Cerebral Palsy : A Complete Guide for Caregiving

511 Pages·2007·6.19 MB·English

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