Your Child with Inflammatory Bowel Disease A Family Guide
for Caregiving - 2nd Edition
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Your Child with Inflammatory Bowel
Disease
A Johns Hopkins Press Health Book
Your Child with Inflammatory Bowel
Disease
A Family Guide for Caregiving
SECOND EDITION
North American Society for Pediatric Gastroenterology,
Hepatology and Nutrition
EDITORS-IN-CHIEF
Maria Oliva-Hemker, MD
David Ziring, MD
Shehzad A. Saeed, MD
Athos Bousvaros, MD, MPH
© 2010, 2017 Johns Hopkins University Press
All rights reserved. Published 2017
Printed in the United States of America on acid-free paper
987654321
Johns Hopkins University Press
2715 North Charles Street
Baltimore, Maryland 21218-4363
www.press.jhu.edu
Library of Congress Cataloging-in-Publication Data
Names: Oliva-Hemker, Maria, editor. | Ziring, David, editor. | Saeed,
Shehzad A., editor. | Bousvaros, Athos, editor.
Title: Your child with inflammatory bowel disease : a family guide for
caregiving / North American Society for Pediatric Gastroenterology,
Hepatology and Nutrition ; editors-in-chief Maria Oliva-Hemker, MD,
David Ziring, MD, Shehzad A. Saeed, MD, Athos Bousvaros, MD, MPH.
Description: Second edition. | Baltimore : Johns Hopkins University Press,
[2017] | Series: A Johns Hopkins Press health book | Includes
bibliographical references and index.
Identifiers: LCCN 2017007356| ISBN 9781421423517 (pbk. : alk. paper) |
ISBN 1421423510 (pbk. : alk. paper) | ISBN 9781421423524 (electronic)
| ISBN 1421423529 (electronic)
Subjects: LCSH: Inflammatory bowel diseases—Popular works. |
Gastroenteritis in children—Popular works. | Caregivers—Popular
works.
Classification: LCC RJ456.G3 Y68 2017 | DDC 618.92/33—dc23 LC
record available at https://lccn.loc.gov/2017007356
All 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
[email protected].
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.
The facing page is an extension of this copyright page.
Notes to the Reader: This book is meant to be an educational resource for
parents of children and adolescents who have been diagnosed with Crohn’s
disease or ulcerative colitis. It contains material that can help make sense of
the bewildering amount of information that can overwhelm families when a
child is diagnosed with one of these forms of inflammatory bowel disease
(IBD). The materials contained in this book are for general education. The
book should help parents understand what is happening, or might happen, to
their specific children who have been diagnosed with a chronic intestinal
condition.
The book is not intended as a substitute for ongoing consultation with a
health care provider, and your child’s treatment should not be based solely
on what is written here. Your child’s treatment must be developed in a
dialogue between you and your child’s physician. Our book is written to
help you with that dialogue.
No statements within the text should be considered recommendations
concerning specific tests or treatments for an individual patient. The
information provided should serve as the basis for a discussion between the
family and health care provider and not as medical advice for any particular
situation. The members of the North American Society for Pediatric
Gastroenterology, Hepatology and Nutrition (NASPGHAN) stand ready to
provide expert care for any child with IBD. To obtain a list of qualified
physicians in your area, log on to the NASPGHAN Web site,
www.naspghan.org.
Drug dosage: The author and publisher have made reasonable efforts to
determine that the selection and dosage of 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 the diseases and dosages for
which they are recommended. In view of ongoing research, changes in
governmental regulations, 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 or an infrequently used drug.
Contents
List of Contributors
Preface, by Cheryl Blank, DO
Acknowledgments
Part I About IBD
1 An Overview of Inflammatory Bowel Disease
2 IBD Causes and Risk Factors
3 Why Is IBD So Difficult to Diagnose?
Part II Diagnosing IBD
4 The Symptoms of IBD
5 How to Prepare for a Visit to Your Child’s IBD Doctor
6 Office Visits and Procedures for Children with IBD
7 Laboratory Testing
8 Imaging Studies
9 Endoscopic Exams
Part III Treating IBD
10 Medical Treatments
11 Surgery
12 Managing Specific Problems
13 The Role of Nutrition
14 Complementary and Alternative Therapies
Part IV Living with IBD
15 Family Life
16 Different Ages, Different Issues
17 Following the Treatment Plan
18 School Days
19 Insurance and Other Financial Issues
Part V As a Child Grows Up
20 Transitions from School to Work and Independent Living
21 Transitions from Pediatric to Adult Health Care Providers
Part VI Additional Helpful Information
22 Where to Get Additional Help and Information
23 Frequently Asked Questions
Appendix: A Guide to IBD Medications
Glossary
Index
Contributors
Susan S. Baker, MD, PhD
Children’s Hospital of Buffalo
Buffalo, New York
Robert N. Baldassano, MD*
Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
Keith J. Benkov, MD*
The Mount Sinai Hospital
New York, New York
Athos Bousvaros, MD
Children’s Hospital
Boston, Massachusetts
Jeffrey B. Brown, MD
Children’s Memorial Hospital
Chicago, Illinois
Steven Brown, MBBS, PhD
Mount Sinai School of Medicine
New York, New York
Mitchell B. Cohen, MD
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio
Stanley A. Cohen, MD
Children’s Center for Digestive Healthcare
Atlanta, Georgia
Richard B. Colletti, MD
University of Vermont
Burlington, Vermont
Wallace V. Crandall, MD
Nationwide Children’s Hospital
Columbus, Ohio
Karen Denise Crissinger, MD, PhD
University of South Alabama
Mobile, Alabama
Carmen Cuffari, MD
The Johns Hopkins Children’s Center
Baltimore, Maryland
Fredric Daum, MD
Winthrop University Hospital
New York, New York
Marla Dubinsky, MD
The Mount Sinai Hospital
New York, New York
Adi R. Ferrara**
Bellevue, Washington
George D. Ferry, MD
Texas Children’s Hospital
Houston, Texas
Benjamin Gold, MD
Children’s Center for Digestive Healthcare
Atlanta, Georgia
Anne M. Griffiths, MD*
Hospital for Sick Children
Toronto, Ontario, Canada
Sandeep Gupta, MD
Riley Hospital for Children
Indianapolis, Indiana
Melvin B. Heyman, MD, MPH
San Francisco Children’s Hospital
San Francisco, California
Leslie M. Higuchi, MD
Children’s Hospital
Boston, Massachusetts
Jeffrey S. Hyams, MD*
Connecticut Children’s Medical Center
Hartford, Connecticut
Mark J. Integlia, MD
Cape Elizabeth, Maine
David M. Israel, MD, FRCP
British Columbia Children’s Hospital
Vancouver, British Columbia, Canada
Esther Israel, MD
Massachusetts General Hospital
Boston, Massachusetts
Robert M. Issenman, MD
McMaster Children’s Hospital
Hamilton, Ontario, Canada
Howard A. Kader, MD
University of Maryland Medical Center
Baltimore, Maryland
Marsha Kay, MD
Cleveland Clinic Foundation
Cleveland, Ohio
David J. Keljo, MD, PhD
University of Pittsburgh School of Medicine
Pittsburgh, Pennsylvania
Barbara S. Kirschner, MD
University of Chicago Children’s Hospital
Chicago, Illinois
Alan M. Leichtner, MD
Children’s Hospital
Boston, Massachusetts
David R. Mack, MD
Children’s Hospital of Eastern Ontario
Ottawa, Ontario, Canada
Laura Mackner
Nationwide Children’s Hospital
Columbus, Ohio
Lori Mahajan, MD
Cleveland Clinic Foundation
Cleveland, Ohio
Petar Mamula, MD
Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
James F. Markowitz, MD*
North Shore–LIJ Health System
New Hyde Park, New York
Jonathan E. Markowitz, MD
