Children and Youth with Complex Cerebral Palsy (ebook)

Care and Management

Product Type: PDF (Complete Book)

ISBN: 9781909962996

Laurie Glader (Editor), Richard Stevenson (Editor)

Series: Practical Guides from Mac Keith Press

Edition: 1st

Publication date: November 2018

Page count: 404

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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. In addition, adaptable care tools will be provided both in the text and as a resource to download from this page, 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.

  • The first practical guide to focus exclusively on children with more severe or complex forms of cerebral palsy
  • Summary points at the end of each chapter provide at-a-glance access to key recommendations
  • Downloadable Care Tools include a Health Review for Children; an Equipment, Supplies and Supports Checklist; and an ICF-Based Care: Goals and Management Form (see Further Materials)


Physicians, developmental and neurodevelopmental paediatricians, sub-specialist physicians and surgeons, therapists, dieticians, nurses, psychologists, educators, social workers, trainees across multiple disciplines, and the families of children and youth with complex cerebral palsy.

Video About the Book

Hear Prof. Peter Rosenbaum’s review of the book, in conversation with Prof. Bernard Dan, Editor-in-Chief of the Developmental Medicine and Child Neurology:

A Practical Guide from Mac Keith Press

Laurie Glader (Editor)

Laurie Glader

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 (Editor)

Richard D Stevenson

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.

  • Author Appointments
  • Acknowledgments
  • Preface
  • 1 Overview of cerebral palsy: definition, classification and impact
  • Laurie J. Glader and Richard D. Stevenson
  • 2 Functional assessment and goals of management
  • Jilda N. Vargus-Adams and Andrea L. Paulson
  • 3 Hypertonia
  • Darcy Fehlings, Cecilia Lee, Amber Makino and Anne Kawamura
  • 4 Musculoskeletal and 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
  • Mary C. Bickley, Eva Delaney and Valentina Intagliata
  • 8 Gastro-intestinal diseases in pediatric patients with complex
  • cerebral palsy
  • Beate Beinvogl and Munir Mobassaleh
  • 9 Overview of pulmonary and sleep disorders in children
  • with complex cerebral palsy
  • Sebastian K. Welsh and Umakanth Katwa
  • 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 B. 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 in children with complex cerebral palsy
  • Stuart Bauer
  • 17 Adolescence and sexuality
  • Susan Hayden Gray and Laurie J. Glader
  • 18 Transition to adulthood
  • Claudio M. de Gusmao and Kitty O’Hare
  • 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
  • Jaylan Norfleet, Benjamin Shrader, Andrew J. Smith, Chelsea Strawser
  • and Garey Noritz
  • 23 Care tools for clinical practice
  • Laurie J. Glader, Darcy Fehlings, Jonathan Greenwood, Christopher D. Lunsford,
  • Kerim M. Munir, Garey Noritz, Jim Plews-Ogan, Michele Shusterman,
  • Benjamin Shore, Jilda N. Vargus-Adams and Richard D. Stevenson
  • Index

Contents (PDF)

Author Appointments (PDF)

Preface (PDF)

Care Tools

The Care Tools from Chapter 23 are FREE to download as a PDF with every book purchase.

  1. Health review for children
  2. Equipment, supplies and supports checklist
  3. ICF-based care: goals and management form

Contact for free access if you have purchased the book from another book seller.

'I found reading this volume very informative for both beginners and advanced professionals in the field of treating of and caring for children with complex CP. I fully agree with Carole Shrader, a mother with triplets who provided the foreword that this volume reflects the necessity of a holistic approach of all involved in the care of a child with complex CP, to carry out their professional work with competence, as well as with passion. It encourages involving the parents and as much as possible children and young persons with CP to set common goals, to empower and to encourage parents to care for their child with special needs, as well as for themselves and the siblings. In summary, this book is indeed a comprehensive guide for treatment and care for highly dependent children with CP with multiple comorbidities in a standardized fashion. Laurie Glader and Richard Stevenson and the contributing experts are helping us to see more clearly how to achieve this and provide many helpful tools. Therefore, I can highly recommend this book for professionals at all levels of experience working with children with complex CP.' Christoph Kuenzle, Neuropediatrics, 2019

"...a very special, and very important, resource for the field. The aggregation of the material, the scope of the purview, the style of presentation and the endless resources that are contained herein should - MUST - make this an essential resource for every clinic everywhere that provides services to the young people and families to whom we have devoted our professional lives. We must also take every opportunity to help the world of 'adult care' know that there is now no excuse to avoid offering care to these 'former children'! I am especially impressed with the contributions by the parents, by the young people, and by the authors of the chapter on 'difficult topics'. So much of this book is about 'Knowledge Translation' - making what we know (or at least think we know) available to the people who 'need to know'!" Professor Peter Rosenbaum, January 2019

'This is a definite must-read for every clinician working with families with children and young people with complex disabilities. Sixty years ago, when Ronnie Mac Keith was setting up the Mac Keith Press, a book about children with cerebral palsy (CP) would have looked very different. The emphasis then was very much on ‘fixing’ those aspects of body structure and function that could be influenced, mostly by surgical and some medical treatments. This new book reflects a completely different 21st century approach, underpinned by the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) throughout. All in all, a book to be highly commended for all child development, disability, and neurology teams, combining up-to-date science and knowledge with practical tools and advice on how to deliver patient and family-centred care with kindness and compassion.' Karen Horridge, Developmental Medicine & Child Neurology, 2019

'Children and Youth with Complex Cerebral Palsy tackles every important aspect of managing a patient with such a diagnosis, bridging the gap between professional assistance and familial care. It becomes clear that offering the best possible medical care is not enough to unsure life quality and reading about similar experiences might be significant in improving the level of understanding of this disease and most importantly in bringing a sense of belonging and hope to those who need it. In conclusion, I find the book to be just what the title promises—a handbook on medical and emotional support, useful for patients and everyone involved in their care.' Ioana Alexandra Pădureț, European Journal of Human Genetics, 2019