A Family's Guide to Tourette Syndrome

Abstract

This well-written and easy-to-read text is designed for patients, parents, educators, and medical professionals who are impacted by Tourette syndrome (TS). The book provides not only a historical perspective but also a summary of current knowledge, available resources, and future directions for research and study in nontechnical language that is accessible to all readers. This book was released by the National Tourette Syndrome Association, Inc. (TSA) which describes itself as “the most notable advocate for people touched by this disorder and is perhaps the leading supporter of Tourette syndrome research and education around the world.” The opening chapter provides an overview for the contents of the book, including the definition, diagnosis, and treatment of TS, as well as the genetic basis and possible environmental triggers of the syndrome. One particularly memorable chapter is written by a physician who has spent her life working with patients with TS, and she illustrates how the psychosocial aspects of TS can impact the individual's perception of his or her disorder. Another chapter is written by a mother of three children with TS who, herself, also suffers from TS. This chapter provides an intimate and personal description of living with TS and parenting children with TS. The authors of each chapter represent a diverse array of experience with the disorder and each lends a unique perspective based on their role as a clinician, researcher, or parent. The final chapter contains 50 “Frequently Asked Questions” with brief responses and is an excellent resource for people looking for a quick answer. Throughout the book, multiple figures, graphs, and illustrative case examples help to make more of the complex concepts or multiple treatment strategies easier to understand and interpret. Several chapters address treatment. One section is devoted to drug treatments used to target the symptoms of TS and the multiple disorders known to be comorbid with TS, including attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, anxiety, and depression. The chapter begins by defining how scientific studies into drug efficacy are conducted, followed by a description and chart of medications which includes the generic drug names, brand drug names, mechanism of action, FDA approval status, and side effects. Later chapters discuss behavioral therapies including Comprehensive Behavioral Intervention for Tics (CBIT), a form of cognitive behavioral therapy that is focused on first “awareness training” of when a tic is about to occur, followed by “competing response training” where the patient then identifies a physical response that he or she can use when feeling the urge to tic. This form of therapy emphasizes the importance of social support and encouragement for the person practicing the CBIT techniques. In addition to discussing the history and well-defined knowledge related to TS, the book also explores more controversial areas including pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), complementary and alternative medicine (CAM) therapies, medication use during pregnancy and breastfeeding, and deep brain stimulation (DBS) as a treatment for some with TS. However, an updated version reflecting more recent discussions regarding these topics and using the language of the Diagnostic and Statistical Manual–Fifth Edition would make this section more practical and applicable. While the language of this text is aimed toward parents and caregivers, interested clinicians may find this an accurate and easy-to-read resource to refresh their knowledge of this disorder. However, this book is not meant to be a clinical reference, and interested parties seeking peer-reviewed material would need to look elsewhere. Overall, A Family's Guide to Tourette Syndrome offers concise and easily understandable information in a manner that is accessible to all readers. This book will be of special interest to parents, teachers, patients, or any person interested in an overview of how TS is defined, what treatments are available, and what research is ongoing.