Freeman Miller - Cerebral Palsy: A Complete Guide for Caregiving

CEREBRAL PALSY

A JOHNS HOPKINS PRESS HEALTH BOOK

FREEMAN MILLER, MD, is Co-Director of the Cerebral Palsy Program at the Nemours / Alfred I. duPont Hospital for Children, Wilmington, Delaware; Assistant Professor of Orthopaedic Surgery at Sidney Kimmel School of Medicine of Thomas Jefferson University, Philadelphia, Pennsylvania; and Affiliated Associate Professor of Kinesiology and Mechanical Engineering at the University of Delaware, Newark.

STEVEN J. BACHRACH, MD, is Co-Director of the Cerebral Palsy Program and former Chief of the Division of General Pediatrics at the Nemours / Alfred I. duPont Hospital for Children, Wilmington, Delaware, and Professor of Pediatrics at Sidney Kimmel School of Medicine of Thomas Jefferson University, Philadelphia, Pennsylvania. He is also Medical Director at the HMS School for Children with Cerebral Palsy, in Philadelphia.

Cerebral Palsy

A Complete Guide for Caregiving
THIRD EDITION

Freeman Miller, MD

Steven J. Bachrach, MD

and The Cerebral Palsy Center at Nemours / Alfred I. duPont Hospital for Children

Note to the Reader: This book is not meant to substitute for medical care of people with cerebral palsy, and treatment should not be based solely on its contents. Instead, treatment must be developed in a dialogue between the individual or the individuals parent and his or her physician. Our book has been written to help with that dialogue.

Drug dosage: The author and publisher have made reasonable efforts to determine that the drugs discussed in this text conform to the practices of the general medical community. The medications described do not necessarily have specific approval by the US Food and Drug Administration for use in treatment of the diseases for which they are recommended. In view of ongoing research, changes in governmental regulation, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert of each drug for any change in indications and dosage and for warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently used drug.

1995, 2006, 2017 Johns Hopkins University Press
All rights reserved. Published 2017
Printed in the United States of America on acid-free paper
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Library of Congress Cataloging-in-Publication Data

Names: Miller, Freeman, author. | Bachrach, Steven J., author.

Title: Cerebral palsy : a complete guide for caregiving / Freeman Miller, MD, Steven J. Bachrach, MD, and the Cerebral Palsy Center at Nemours / Alfred I. duPont Hospital for Children.

Description: Third edition. | Baltimore : Johns Hopkins University Press, 2016. | Series: A Johns Hopkins Press health book | Includes bibliographical references and index.

Identifiers: LCCN 2016028464| ISBN 9781421422152 (hardcover : alk. paper) | ISBN 1421422158 (hard-cover : alk. paper) | ISBN 9781421422169 (pbk. : alk. paper) | ISBN 1421422166 (pbk. : alk. paper) | ISBN 9781421422176 (electronic) | ISBN 1421422174 (electronic)

Subjects: LCSH: Cerebral palsied children. | Cerebral palsyPopular works.

Classification: LCC RJ496.C4 M53 2016 | DDC 618.92/836dc23

LC record available at https://lccn.loc.gov/2016028464

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. Unless otherwise noted, illustrations are by Jacqueline Schaffer.

Special discounts are available for bulk purchases of this book. For more information, please contact Special Sales at 410-516-6936 or .

Johns Hopkins University Press uses environmentally friendly book materials, including recycled text paper that is composed of at least 30 percent post-consumer waste, whenever possible.

Contents

FOREWORD

PROBABLY EVERY PARENT of every child who has a health problem remembers the first 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-five 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 doctor 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 before 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 its difficult to know in the early years of childhood just what cerebral palsy does mean for an individual child. With cerebral palsy, as with many things in life, only time will tell. But waiting, and not knowing, is a very difficult 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 wed found the doctors who would not only help our family through the difficult times but cheer along with us when times were good. Their medical advice proved to be among the most valuable wed 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 Nemours / Alfred I. duPont Hospital for Children because of age restrictions. Both my husband and I will be ever appreciative and grateful.

Sound professional advice and a caring commitment to do whats best for your child. Thats what anyone who is the parent of a child with cerebral palsy wants. And thats what Drs. Miller and Bachrach and their colleagues offer in this book. They will help you understand cerebral palsy and how it affects 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 its like to be the parent of a child with cerebral palsy. Perhaps most importantly, they will do all this because they care so much about the children.

Whether youve just learned that your own precious child has cerebral palsy or you and your family have been living with this condition for several years, you will find that this book is a wonderful resource, as valuable to someone with an infant as to someone with a young adult. I still open the book and glance through it from time to time. I still learn from its masters, and its still a timely fit. 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.