Management of Neuromuscular Disorders in Children

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

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