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Bietet Praxisleitlinien für Diagnose und Management der häufigsten neuromuskulären Störungen.
- Erläutert die Ansätze bei den wichtigsten Körperfunktionen, die von neuromuskulären Erkrankungen betroffen sind.
- Vereint die Stellungnahmen und Leitlinien der Experten des Fachgebiets.
- Präsentiert auch die jüngsten therapeutischen Fortschritte bei Duchenne-Muskeldystrophie und spinaler Muskeldystrophie.
List of contents
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
3. A Multidisciplinary Approach and Management as Best Care Model in Neuromuscular Disorders
Nathalie Goemans
Section B: Assessment of a Child with a Neuromuscular Disorder: The Cornerstone for Management
4. Clinical Evaluation and Diagnostic Approach
Nicolas Deconinck, Sandra Coppens and Gauthier Remiche
5. The Importance of Evaluating Function in Neuromuscular Disorders
Anna G Mayhew
Section C: Overview of the Most Frequent Neuromuscular Conditions in Children and Disease Specific Medical Management
6. Spinal Muscular Atrophy and Other Motor Neuron Diseases
Wendy K M Liew, Banu Sundar and Basil T Darras
7. Inherited Neuropathies
Nicolas Deconinck and Lionel Paternoster
8. Acquired Neuropathies
Nicolas Deconinck
9. Disorders of the Neuromuscular Junction: Inherited Myasthenic Syndromes and Juvenile Myasthenia Gravis
Nicolas Deconinck
10. Duchenne and Becker Muscular Dytrophies
Nathalie Goemans
11. Limb Girdle Muscular Dystrophies
Nathalie Goemans
12. Congenital Muscular Dystrophies
Nathalie Goemans
13. Facioscapulohumeral Muscular Dystrophy
Nicolas Deconinck
14. Congenital Myopathies
Sandra Coppens
15. Myotonic Dystrophies
Liesbeth De Waele
16. Pompe Disease
Boglarka Bansagi and Peter Witters
17. Mitochondrial Disorders
Rudy van Coster
18. Channelopathies
Nicolas Deconinck
19. Inflammatory Myopathies
Nicolas Deconinck and Laurence Goffin
Section D: Physical Rehabilitation and Orthopaedic Management
20. Lifelong Physiotherapy: Staying Active
Imelda de Groot
21. Management of of Contractures: Stretching, Positioning and Splinting
Tina Duong and Kristy Rose
22. Occupational Therapy and Robotics
Imelda de Groot
23. Orthopedic Complications in Neuromuscular Disorders
Maarten Van Nuffel and Pierre Moens
24. Neuromuscular Scoliosis
Pierre Moens
Section E: Respiratory Management
25. Assessment and Management of Respiratory Function in Children with Neuromuscular Disorders
Oscar Mayer, Hemant Sawnani and Michel Toussaint
Section F: Feeding and Gastrointestinal Management
26. Gatro-intestinal Complications and Nutrition
Hasan Özen and Haluk Topalogou
Section G: Cardiac Management
27. Cardiac Management in Children with Neuromuscular Disorders
Karim Wahbi
Section H: Psychosocial Aspects
28. Cognitive, Behavioral and Psychosocial Aspects of Growing Up with a Neuromuscular Disease
Sam Geuens
29. Transition to Adulthood
Ros Quinlivan
30. Sexual Health Needs in Patients with Neuromuscular Disorders
Laurent Servais
About the author
Nicolas Deconinck is Professor and Deputy Head of Neurology at Hôpital Universitaire des Enfants Reine Fabiola, Belgium, where he leads the pediatric neuromuscular unit. He is also head of the clinical research programme at the Neuromuscular Center at Ziekenhuis University, Gent Belgium. Prof Deconinck is currently involved in several important new treatment development programmes in spinal muscular atrophy and Duchenne muscular dystrophy. He is actively involved in national and international research networks, with particular interest in the multidisciplinary aspects and the dissemination of standards of care.
Nathalie Goemans is a paediatrician and child neurologist, with certification in rehabilitation medicine. She is head of the Neuromuscular Reference Centre for Children at the University Hospitals, Leuven, Belgium. Her research activities involve translational and clinical research in various neuromuscular disorders, the development of new therapies for Duchenne muscular dystrophy and spinal muscular atrophies and the research and development of outcome measures to assess interventions in these diseases. She has contributed to over 80 journal articles on neuromuscular disorders.
Summary
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.
