Management of Neuromuscular Disorders in Children

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.

• ForewordRudolf KorinthenbergPrefaceNicolas Deconinck and Nathalie GoemansSection A:  Introduction1. Parent Perspectives on Neuromuscular Disorders: From Diagnosis, to Parenting and Living With, to Advance Care Planning and Preparing for DeathAnne Rutkowski, Stacy Cossette, Anne Lennox and Ann Schrooten2. The Importance of Setting up Guidelines for Neuromuscular Disorders Thomas Sejersen3. A Multidisciplinary Approach and Management as Best Care Model in Neuromuscular DisordersNathalie GoemansSection B:  Assessment of a Child with a Neuromuscular Disorder: The Cornerstone for Management4. Clinical Evaluation and Diagnostic ApproachNicolas Deconinck, Sandra Coppens and Gauthier Remiche5. The Importance of Evaluating Function in Neuromuscular DisordersAnna G MayhewSection C: Overview of the Most Frequent Neuromuscular Conditions in Children and Disease Specific Medical Management6. Spinal Muscular Atrophy and Other Motor Neuron DiseasesWendy K M Liew, Banu Sundar and Basil T Darras7. Inherited NeuropathiesNicolas Deconinck and Lionel Paternoster8. Acquired NeuropathiesNicolas Deconinck9. Disorders of the Neuromuscular Junction: Inherited Myasthenic Syndromes and Juvenile Myasthenia GravisNicolas Deconinck10. Duchenne and Becker Muscular DytrophiesNathalie Goemans11. Limb Girdle Muscular DystrophiesNathalie Goemans12. Congenital Muscular DystrophiesNathalie Goemans13. Facioscapulohumeral Muscular DystrophyNicolas Deconinck14. Congenital MyopathiesSandra Coppens15. Myotonic DystrophiesLiesbeth De Waele16. Pompe DiseaseBoglarka Bansagi and Peter Witters17. Mitochondrial DisordersRudy van Coster18. ChannelopathiesNicolas Deconinck19. Inflammatory MyopathiesNicolas Deconinck and Laurence GoffinSection D: Physical Rehabilitation and Orthopaedic Management20. Lifelong Physiotherapy: Staying ActiveImelda de Groot21. Management of of Contractures: Stretching, Positioning and SplintingTina Duong and Kristy Rose22. Occupational Therapy and RoboticsImelda de Groot23. Orthopedic Complications in Neuromuscular DisordersMaarten Van Nuffel and Pierre Moens24. Neuromuscular ScoliosisPierre MoensSection E: Respiratory Management25. Assessment and Management of Respiratory Function in Children with Neuromuscular DisordersOscar Mayer, Hemant Sawnani and Michel ToussaintSection F: Feeding and Gastrointestinal Management26. Gatro-intestinal Complications and NutritionHasan Özen and Haluk TopalogouSection G: Cardiac Management27. Cardiac Management in Children with Neuromuscular DisordersKarim WahbiSection H: Psychosocial Aspects28. Cognitive, Behavioral and Psychosocial Aspects of Growing Up with a Neuromuscular DiseaseSam Geuens29. Transition to AdulthoodRos Quinlivan30. Sexual Health Needs in Patients with Neuromuscular DisordersLaurent Servais