Your Child with Inflammatory Bowel Disease: A Family Guide for Caregiving

by North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, Maria Oliva-Hemker (Editor), David Ziring (Editor), Shehzad A. Saeed (Editor), Athos Bousvaros (Editor)

Overview

A comprehensive guide to easing the discomfort of your child’s inflammatory bowel disease.

Inflammatory bowel disease (IBD) is a common condition in children and adolescents. Parents and other family members typically have many questions about the diagnosis, symptoms, and treatments associated with various forms of IBD including Crohn's disease, ulcerative colitis, and indeterminate colitis. In this book, medical experts explain all you need to know about IBD and answer important questions, including:

• What are inflammatory bowel diseases, Crohn's disease, and ulcerative colitis?
• Is there a cure for IBD?
• How is IBD going to affect my child's daily life?
• Will my child's diet change?
• Can my child still play sports?
• Will my child need surgery?
• What are the side effects of commonly prescribed medications?
• What challenges may my child face at school and socially, especially as he or she grows older?

This new edition has been thoroughly revised with updated scientific evidence. The chapters on medical therapies have been expanded to include robust discussions of emerging biologic medications and forms of nutrition used for treating IBD. A new chapter on complementary and alternative therapies expands on this topic.

Product Details

ISBN-13:	9781421423524
Publisher:	Johns Hopkins University Press
Publication date:	12/15/2017
Series:	A Johns Hopkins Press Health Book
Sold by:	Barnes & Noble
Format:	eBook
Pages:	296
File size:	4 MB
Age Range:	18 Years

About the Author

The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition is the premier organization for physicians caring for children with digestive disorders in North America. NASPGHAN strives to improve the care of infants, children, and adolescents with digestive disorders by promoting advances in clinical care, research, and education. Maria Oliva-Hemker, MD, is the Stermer Family Professor of Pediatric Inflammatory Bowel Disease at the Johns Hopkins University School of Medicine and the director of the Division of Pediatric Gastroenterology, Hepatology, and Nutrition at the Johns Hopkins Children's Center. David Ziring, MD, is the associate director of the Cedars-Sinai Pediatric IBD Program and an associate clinical professor at the David Geffen School of Medicine at UCLA. Shehzad A. Saeed, MD, is a professor at Wright State University's Boonshoft School of Medicine, the chief medical value based care officer at Dayton Children's Hospital, and the chief medical officer at Dayton Children's Health Partners. Athos Bousvaros, MD, MPH, is an associate professor at Harvard Medical School, the associate director of the Inflammatory Bowel Disease Center, and the associate chief of the Division of Gastroenterology, Hepatology, and Nutrition at Boston Children's Hospital.

Maria Oliva-Hemker, MD, is the Stermer Family Professor of Pediatric Inflammatory Bowel Disease at the Johns Hopkins University School of Medicine and the director of the Division of Pediatric Gastroenterology, Hepatology, and Nutrition at the Johns Hopkins Children’s Center.
Shehzad A. Saeed, MD, is a professor at Wright State University’s Boonshoft School of Medicine, the chief medical value based care officer at Dayton Children’s Hospital, and the chief medical officer at Dayton Children’s Health Partners.
Athos Bousvaros, MD, MPH, is an associate professor at Harvard Medical School, the associate director of the Inflammatory Bowel Disease Center, and the associate chief of the Division of Gastroenterology, Hepatology, and Nutrition at Boston Children’s Hospital.

Table of Contents

List of Contributors
Preface
Acknowledgments
Part I
1. An Overview of Inflammatory Bowel Disease
2. IBD Causes and Risk Factors
3. Why Is IBD So Difficult to Diagnose?
Part II
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
10. Medical Treatments
11. Surgery
12. Managing Specific Problems
13. The Role of Nutrition
14. Complementary and Alternative Therapies
Part IV
15. Family Life
16. Different Ages, Different Issues
17. Following the Treatment Plan
18. School Days
19. Insurance and Other Financial Issues
Part V
20. Transitions from School to Work and Independent Living
21. Transitions from Pediatric to Adult Health Providers
Part VI
22. Where to Get Additional Help and Information
23. Frequently Asked Questions
Appendix
Glossary
Index

What People are Saying About This

Kimberly Frederick

"This is an invaluable resource for any family living with inflammatory bowel disease. Written clearly and accessibly, it covers all the important aspects of IBD. It’s a wonderful companion guide, full of information, support, and resources that will help a child and his or her family manage all facets of the disease."

Laura Wingate

This is an invaluable guide, full of information and resources that can help families manage all facets of inflammatory bowel disease.

From the Publisher

This is an invaluable guide, full of information and resources that can help families manage all facets of inflammatory bowel disease.
—Laura Wingate, Crohn's and Colitis Foundation

Editorial Reviews

Reviewer: Jonathan Cordova, D.O.(NorthShore University HealthSystem)
Description: This is the second edition of a guide for parents and caregivers of children with inflammatory bowel disease (IBD). It is a great source of information about the diagnosis, what it means, and testing and management options. In a stepwise fashion, the authors go through definitions and terminology, explain basic concepts, and discuss aspects of the process such as blood tests, imaging studies, endoscopic evaluation, and medications commonly used as treatment. Illustrations and figures throughout the book help clarify difficult concepts. Numerous tables and charts list signs and symptoms of disease as well as frequently used medications. The last two sections of the book discuss what it is like to live with IBD, both as a patient and a family member. A wonderful section of frequently asked questions is useful for quick and easy reference. The previous edition was published in 2010.
Purpose: The purpose is to educate families of children living with inflammatory bowel disease about the disease and expected course of action. The authors clearly state this book should be used as a reference to help guide dialogue between families and medical teams and should not be used by itself for medical decision making.
Audience: The audience is parents and caregivers of children with inflammatory bowel disease, and the book details a complicated disease in a very easy way to understand. The authors are nationally and internationally recognized experts in pediatric inflammatory bowel disease.
Features: The first half of the book goes through an extensive explanation of the disease, how it may manifest, and what testing may be required during the initial diagnosis process. It then describes how the disease is treated and focuses on medications and other lifestyle management strategies, including dietary and more holistic approaches. The authors do a great job of explaining the pros and cons of each medication and why certain management options are chosen over others. As alternative medicine has been playing a larger role in the treatment of some medical diseases, the authors offer advice on dietary therapy and complementary medical approaches, noting that many of these should be used in combination with well studied medical therapy as recommended by the treating physician. The latter part of the book discusses what it is like to be a patient dealing with IBD and answers many questions that families may have about how it will affect life on a day-to-day basis, addressing questions such as: Can my child with IBD play sports? How will he transition to college? Can she have a family of her own when she gets older? These questions give families some insights into what others in the same situation are thinking and help open a dialogue between them and the treating physician. I would have liked more discussion of the cancer risks for many of the immunomodulators and biologics that are used for treatment. There is a brief mention of the increased risk of lymphoma and, more specifically, hepatosplenic T-cell lymphoma. Many of these medications have a black box warning about these cancer risks, and parents are often fearful about starting them, so providing more detail and specific statistics could help parents be better informed and comfortable with these medications, while also noting that uncontrolled IBD places their children at higher risk for colon cancer. I also would have liked more discussion on what happens when medications don't work as expected and why physicians change from one class of medication to another. Often it is because the inflammatory pathway for a child's IBD may not be responding to a specific class of medication and the child may benefit from a different anti-inflammatory or a combination of medications. It should also be noted that most of these medications are not FDA approved for children and that their use is off-label in most instances.
Assessment: The authors do a great job of explaining a very complex disease in a manner that is easy to follow and understand. This is a must read for any family who has a child with a diagnosis of inflammatory bowel disease, new or previously established. The authors offer insights into newer medications that are being used in the treatment of IBD, which justifies replacing the previous edition. As a pediatric gastroenterologist who cares for patients with IBD, I strongly believe that after my patients and their families read this book, they will feel more empowered to take ownership of their disease management and prepare themselves for ongoing success.

Doody's Review Service

An interesting and easy read . . . anyone who has been diagnosed with a condition that fits within the IBD definition would also benefit from the read.
--Nursing Times

This is an invaluable resource for any family living with inflammatory bowel disease. Written clearly and accessibly, it covers all the important aspects of IBD. It's a wonderful companion guide, full of information, support, and resources that will help a child and his or her family manage all facets of the disease.
--Kimberly Frederick, LCSW, MSW, Crohn's & Colitis Foundation

From the Publisher

An interesting and easy read . . . anyone who has been diagnosed with a condition that fits within the IBD definition would also benefit from the read.

Nursing Times

This is an invaluable resource for any family living with inflammatory bowel disease. Written clearly and accessibly, it covers all the important aspects of IBD. It’s a wonderful companion guide, full of information, support, and resources that will help a child and his or her family manage all facets of the disease.

Kimberly Frederick

An interesting and easy read... anyone who has been diagnosed with a condition that fits within the IBD definition would also benefit from the read.

Nursing Times - Paul Watson