This book is the first to provide comprehensive information in one place on the management of neuromuscular disorders (NMDs) in children. Written by experts from the international NMD community, this volume describes the natural history of the most frequent NMDs, such as Duchenne muscular dystrophy spinal muscular atrophy, hereditary neuropathies, congenital and metabolic neuropathies and myasthenic syndromes. Best practice management of key functions typically affected by NMDs, such as, cognition and mental health, respiratory function, gastrointestinal, nutritional and cardiology management is provided. Sexual issues and transition to adulthood are also discussed. The final part of the book provides a critical review of new evidenced-based management approaches to NMDs. The large number of healthcare professionals involved in managing children with NMDs will find this a useful one-stop reference resource.
Bietet Praxisleitlinien f?r Diagnose und Management der h?ufigsten neuromuskul?ren St?rungen.
- Erl?utert die Ans?tze bei den wichtigsten K?rperfunktionen, die von neuromuskul?ren Erkrankungen betroffen sind.
- Vereint die Stellungnahmen und Leitlinien der Experten des Fachgebiets.
- Pr?sentiert auch die j?ngsten therapeutischen Fortschritte bei Duchenne-Muskeldystrophie und spinaler Muskeldystrophie.
Foreword
Rudolf Korinthenberg
Preface
Nicolas Deconinck and Nathalie Goemans
Section A:? Introduction
1. Parent Perspectives on Neuromuscular Disorders: From Diagnosis, to Parenting and Living With, to Advance Care Planning and Preparing for Death
Anne Rutkowski, Stacy Cossette, Anne Lennox and Ann Schrooten
2. The Importance of Setting up Guidelines for Neuromuscular Disorders?
Thomas Sejersen