Providing authoritative and up-to-date medical and scientific information about Tourette syndrome, A Family's Guide to Tourette Syndrome speaks to patients, families, care providers, academic institutions, and medical centers in easy-to-understand language about this neurodevelopmental disorder that affects children, adolescents, and adults worldwide. Each chapter is authored by leading neurologists, psychiatrists, psychologists, scientists, and others with expertise and research interests in Tourette syndrome. Praise for A Family's Guide to Tourette Syndrome "I am delighted to see the breadth and wealth of valuable clinical and scientific findings that have been gathered together in this comprehensive resource for families. The information provided in this book is testimony to the talent, abiding intellectual curiosity, and dedication to compassionate care and sheer persistence of each of the professionals who have contributed chapters. Their common goal was clear and selfless-to uncover sound medical and scientific data that could provide much needed answers to the baffling complexities of Tourette syndrome. A mere two decades ago, it was clear to all in the field that the prospect of obtaining sufficient funding to explore more deeply the intriguing preliminary findings uncovered about the disorder was all but non-existent. Simply put-other research funding priorities prevailed at the time. And so we can appreciate that the decision by each of them to dedicate their professional efforts to the study of Tourette syndrome is especially laudable. And for this we all owe the contributing authors a profound debt of gratitude" -Sue Levi-Pearl, Emeritus TSA Vice President Medical and Scientific Programs

A Family's Guide To TOURETTE SYNDROME

iUniverse, Inc.

Copyright © 2012 Tourette Syndrome Association, Inc.
All right reserved.
ISBN: 978-1-4620-6857-9

Contents

Preface................................................................................................................................................................................................................viiForeword...............................................................................................................................................................................................................ixContributors...........................................................................................................................................................................................................xiAbbreviations..........................................................................................................................................................................................................xvChapter 1: Introduction Joseph Jankovic, M.D...........................................................................................................................................................................1Chapter 2: The Diagnosis of Tourette Syndrome James F. Leckman, M.D., Michael H. Bloch, M.D., and Robert A. King, M.D..................................................................................................8Chapter 3 Psychiatric Conditions Associated with Tourette Syndrome Barbara J. Coffey, M.D., M.S. and Amanda Zwilling, B.A..............................................................................................24Chapter 4 Problems with Anger, Aggression, and Impulse Control in Tourette Syndrome Cathy L. Budman, M.D. and Joanna Witkin, B.S.......................................................................................48Chapter 5 How Common is Tourette Syndrome in Children? Lawrence Scahill, M.S.N., Ph.D..................................................................................................................................67Chapter 6 The Causes of TS and Changes that Occur in the Brain Jonathan W. Mink, M.D., Ph.D............................................................................................................................73Chapter 7 Inheritance, Genes, and TS Jeremiah M. Scharf, M.D., Ph.D. and Carol A. Mathews, M.D.........................................................................................................................82Chapter 8 Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS) and Tourette Syndrome Tanya Murphy, M.D., M.S...............................................................97Chapter 9 Drug Treatments for Tourete Syndrome and Co-Morbid Disorders Donald L. Gilbert, M.D., M.S....................................................................................................................110Chapter 10 Tourette Syndrome, Pregnancy and Breastfeeding Emilie R. Muelly, Ph.D. and Cheston M. Berlin Jr., M.D.......................................................................................................125Chapter 11 Behavior Therapy Matthew R. Capriotti, B.S., Flint M. Espil, M.S., and Douglas W. Woods, Ph.D...............................................................................................................135Chapter 12 Deep Brain Stimulation for Tourette Syndrome Michael S. Okun, M.D., Herbert Ward, M.D., Irene Malaty, M.D., Nikki Ricciuti, RN, CCRC, LMHC, Candy Hill, Ph.D., and Kelly D. Foote, M.D......................145Chapter 13 Complementary and Alternative Therapies.....................................................................................................................................................................155Chapter 14 The Psychosocial Aspects of Tourette Syndrome: A Family Guide and Perspective...............................................................................................................................171Chapter 15 Living with Tourette Syndrome...............................................................................................................................................................................193Chapter 16 Parenting A Child with Tourette Syndrome....................................................................................................................................................................209Chapter 17 History and Research into Tourette Syndrome.................................................................................................................................................................222Chapter 18 Frequently Asked Questions and Answers About Tourette Syndrome..............................................................................................................................................229

Chapter One

INTRODUCTION

Joseph Jankovic, M.D.

INTRODUCTION

In this introductory chapter, I try to provide a brief overview of TS with a focus on the most important topics. The subsequent chapters in this book, written by Tourette syndrome experts in an easy-to-understand language, will expand on the topics introduced here.

In 1885, Georges Albert douard Brutus Gilles de la Tourette, a 28 year old student of Jean-Martin Charcot, professor at the famous Salptrire Hospital in Paris and considered by many as the father of modern neurology, published "A Study of a Neurological Condition Characterized by Motor Incoordination Accompanied by Echolalia and Coprolalia". Gilles de la Tourette (abbreviated in the literature and in this book as Tourette) described 9 patients and noted that all shared one feature—they all exhibited brief involuntary movements, which we now call "motor tics". Additionally, 6 made noises, so called "vocal or phonic tics", 5 shouted obscenities, so called "coprolalia", 5 repeated the words of others, so called "echolalia", and 2 mimicked others' gestures, so called "echopraxia". Despite the recognition by his mentor, Charcot, and his professional accomplishments, Tourette lived a troubled personal life. Shortly after the tragic death of his young son, Tourette was shot in the head by a paranoid young woman. During the turn of the century, Tourette's behavior became erratic and bizarre, likely due to neurosyphilis, and his wife had to commit him to an asylum in Switzerland where he remained until his death in 1904.

Although Tourette considered the disorder he described to be hereditary, the cause was wrongly attributed to psychological causes for nearly a century following the original report. The perception of TS begantochangeinthe1960swhenthebeneficialeffectsofantipsychotic drugs, such as haloperidol, began to be recognized. This observation helped to change the view of the disorder from primarily "mental" to an organic, biological, disorder due to an abnormality of the brain circuitry involved in mediating motor and behavioral functions.

TICS

Tics, the clinical hallmark of TS, are relatively brief and intermittent movements (motor tics) or sounds (vocal or phonic tics). Currently accepted criteria for the diagnosis of TS require both types of tics, motor and phonic, to be present. This division into motor and phonic tics, however, is artificial, because the wide variety of sounds that TS patients make are actually motor tics that involve muscles of the nose, mouth, throat, and other structures besides the voice box (larynx). Therefore, the term "phonic" is preferable to the term "vocal" tic. Tics may be simple or complex. Simple motor tics involve only a...