Children and Youth with Complex Cerebral Palsy

Children with complex cerebral palsy (typically, but not always, GMFCS levels IV and V) require skilled management and extensive expertise which can be overwhelming or intimidating for many clinical practitioners. This book explores management of the many medical comorbidities these children encounter, including orthopedic concerns, mobility and equipment needs, cognition and sensory impairment, difficult behaviors, seizures, respiratory complications and nutritional challenges, among many others.

Summary points at the end of each chapter provide at-a-glance access to key recommendations. In addition, an Appendix provides adaptable care tools to guide clinicians in evaluation, preventive care and crisis management.

Importantly, the book includes contributions from parents of children with cerebral palsy and youth with cerebral palsy, providing unique and critical wisdom for family-centred care. Parents and families of children and youth with complex cerebral palsy will particularly appreciate the inclusion of chapters on adolescence, transition to adulthood, and growing up, growing well with cerebral palsy.

Author Appointments

Acknowledgements

Preface

Opening Quote

1. Overview and Introduction
Richard Stevenson and Laurie Glader

2. Functional Assessment and Goals of Management
Jilda N Vargus-Adams and Andrea L Paulson

3. Hypertonia
Darcy Fehlings, Anne Kawamura, Cecilia Lee and Amber Makino

4. Musculoskeletal/Orthopedic Management
Mark J Romness and Victor Anciano

5. Seating, Mobility, and Equipment Needs
Christopher D Lunsford and Jonathan Greenwood

6. Osteoporosis and Fractures
Steven J Bachrach and Heidi H Kecskemethy

7. Feeding and Nutrition
Valentina Intagliata, Eva Delaney and Mary C Bickley

8. Gastrointestinal Issues
Beate Beinvogl and Munir Mobassaleh

9. Overview of Pulmonary and Sleep Disorders in Children with Complex Cerebral Palsy
Umakanth Katwa and Sebastian K Welsh

10. Speech and Communication
John M Costello and Elizabeth N Rose

11. Cognitive and Sensory Impairment
Katheryn F Frazier

12.Challenging Behaviors, Sleep and Toileting
Alisa Bahl and Kurt A Freeman

13. Mental health in Children and Adolescents with Cerebral Palsy
Kerim M Munir and Ikram Rustamov

14. Pain and Irritability
Julie Hauer

15. Seizures and Epilepsy in Children with Cerebral Palsy
John R Mytinger and Howard P Goodkin

16. Urologic Issues
Stuart Bauer

17. Adolescence and Sexuality
Susan Hayden Gray

18. Transition to Adulthood
Kitty O'Hare and Claudio Melo de Gusmao

19. Evidence Based Care: A Tool Chest for Helping Families Navigate Treatment Options
Lisa Samson-Fang

20. Difficult Topics and Decision Making
Jim Plews-Ogan and Richard I Grossberg

21. Through the Eyes of Parents
Michele Shusterman, Carol Shrader and Jennifer Lyman

22. Growing up, Growing Well with Cerebral Palsy
Andrew J Smith, Chelsea Strawser, Benjamin Schrader, Jaylan Norfleet and Garey Noritz

Appendix: Care Tools for Clinical Practice

Laurie Glader is an Assistant Professor at Harvard University Medical School. She trained in Developmental and Behavioral Pediatrics, ultimately focusing on children with medical complexity. Since 1997 she has directed the Complex Care Service Outpatient Program at Boston Children’s Hospital (BCH), and provides patients with comprehensive medical care and developmental oversight. Her particular area of interest is children with cerebral palsy and models of care delivery. She is co-director of the large multi-disciplinary Cerebral Palsy and Spasticity Center at BCH. She is active in the American Academy of Cerebral Palsy and Developmental Medicine.

Richard Stevenson is Professor of Pediatrics at the University of Virginia School of Medicine in the Division of Developmental Pediatrics, where he has been on the faculty since 1989. He is an attending pediatrician at the Child Development and Rehabilitation Center (CDRC) of the University of Virginia Children's Hospital, caring for children across the range of acquired and congenital disabilities. He is active in clinical care, education, research and administration. He is Past President of the American Academy for Cerebral Palsy and Developmental Medicine. His main interest and expertise relates to the care of children with cerebral palsy, and he has particular empathy for children with complex needs.