Subject: Neurodevelopmental Disorders and Neurodisability

Series: Clinics in Developmental Medicine

Publication date: 01/07/2019

ISBN: 9781911612087

Edition: 1st

Pages: 468

Neuromuscular Disorders in Children

A Multidisciplinary Approach to Management

Nicolas Deconinck, Nathalie Goemans (Editors)

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Neuromuscular Disorders in Children: A Multidisciplinary Approach to Management critically reviews current evidence of management approaches in the field of neuromuscular disorders (NMDs) in children. Uniquely, the book focusses on assessment as the cornerstone of management and highlights the importance of a multidisciplinary approach.

A key section describes the clinical picture, diagnosis standards and natural history of the most frequent neuromuscular disorders in children, including:

  • muscular dystrophies
  • spinal muscular atrophy
  • congenital, metabolic, myotonic and inflammatory myopathies
  • myasthenic syndromes
  • and hereditary, acquired and inflammatory neuropathies.

Importantly, much of the book is dedicated to the latest management approaches in key clinical systems typically involved in NMDs. These include physical rehabilitation, orthopaedic, respiratory, gastrointestinal and cardiac management, as well as psychosocial aspects such as the transition to adulthood and sexual health needs. The latest advances in pharmaceutical therapies and future therapeutic strategies are also discussed.

From the Foreword

“Neuromuscular Disorders in Children… is consistently patient-centred, will help readers learn about the latest classification and treatment options for these diseases, and hopefully influence their attitudes and decisions caring for patients with NMDs. With broad distribution, this book will help to improve the fate and quality of life of many patients suffering from NMDs, as well as their families.”

Rudolf Korinthenberg MD

Professor Emeritus of Neuropaediatrics and Muscular Disorders


This book will prove a principal resource for all professionals involved in the care of children with NMDs, including neurologists, paediatricians, pneumologists, rehabilitation specialists, cardiologists, orthopaedists, physiotherapists, psychologists, occupational therapists and speech therapists.

Clinics in Developmental Medicine

Nicolas Deconinck
Nicolas Deconinck

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
Nathalie Goemans

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.

Rudolf Korinthenberg
Nicolas Deconinck and Nathalie Goemans
Section 1: 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 2: 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 3: 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 4: 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 5: Respiratory Management
25. Assessment and Management of Respiratory Function in Children with Neuromuscular Disorders
Oscar Mayer, Hemant Sawnani and Michel Toussaint
Section 6: Feeding and Gastrointestinal Management
26. Gatro-intestinal Complications and Nutrition
Hasan Özen and Haluk Topalogou
Section 7: Cardiac Management
27. Cardiac Management in Children with Neuromuscular Disorders
Karim Wahbi
Section 8: 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 gem of a book broadly covers all the necessary aspects of diagnosis and management in a field that may soon be exploding with new treatment options for neuromuscular genetic conditions.'

Eduardo De Sousa, MD, FAAN, FAANEM, Mercy NeuroScience Institute

'New therapeutic developments, predominantly based on molecular techniques, give rise to the hope that children with neuromuscular disorders will have a significantly better perspective than before. Even if these cause-oriented therapies are currently only available for a limited number of diseases, advances of symptomatic treatment help to improve the quality of life and the life expectancy of most of the neuromuscular patients. The aim of this book is to present the current therapeutic knowledge about neuromuscular diseases in children in a comprehensive and up-to-date way to guide the decisions in everyday clinical life. The authors are internationally renowned experts in the neuromuscular field with many years of experience in diagnostics and treatment. Altogether an excellent book, which can be warmly recommended to all pediatric neurologists with interest inneuromuscular disorders.'

Wolfgang Müller-Felber, Neuropediatrics, 2019

'The landscape of childhood neuromuscular disorders man-agement has transformed in the last 30 years, with dramaticimprovements in quality of life and survival. This is due toseveral reasons, some disorder-specific. But one fundamen-tal common factor across all neuromuscular disorders is thenow well-established concept of multidisciplinary manage-ment which is the core theme of this book. The authors have succeeded in providing aholistic and comprehensive overview of neuromusculardisorders in children and its management. There is something for everyone in this book from traineeneurologists, to neurologists who only occasionally seechildren with neuromuscular disorders, to the neuro-muscular experts. I would recommend this book as anaddition to bookshelves in every paediatric neurologydepartment.'

Sithara Ramdas, Developmental Medicine & Child Neurology, 2020

Neuromuscular Disorders in Children – Chapter 1: Parent Perspectives on Neuromuscular Disorders (free ebook) - £0
Neuromuscular Disorders in Children – Chapter 10: An Introduction to Muscular Dystrophies and Duchenne and Becker Muscular Dystrophies (ebook) - £3.40