavior problems."
"... the legacy of TS in adult life is most closely associated with what it 'meant' to have severe tics as a child."
From 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.
LONG TERM PREDICTORS OF TS 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: Tourettes syndrome as a model, DJ Cohen, JF Leckman, and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press, 1997.
LP on CAM
"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
Zinner (TSA Medical Advisory Board on Alternative Approaches):
The original two journal-published articles by Zinner can be downloaded from the TSA's website
"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."
Quotes on the popularity of alternative treatment approaches to Tourette's:
"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."
and ...
"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 childrens 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."
