Management of Neuromuscular Disorders in Children

A Multidisciplinary Approach to Management

Deconinck, Nicolas / Goemans, Nathalie (Editor)

Clinics in Developmental Medicine

1. Edition August 2019
468 Pages, Hardcover
Practical Approach Book

ISBN: 978-1-911612-08-7

John Wiley & Sons

Sample Chapter

Buy now

Price: 109,00 €

Price incl. VAT, excl. Shipping

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

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

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.