Management of Prader-willi Syndrome

by Butler, Merlin Gene; Lee, Phillip D. K.; Whitman, Barbara Y.

• ISBN13: 9780387253978
• ISBN10: 0387253971
• Edition: 3rd
• Format: Hardcover
• Copyright: 2006-05-01
• Publisher: Springer Verlag

Summary

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.

Table of Contents

Foreword I	v
Pamela F. Eisen
Foreword II	vii
Giorgiao Fornasier
Preface	ix
Janalee Heinemann
Acknowledgments	xi
Contributors	xvii
Introduction	xxi
Louise R. Greenswag
Randell C. Alexander
Part I Diagnosis and Genetics
Clinical Findings and Natural History of Prader-Willi Syndrome	3	(46)
Merlin G. Butler
Jeanne M. Hanchett
Travis Thompson
Diagnostic Criteria for Prader-Willi Syndrome	49	(9)
Shawn E. McCandless
Suzanne B. Cassidy
Molecular Genetic Findings in Prader-Willi Syndrome	58	(16)
Karin Buiting
Bernhard Horsthemke
Laboratory Testing for Prader-Willi Syndrome	74	(23)
Kristin G. Monaghan
Daniel L. Van Dyke
Part II Medical Physiology and Treatment
Medical Considerations in Prader-Willi Syndrome	97	(56)
Urs Eiholzer
Phillip D.K. Lee
Gastrointestinal System, Obesity, and Body Composition	153	(48)
Ann O. Scheimann
Phillip D.K. Lee
Kenneth J. Ellis
Growth Hormone and Prader-Willi Syndrome	201	(44)
Aaron L. Carrel
Phillip D.K. Lee
Harriette R. Mogul
Part III Multidisciplinary Management
Neurodevelopmental and Neuropsychological Aspects of Prader-Willi Syndrome	245	(27)
Barbara Y. Whitman
Travis Thompson
Speech and Language Disorders Associated with Prader-Willi Syndrome	272	(12)
Barbara A. Lewis
Motor and Developmental Interventions	284	(18)
Toni Goelz
Educational Considerations for Children with Prader-Willi Syndrome	302	(15)
Naomi Chedd
Karen Levine
Robert H. Wharton
Tools for Psychological and Behavioral Management	317	(27)
Barbara Y. Whitman
Kevin Jackson
Educational and Social Issues for Adolescents with Prader-Willi Syndrome	344	(12)
Barbara J. Goff
Transition from Adolescence to Young Adulthood: The Special Case of Prader-Willi Syndrome	356	(14)
Ellie Kazemi
Robert M. Hodapp
Vocational Training for People with Prader-Willi Syndrome	370	(11)
Steve Drago
Residential Care for Adults with Prader-Willi Syndrome	381	(14)
Mary K. Ziccardi
Inpatient Crisis Intervention for Persons with Prader-Willi Syndrome	395	(31)
Linda M. Gourash
James E. Hanchett
Janice L. Forster
Social Work Interventions: Advocacy and Support for Families	426	(14)
Barbara Y. Whitman
A National Approach to Crisis Intervention and Advocacy	440	(8)
David A. Wyatt
Advocacy Issues: School Discipline and Expulsion	448	(9)
Barbara J. Goff
Advocacy Issues: Sexuality	457	(78)
Janalee Heinemann
David A. Wyatt
Barbara J. Goff
Appendices
A. First Published Report of Prader-Willi Syndrome	467	(6)
B. A Comprehensive Team Approach to the Management of Prader-Willi Syndrome	473	(14)
Urs Eiholzer
C. Growth Charts of Individuals with Prader-Willi Syndrome	487	(17)
D. Eligibility for U.S. Social Security and SSI Benefits for Individuals with Prader-Willi Syndrome	504	(10)
Barbara R. Silverstone
E. The International Prader-Willi Syndrome Organization	514	(15)
F. The Prader-Willi Syndrome Association (USA)	529	(6)
Index	535