Hepatitis

Pediatric Hepatitis Report

PKIDs has produced the first Pediatric Hepatitis Report in the nation. This report, made possible by partial funding from the Centers for Disease Control and Prevention, is available for downloading at no cost to you (see below).

Selected sections of the report are available in Spanish, Russian, and Simplified Chinese. Clicking on one of the links below will take you to a PDF table of contents for that language. Clicking an item in that table of contents will display that section.

PHR in Spanish

PHR in Russian

PHR in Chinese

Because the report is so large, we have broken it up into multiple PDF documents for your convenience. You need Adobe Reader (a free download) to view the PDF files. Call 1-877-55-PKIDS or 1-360-695-0293 for more information. Periodically, this report is reviewed and updated. See the year in red after each section to determine when it was last updated.

Preface

Foreword

Acknowledgements

Introduction

Chapter 1: Hepatitis A: The Most Common Hepatitis in Children. Spread by food and water contaminated by the feces of infected people, an estimated one-third of Americans have been exposed to this virus, most during childhood. 2006

Chapter 2: Hepatitis B: More than one-third of the world's population has been exposed to hepatitis B. Most infected at birth or during childhood develop chronic, long-term infections.

2.1 What is Hepatitis B? How is hepatitis B transmitted? How does this virus replicate in a child's liver? Why is this virus able to flourish without triggering the immune system when infants and young children are infected? 2003

2.2 The Importance of the Hepatitis B Vaccine. How is the hepatitis B vaccine able to safeguard people from this virus? Why is immunization at birth important? When are vaccine boosters needed? 2003

2.3 Follow-Up Tests for Children with Hepatitis B. Once children are diagnosed, it is important to monitor the health of their livers regularly. Here is a schedule of tests that the country’s leading experts recommend for children with chronic hepatitis B. 2003

2.4 Treatment Options for Children with Hepatitis B. What are the latest drug therapies available to children with chronic viral infections? Interferon Alpha, Pegylated Interferon and Lamivudine continue to lead the list of treatment options, but more are on the way. 2010

2.5 Parent Story: When a Child Has Hepatitis B. Facing the tough everyday choices as a child with hepatitis B reaches second grade. 2001

2.6 Parent Story: The Day My Child Recognized His Mortality. Her son was 8 when he realized he would die someday. 2001

2.7 Parent Story: The Complexity of Play Dates. Even a visit to McDonald's requires a risk assessment and possible disclosure when a mishap occurs. 2001

2.8 Hepatitis B Vaccine Requirements by State. 2005

2.9 Hepatitis B Infection Rates by Country. 2003

Chapter 3: Hepatitis C. About 2.8 percent of the world is chronically infected with hepatitis C. Because it takes years for liver disease to develop, many adults and children do not yet know they’re infected. Explore how the virus infects, replicates and damages the liver.

3.1 What is Hepatitis C? How are children infected with hepatitis C today? How does the virus infect and damage their livers over decades? Are children better at overcoming chronic infections than adults? Why is there no hepatitis C vaccine? 2003

3.2 Follow-Up Tests for Children with Hepatitis C. Once children are diagnosed, it is important to monitor the health of their livers regularly. Here is a schedule of tests that the country’s leading experts recommend for children with chronic hepatitis C. 2003

3.3 The Latest Treatment Options for Children with Hepatitis C. Doctors who treat children infected with the hepatitis C virus (HCV) are essentially starting from scratch. There are only a handful of drugs available to treat this infection, and they have not been extensively studied in children. 2010

3.4 Parent Story: Adjusting to Hepatitis C in Your Child. How one family learned to use standard precautions when a child was found to be infected with hepatitis C. 2001

3.5 Parent Story: Being a Teen with Hepatitis C. The loneliness of a teen with hepatitis C. 2001

3.6 Hepatitis C Infection Rates by Country. 2003

Chapter 4: Hepatitis D: The Most Virulent Hepatitis Virus of All. This unique virus can only infect a person who is already chronically infected with hepatitis B. This virus infects 15 million people worldwide, primarily injecting drug users and residents along the Mediterranean. 2001

Chapter 5: Hepatitis E: The Leading Cause of Acute or Short-Lived Hepatitis. Researchers estimate hepatitis E, transmitted by food and water contaminated by the feces of infected people, has infected close to 20 percent of the world. 2001

Chapter 6: How Viral Hepatitis Impacts the Liver. The liver is the largest internal organ. Learn how the liver functions and how hepatitis viruses cause liver inflammation, scarring, cirrhosis and cancer. This section explains what tests doctors perform to evaluate liver health.

6.1 The Liver: Assessing the Silent Progress of Liver Disease. What function does the liver serve, and how does viral hepatitis impact it? What tests do physicians perform to evaluate liver damage? 2003

6.2 Parent Story: When Your Child Has a Liver Biopsy. A mother describes in detail her daughter’s liver biopsies. Her daughter, who has hepatitis B, underwent liver biopsies at age 13 months and again at age 32 months. 2001

Chapter 7: Clinical Trials. Most drugs used to treat children with viral hepatitis have only been tested in adults. As a result, many children must enroll in clinical trials and try experimental drugs to treat their liver disease. Here is what parents should know about clinical trials.

7.1 How Clinical Trials Are Conducted. In the world of viral hepatitis today, researchers have had limited time and limited numbers of young patients to study in the search for a cure. Here is how clinical trials are carried out. 2003

7.2. Directory of U.S. Hospitals with Pediatric Gastroenterology Departments. 2005

7.3 Parent Story: Following Directions, Following Hope. Armed with syringes, bottles of interferon and candy incentives, a parent of a 3 year-old struggles with regular injections in the pursuit of a cure. 2001

7.4 Parent Story: Enduring a Clinical Trial, at Age 9. A parent recounts a leap of faith as her child became one of the first young patients to undergo the interferon-ribavirin combination treatment for hepatitis C. 2001

Chapter 8: Health Issues Surrounding Viral Hepatitis. When a child is infected, parents must know how to choose a doctor, how to practice standard precautions and even how to teach an adolescent safer sex practices. Caregivers must also know which over-the-counter medications can be used and if certain herbal supplements, such as milk thistle, are safe.

8.1 How to Choose a Doctor. Parents must choose a pediatrician and a specialist, such as a pediatric gastroenterologist who specializes in viral hepatitis in children, whom they trust and like. Here are some features to look for. 2001

8.2 Should Parents Worry When Infected Kids Play Sports? Participation in sports can increase the chance of blood spills. Should infected children be barred from sports activities? The experts say no. 2001

8.3 What to Do When a Child Bites. Biting is common in toddlers, but when the child is a hepatitis B or C carrier, it’s a parent’s worst nightmare. Here are some ways to handle a volatile phase. 2001

8.4 A Guide to Standard Precautions. If a household member has chronic viral hepatitis, it is essential that everyone make standard precautions a daily habit. Here’s how to teach children health safety. 2001

8.5 The Value of Clean Hands. Washing hands is a great way to prevent the spread of hepatitis A and other viruses and germs. Here’s how to make hand washing a habit for all family members. 2001

8.6 Which Over-the-Counter Painkiller Is Safe? Ibuprofen or Acetaminophen? Concerned parents want to know. Doctors say either is safe, if taken as prescribed. Find out the strengths and weaknesses of each medication. 2001

8.7 Complementary and Alternative Medicines: Are They Safe? Many parents give their infected children milk thistle, but how safe is it? Until more studies are done on children, medical specialists remain skeptical. This primer reviews herbal supplements and other treatments and how they impact liver health. 2006

8.8 Nutrition for Those with Viral Hepatitis. While little has been written about nutritional guidelines for infected children, there are some insights to be gained from adult experiences. 2006

8.9 A Guide to Safer Sex. Viral hepatitis, especially hepatitis B, is frequently sexually transmitted. Sexually-active teens with viral hepatitis need to know how to practice safer sex to prevent transmitting their infection to others and to safeguard themselves against new infections. 2001

8.10 Managing Your Child’s Blood Draws and Injections. Here are some tips, from an experienced parent, on how to lessen the anxiety of trips to the doctor, and some insights into administering interferon injections at home. 2001

8.11 Parent Story: Parenting an Athletic Child with Viral Hepatitis. The challenge of ensuring health safety when your son is a perpetual motion machine. 2001

8.12 State-by-State Directory of Health Departments. These departments collect infectious disease data and establish health care policies, including the teaching of standard precautions. 2005

Chapter 9: Liver Transplants. When liver disease advances rapidly in children and they reach end stage liver disease, a liver transplant may be required.

9.1 Liver Transplants in Children. Children with viral hepatitis account for a small percentage of the pediatric transplant population. But adults with hepatitis B and C account for more than half of all transplant patients. 2006

9.2 Liver Transplant Centers Directory. A directory of hospitals that perform liver transplants on children. 2005

Chapter 10: How to Talk to Your Child and Others About Viral Hepatitis. One of the most difficult challenges parents face is deciding whom to tell about their child’s viral hepatitis. Equally difficult is disclosing the infection to the child. Here’s some help.

10.1 Whom to Tell, and Not Tell. You’ve just heard your child’s diagnosis, you’re scared and desperately need to talk about what’s happening to your child and your life. But before you spill the beans, think carefully. 2001

10.2 How to Talk to Children About Viral Hepatitis. From the toddler to teen years, parents need a communication plan to convey the critical information an infected child needs. Here are insights from parents and experts. 2001

10.3 How to Disclose to Your Child. When should a parent disclose? How should they tell their children? What will a child ask? Two experts who have worked with hundreds of families share their insights. 2001

10.4 Parent Story: Deliberate Deceits. A mother recounts how she learned the hard way about when and with whom to discuss her son’s viral hepatitis. 2001

10.5 Parent Story: One Mother’s Guidelines. This mother decided the information belonged only to her son. “It is his body and his life, and he deserves the chance to handle it in his own way. I should not and will not ruin it for him.” 2001

10.6 Parent Story: Telling a Child the First Time. A parent examines her fears as she plans to disclose a hepatitis B diagnosis to her adopted daughter. 2001

10.7 Parent Story: Breaking the News. A parent recalls how she disclosed to her daughter, and how the daughter promptly told her best friend. 2001

10.8 Parent Story: Sharing Information Strategically. A parent recounts how she shared information with friends, teachers and her own parents. 2001

Chapter 11: Civil Rights Protections for Children with Viral Hepatitis. In the United States, three federal laws are critical in protecting children with viral hepatitis against discrimination in schools, daycare centers, athletic programs, camps and other areas of daily life.

11.1 Legal Protections for Children with Infectious Diseases. Federal and state laws protect the privacy and integrity of people with disabilities to integrate them fully into their communities. Here are the legal protections offered to children with viral hepatitis. 2006

11.2 Preventing Discrimination in Advance. This is a sample letter, written by an attorney, which one couple sent to their daughter’s daycare center to ensure no one discriminated against her. 2006

11.3 National Association of State Boards of Education Sample Policy on HIV. This statement offers school districts an excellent model policy for protecting the health and privacy of all students, regardless of their infectious disease status. This document addresses HIV and can easily be adapted to include hepatitis B and C. 2006

11.4 Parent Story: When Schools Discriminate. A parent shares her family’s hard road to equal treatment as they dealt with their daughter’s childcare center. 2001

11.5 Parent Story: How the ADA Saved the Day. A parent shares how a local disability rights organization and the ADA helped when a daycare center suddenly dismissed her daughter with hepatitis B. 2001

11.6 Nationwide Directory of Advocacy Organizations. This is a state-by-state directory of disability rights organizations available to parents whose children have infectious diseases. 2005

11.7 State-by-State Directory of ACLU Chapters. 2005

11.8 State-by-State Directory of Education Departments. If parents have questions about the legality of procedures used by their local school departments, they should contact their state’s department of education. 2005

11.9 Federal Department of Education Regional Offices. The U.S. Department of Education’s Office of Civil Rights (OCR) enforces five federal statutes that prohibit discrimination against students with disabilities in education programs. 2005

11.10 State-by-State Directory of Insurance Bureaus. If parents think their health insurance provider is not providing proper coverage, these insurance regulators can provide information and advocacy services. 2005

11.11 Health Insurance. Parents need to know both their state's regulations and consumer safeguards, as well as federal laws, to know what their insurance plans will and will not cover. 2006

Chapter 12: Getting the Support You Need. Parents facing chronic illness in their families need friends and parents in similar circumstances that they can talk to. Parents whose children have viral hepatitis have unique needs as they face uncertain futures.

12.1 Finding the Right Support System. A support system, whether it’s another parent, an e-mail list or a group organized by an area hospital, can be a lifesaver. Here’s an overview of support groups and how they are structured. 2001

12.2 How to Start Your Own Support Group. If you can’t find a group that meets your needs, here’s how to form your own support group. 2001

12.3 Support Group Clearinghouse Directory. Here’s how to find lists of support groups nationwide. 2005

12.4 Coping with Depression. The constant pressures of a child’s viral hepatitis can cause temporary or severe depression. Some drugs, including interferon, can also lead to depression. 2001

12.5 Estate Planning for Families with Viral Hepatitis. Having a child with special needs or who may require a liver transplant one day requires parents to plan for those possibilities when writing their wills. Here are some insights into how to plan a financial legacy that can benefit everyone. 2001

12.6 Letter from a Mom with Hepatitis C to Her Son. Can families with viral hepatitis ever be normal? One mom writes to her son, who also has hepatitis C, about that issue. 2001

12.7 A Son’s Perspective. A 12 year-old boy with hepatitis C writes about his life and his viral hepatitis. 2001

Chapter 13: Glossary of Viral Hepatitis-Related Terms. This glossary describes the medical terms frequently used by doctors and researchers when addressing viral hepatitis and liver health. 2001

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Important disclaimer: The information on pkids.org is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.


Information is the power
parents have over disease.