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Cerebral Palsy : A Complete Guide for Caregiving PDF

511 Pages·2007·6.19 MB·English
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Cerebral Palsy A Johns Hopkins Press Health Book Cerebral Palsy A Complete Guide for Caregiving second edition Freeman Miller, M.D. Steven J. Bachrach, M.D. with Marilyn L. Boos, R.N.C., M.S. Kirk Dabney, M.D. Linda DuVy, B.S., P.A.-C. Robin C. Meyers, M.P.H., R.D. Douglas T. Pearson, Ph.D. Kathleen Trzcinski, R.N., M.S.N., C.R.N.P. Rhonda S. Walter, M.D. Joan Lenett Whinston the johns hopkins university press baltimore Note to the Reader This book embodies our approach to cerebral palsy in general. It was not written about your child. While we believe and practice its philosophy, we adjust our ap- proach to suit each child’s particular need and each family’s situation. We would not treat your child without Wrst learning a great deal about him or her, and so your child’s treatment should not be based solely on what is written here. It must be de- veloped in a dialogue between you and your child’s physician. Our book is written to help you with that dialogue. © 1995, 2006 The Johns Hopkins University Press All rights reserved. Published 2006 Printed in the United States of America on acid-free paper 9 8 7 6 5 4 3 2 1 The Johns Hopkins University Press 2715 North Charles Street Baltimore, Maryland 21218-4363 Library of Congress Cataloging-in-Publication Data Miller, Freeman. Cerebral palsy : a complete guide for caregiving / Freeman Miller, Steven J. Bachrach ; with Marilyn L. Boos . . . [et al.].—2nd ed. p. ; cm. “A Johns Hopkins Press health book” Includes bibliographical references and index. ISBN 0-8018-8354-7 (alk. paper)—ISBN 0-8018-8355-5 (pbk. : alk. paper) 1. Cerebral palsied children. 2. Cerebral palsy—Popular works. I. Bachrach, Steven J. II. Title. III. Series. [DNLM: 1. Cerebral Palsy. 2. Caregivers. WS 342 M647c 2006] RJ496.C4M53 2006 618.92'836—dc22 2005052683 A catalog record for this book is available from the British Library. The preparation of illustrations for this book was supported in part by funding from the Nemours Research Programs of the Nemours Foundation. Illustrations on pages vi, viii, 2, 16, 40, 96, 122, 144, 166, 206, 228, 246, 256, and 268 are by Kathleen King; all other illustrations are by Jacqueline SchaVer. Contents Foreword, by Joan Lenett Whinston vii Preface ix Acknowledgments xi Contributors xiii P A R T C E R E B R A L P A L S Y H A N D B O O K 1 1. What Is Cerebral Palsy? 3 2. An Overview of Early Child Development 17 3. Medical Problems Associated with Cerebral Palsy 41 4. Intellectual, Psychological, and Social Development 97 5. Hemiplegia 123 6. Diplegia 145 7. Quadriplegia 167 8. The Adult with Cerebral Palsy 207 9. How the Health Care System Works 229 10. Financing Care for the Child with Cerebral Palsy 247 11. Navigating the Educational System 257 12. Being an Advocate for Your Child: Using the Legal System 269 P A R T C A R E G I V I N G T E C H N I Q U E S 2 Taking Care of Yourself When You Care for Others 297 Protecting the Caregiver’s Back: Basic Body Mechanics 300 Making Things Easier for You and Your Child: Home ModiWcations 302 Choosing Appropriate Seating 304 Choosing and Using Car Seats 309 About Wheelchair Maintenance 310 Pressure Management Awareness 312 vi ♦ c o n t e n t s Choosing a Stander 313 About Walkers and Gait Trainers 316 About Braces 317 Choosing the Correct Shoes 319 Increasing Independence with Service Dogs 320 Managing the System 321 Working with a Case Manager 322 Letters of Medical Necessity 323 Occupations for Adults with Cerebral Palsy 325 About Hospitalization 327 Keeping Medical History Records 331 Life Planning Process 335 About Casts 337 Using Nutritional Boosters 340 Managing Tube Feedings 341 Oral Hygiene: Providing Mouth and Teeth Care 343 Toilet Training Your Child 344 Giving an Enema 346 Giving Rectal Medications or Suppositories 347 Suctioning Techniques 349 P A R T C E R E B R A L P A L S Y E N C Y C L O P E D I A 3 From Achilles Tendon Lengthening to Vocational Rehabilitation 353 Resources: Support Groups, Foundations, and Government Agencies 463 Recommended Reading and Toys, and Where to Go to Chat with Others 473 Index 477 Foreword ♦ P R O B A B LY E V E R Y P A R E N T of every child who has a health problem remembers the Wrst time someone gave that problem a name. It may have been in the hospital, soon after the baby was born, or it may have been months, or even years, later. Hearing those words about your child, and wanting so much for them not to be true, is something that stays forever in your mind. For my husband and me, that moment occurred more than twenty-Wve years ago. It was when our son Joshua was six months old. We suspected something was wrong with Josh, and our pediatrician had recommended that we consult with a specialist. But we were not prepared to have the doc- tor tell us that Josh had cerebral palsy, and that his development was going to be delayed. Cerebral palsy. We had heard the words, of course, but they had never be- fore had any relation to us. What did these words mean for the future of our precious son? As time went on, we found out that it’s diYcult to know, in the early years of childhood, just what cerebral palsy does mean for an indi- vidual child. With cerebral palsy, as with many things in life, only time will tell. But waiting, and not knowing, is a very diYcult thing when it involves your child. While we were searching for answers, my husband and I met Dr. Freeman Miller and Dr. Steven Bachrach. We were so impressed with the concern and sensitivity they showed toward Josh, and toward us, that we knew we’d found the doctors who not only would help our family through the diYcult times but would cheer along with us when times were good. Their medical advice proved to be among the most valuable we’d ever received, and their open, caring, and honest approach let us know that they would be there for us when we needed them. Drs. Bachrach and Miller have been there all through the years, even after Josh was no longer eligible for treatment at the Alfred I. duPont Hospital for Children because of age restrictions. Both my husband and I shall be ever appreciative and grateful. Sound professional advice and a caring commitment to do what’s best for your child. That’s what anyone who is the parent of a child with cerebral viii ♦ f o r e w o r d palsy wants. And that’s what Drs. Miller and Bachrach and their colleagues oVer in this book. They will help you understand cerebral palsy and how it aVects your child. They will answer your questions. They will help you cope. They will show you on every page that they understand, at least a little bit, what it’s like to be the parent of a child with cerebral palsy. Perhaps most im- portantly, they will do all this because they care so much about the children. Whether you’ve just learned that your own precious child has cerebral palsy, or whether you and your family have been living with this condition for several years, you will Wnd that this book is a wonderful resource, as valu- able to someone with an infant as to someone with a young adult. I still open the pages and glance through it from time to time. I still learn from its mas- ters, and it’s still a timely Wt. I urge you not to put it on your bookshelf, but to keep it handy, and turn to it often. The information it provides will give strength and hope and courage, to both you and your child. I wish you luck and success in your journey. Joan Lenett Whinston Preface ♦ T H E I N F O R M A T I O N in these pages represents the current thinking of professionals who specialize in the medical, psychological, edu- cational, and legal aspects of caring for children who have cerebral palsy. The book was written for everyone who provides the daily care of a child with cerebral palsy, whether parent, grandparent, great-grandparent, brother, sis- ter, aunt, or uncle. We hope that teachers, physicians, and anyone else who cares about the well-being of such a child will also beneWt from it. Our goal in writing this book is to help those who care for a child with cerebral palsy understand the child’s needs and how these needs can best be met. In help- ing the caregivers, of course, our ultimate goal is to help the child. By learning about CP and the many options for treatment, parents and others will be better prepared to ask direct questions of the professional, who will probably respond by providing additional information or clariWca- tion. Thus, one of our purposes in writing this book is to improve commu- nication between the professional and the caregiver—again, resulting in bet- ter treatment for and care of the child. Cerebral Palsy: A Complete Guide for Caregiving is arranged in three parts. The Wrst part is composed of chapters that address a range of issues, usually progressing in sections by the chronological age of the child. You may want to read this part of the book from beginning to end, or you may prefer to turn to the speciWc section of this part of the book that addresses the issues that are relevant for your child right now. For example, if your child is 5 years old and has a hemiplegic pattern of involvement, you may want to begin by reading the introduction to Chapter 5, plus the section of that chapter that focuses on children with hemiplegia from age 4 to age 6. The twelve chapters in Part 1 are arranged as follows: Chapter 1 provides an overview of cerebral palsy, and Chapter 2 presents normal developmen- tal milestones from a pediatric perspective, including a discussion of normal and abnormal behavior. Chapters 3 and 4 describe medical problems and intellectual and psychosocial issues associated with CP. SpeciWc patterns of involvement are discussed in Chapters 5, 6, and 7. Although problems encountered in childhood provide the primary focus of this book, one

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