Subject: Cerebral Palsy and Other Motor Disorders

Series: Mac Keith Press Practical Guides

Publication date: 01/11/2018

ISBN: 9781909962989

Edition: 1st

Pages: 404

Children and Youth with Complex Cerebral Palsy

Care and Management

Laurie Glader, Richard Stevenson (Editors)

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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 Developmental Medicine and Child Neurology:

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A Practical Guide from Mac Keith Press

Laurie Glader
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
Richard 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
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

'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

'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

"...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

'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

Children and Youth with Complex Cerebral Palsy – Chapter 1: Overview of Cerebral Palsy (free ebook) - £0