Diagnosis and Genetics.- Clinical Findings and Natural History of Prader-Willi Syndrome.- Diagnostic Criteria for Prader-Willi Syndrome.- Molecular Genetic Findings in Prader-Willi Syndrome.- Laboratory Testing for Prader-Willi Syndrome.- Medical Physiology and Treatment.- Medical Considerations in Prader-Willi Syndrome.- Gastrointestinal System, Obesity, and Body Composition.- Growth Hormone and Prader-Willi Syndrome.- Multidisciplinary Management.- Neurodevelopmental and Neuropsychological Aspects of Prader-Willi Syndrome.- Speech and Language Disorders Associated with Prader-Willi Syndrome.- Motor and Developmental Interventions.- Educational Considerations for Children with Prader-Willi Syndrome.- Tools for Psychological and Behavioral Management.- Educational and Social Issues for Adolescents with Prader-Willi Syndrome.- Transition from Adolescence to Young Adulthood: The Special Case of Prader-Willi Syndrome.- Vocational Training for People with Prader-Willi Syndrome.- Residential Care for Adults with Prader-Willi Syndrome.- Inpatient Crisis Intervention for Persons with Prader-Willi Syndrome.- Social Work Interventions: Advocacy and Support for Families.- A National Approach to Crisis Intervention and Advocacy.- Advocacy Issues: School Discipline and Expulsion.- Advocacy Issues: Sexuality.
Foreword, Pam Eisen and Giorgio Fornasier * Preface, Janalee Heinemann * Contributors * Introduction * Louise Greenswag and Randell Alexander * Part I Diagnosis and Genetics * Chapter 1 Clinical Findings and Natural History of Prader-Willi Syndrome, Merlin G. Butler, Jeanne M. Hanchett, and Travis Thompson * Chapter 2 Diagnostic Criteria for Prader-Willi Syndrome, Shawn E. McCandless and Suzanne B. Cassidy * Chapter 3 Molecular Genetic Findings in Prader-Willi Syndrome, Karin Buiting and Bernhard Horsthemke * Chapter 4 Laboratory Testing for Prader-Willi Syndrome, Kristin G. Monaghan and Daniel L. Van Dyke * Part II Medical Physiology and Treatment * Chapter 5 Medical Considerations in Prader-Willi Syndrome, Urs Eiholzer and Phillip D. K. Lee * Chapter 6 Gastrointestinal System, Obesity, and Body Composition, Ann O. Scheimann, Phillip D. K. Lee, and Kenneth J. Ellis * Chapter 7 Growth Hormone and Prader-Willi Syndrome, Aaron L. Carrel, Phillip D. K. Lee, and Harriette R. Mogul * Part III Multidisciplinary Management * Chapter 8 Neurodevelopmental and Neuropsychological Aspects of Prader-Willi Syndrome, Barbara Y. Whitman and Travis Thompson * Chapter 9 Speech and Language Disorders Associated with Prader-Willi Syndrome, Barbara A. Lewis * Chapter 10 Motor and Developmental Interventions, Toni Goelz * Chapter 11 Educational Considerations for Children with Prader-Willi Syndrome, Naomi Chedd, Karen Levine, and Robert H. Wharton * Chapter 12 Tools for Psychological and Behavioral Management, Barbara Y. Whitman and Kevin Jackson * Chapter 13 Educational and Social Issues for Adolescents with Prader-Willi Syndrome, Barbara J. Goff * Chapter 14 Transition from Adolescence to Young Adulthood: The Special Case of Prader-Willi Syndrome, Ellie Kazemi and Robert M. Hodapp * Chapter 15 Vocational Training for People with Prader-Willi Syndrome, Steve Drago * Chapter 16 Residential Care for Adults with Prader-Willi Syndrome, Mary K. Ziccardi * Chapter 17 Inpatient Crisis Intervention for Persons with Prader-Willi Syndrome, Linda M. Gourash, James E. Hanchett, and Janice L. Forster * Chapter 18 Family Support and Advocacy-A Role for the Social Worker, Barbara Y. Whitman * Chapter 19 A National Approach to Crisis Intervention and Advocacy, David A. Wyatt * Chapter 20 Advocacy Issues: School Discipline and Expulsion, Barbara J. Goff * Chapter 21 Advocacy Issues: Sexuality, Janalee Heinemann, David A. Wyatt, and Barbara J. Goff * Appendices * A First Published Report of Prader-Willi Syndrome (in German), Andrea Prader, Alexis Labhart, and Heinrich Willi * English Translation, Commentary, and Historical Photographs, Urs Eiholzer, Editor * B A Comprehensive Team Approach to the Management of Prader-Willi Syndrome, Urs Eiholzer, Editor * C Growth Charts of Individuals with Prader-Willi Syndrome, Merlin G. Butler and F. John Meaney, United States * Berthold P. Hauffa et al., Germany, Toshiro Nagai et al., Japan * D Eligibility for U.S. Social Security and SSI Benefits for Individuals with Prader-Willi Syndrome, Barbara R. Silverstone * E The International Prader-Willi Syndrome Organization (IPWSO) * F The Prader-Willi Syndrome Association (USA) * Index
Management of Prader-Willi Syndrome brings together the contributions of professionals with considerable expertise in diagnosis and management of PWS. Clinical, social, family, and community issues are explored and management strategies identified. The text presents historical, medical, and genetic information to orient the reader. The major portion deals with pragmatic guidelines, rather than research and diagnosis, and is directed to health and educational specialists in academic, clinical, and community settings. This manual is endorsed by The Prader-Willi Syndrome Association, which is recognized world-wide.
The newly revised and thoroughly updated MANAGEMENT OF PRADER-WILLI SYNDROME provides the full range of information needed to both understand and manage this complex disorder. The book starts with the history and medical and genetic information to orient the reader. The majority of the text, however, deals with the bread and butter clinical concerns of physicians and nurses who treat these patients, while providing pragmatic guidelines to families, educators, and community and social workers. Undertaken with the cooperation of the Prader-Willi Syndrom Association of America, MANAGEMENT OF PRADER WILLIE SYNDROME is the most complete resource available on the topic.