Pediatric Hepatitis Report

23 10 2006

PKIDs’ Pediatric Hepatitis Report was first crafted in 2001 through a joint effort with the national Centers for Disease Control and Prevention (CDC).

Many of the sections have undergone periodic updates and are available on PKIDs’ website,
Parents find the Report useful because:

  • it explains the blood tests that need to be done and what the results of such tests mean
  • it covers the latest treatment options, reviewing the pros and cons of treatment
  • it offers the heartfelt words of parents of children affected by chronic, viral hepatitis, as well as words from the children themselves
  • it is a how-to 500+ page document that is also used by physicians when training their residents and interns.

Most recently, the sections on hepatitis A and transplants have been updated. Next on the list for updating are the treatment sections of hepatitis B and C.
When the Report was first outlined, parents of infected children decided on the content to ensure that it addressed all of the concerns and questions parents had. It is a complete resource for parents and we encourage you to use it.
Sections of the Report have been translated into Chinese, Russian and Spanish, although those sections haven’t been updated in the last three years.
If after reviewing the Report you have suggestions for content, we hope you will share those with us. We want this document to be of use and are happy to expand or alter it to keep up with the times.

Whom Do You Tell?

16 10 2006

When your child is chronically infected with hepatitis B or C, whom do you tell?  If it’s need-to-know only, then who needs to know?

This question is a biggie for parents.  Once the information is shared, you can’t take it back, so it’s worth devoting some thought to the answer.

One parent said her own mother no longer allowed the child with hepatitis to visit for fear she would infect the other grandchildren. Another parent reported one of her family members felt “morally obligated” to tell her neighbors of her child’s diagnosis.

A parent in Virginia reported telling her minister about her daughter’s newly-diagnosed hepatitis infection only to have the minister request that the child not attend Sunday school.

When parents first hear that their child has viral hepatitis, their initial reaction is to talk about it in-depth and often in order to process, examine and explore the traumatic news. Ironically, it is when parents need to talk the most about a viral hepatitis diagnosis that they should talk the least to those outside the doctor’s office and immediate family.

The problem with disclosing is we don’t know how the person receiving the news will react. 

Parents need to evaluate the true health risk that their child poses to others when assessing whether to share this information and when. In schools, daycare centers and camps, most staff should have been instructed on standard precautions.

Coaches and community volunteers should also have some working knowledge of standard precautions. And parents of infected children should teach their children from a young age simple hygiene practices like handwashing, managing their own cuts so as not to expose others to their blood, and not touching the blood or body fluids of others.

There are some assumptions of “safety” that parents can make when deciding whom to tell, yet there are a variety of gray areas. Other parents, other kids and youth organization leaders, such as those involved in scouts or sports leagues, may not be well-versed in standard precautions. So whom should parents tell, if anyone?

Medical Professionals

Most parents agree that because doctors, nurses, dentists and other healthcare workers are legally obligated to safeguard a patient’s medical information, a child’s medical condition can be safely shared with this group. Also, it may be important to the overall treatment of the child for the attending healthcare staff to know of the chronic infection when making medical decisions concerning the child.

Schools and Daycare Centers

According to Dr. Harold Margolis, former director of the Hepatitis Division at the Centers for Disease Control and Prevention (CDC), disclosure may not be necessary if a school or institution is already practicing standard precautions.

 “Students infected with HIV, HBV or HCV do not need to be identified to school
personnel, based on the assumption that school staff are using standard precautions when handling first-aid or emergency situations,” Dr. Margolis added. “Since HIV-, HBV- and HCV-infected children and adolescents will not be identified, policies and procedures to manage potential exposures to blood or blood-containing materials should be established and implemented, and parents should take an active role to ensure these are in place.”

Babysitters and Camps

Camps, like schools and daycare centers, should follow standard precautions and their staff should be appropriately trained. Parents need to be advocates in ensuring all
children who attend the camp are protected by proper precautions.

Babysitters, who come into the home, may not be so well-versed in standard

According to Dr. Margolis, “It is good practice generally for all of us to use precautions when dealing with blood and body fluids containing blood. You could make it a practice that all of your babysitters use latex gloves when handling any body fluid, followed by good hand washing. You could present this practice as a preventative measure to protect the health of both your children and the babysitter. The babysitter’s course developed by the American Red Cross has specific training on this issue. They recommend that latex gloves be made available within the household and that sitters use the gloves when handling blood or body fluids.”

Youth and Sports Events

Many parents admit that to share information about their children’s disease with the soccer coaches or Girl Scout leaders is tantamount to sharing it with the entire

If the child is participating in a sport like football or soccer, it is important to make sure the coaches, volunteers and participants all practice standard precautions.

No parent wants another child to become infected with hepatitis viruses, and no one wants to be sued by a coach, teacher or parent who claims they would have taken extra care to practice standard precautions if only they had known a child was infected with hepatitis B or C.  Nor do parents want to expose their own children to the discriminatory acts that informing invariably invites.

Play Dates and Sleepovers

The age of the child and the type of relationship the infected child’s parents have with other parents play a role in deciding how to handle play dates and sleepovers.

Obviously, if parents are good friends and have disclosed the child’s hepatitis status and the other parents will follow standard precautions, this is the best route.

Because play dates and sleepovers are not usually organized, “official” events, it is unreasonable to expect that the chaperones will know about standard precautions and will not only use them but will ensure that the children use them.

Extended Family Members and Friends

Parents report reactions from extended family members they’ve told range from “shunning” to warm support. As mentioned earlier, parents need to think carefully about who needs to be told and why.


Those parents who share their young child’s diagnosis with others often find how the information is shared is almost as important as with whom one shares it. Experts suggest a five-point plan:

• Determine who needs to be told.

• Identify their level of understanding about the hepatitis.

• Try to predict their likely response to the information and prepare yourself mentally for it.

• Tell them about the diagnosis (which includes asking them not to say anything about the hepatitis to the child or to anyone else).

• Prepare an education packet so that they can prepare themselves to deal with the reality of a child who has hepatitis.

A balance must be found, when determining whom to tell and not tell, that protects the rights of the individual and the health of us all. Every parent struggles with this issue every day.  For more complete information on this topic go to

Estate Plans

9 10 2006

Ed. note: The information in this piece has been compiled by a PKIDs mom from conversations with attorneys. You should check with your attorney before making any legal decisions.


If I were not around and had not planned for my child’s future medical needs, how would he manage? Would our savings be drained, the house lost?

Where there’s a will there’s no way . . .

A simple will is not enough to protect children whose illnesses could impact their daily lives at some point. Some PKIDs parents are also ill themselves and carry the additional burden of worrying about their own physical and mental capacities. A will does not protect your assets if you become incapacitated. It goes into effect only after you die. This means that important decisions regarding the welfare of your children may be left to the courts if you are unable to make decisions.

In addition, with only a will in place, the estate must go through probate after your death. This legal process is considerably expensive (estimated at 3-8% of an estate’s value) and takes time (usually 1-2 years). While the courts are busy ensuring that your debts are paid and accounts of assets are valid and in order, these assets could be frozen. If your family needs money to live on during this period they must go through courts to get it, and it’s possible that the courts could deny their request.

What’s the answer?

The answer is to take a “legal approach”, a polite term for something so complicated and confusing that we have to consult attorneys to do it properly! There are many options to consider depending on your situation. An attorney will help you sort through them and will most likely recommend placing your assets in a trust. It’s best to select an attorney experienced in living trusts (and special needs trusts, if applicable). The type of trust depends on the needs of your children and the extent of their disability, but a good place to begin for most people is with a living trust.

How does a living trust work?

Briefly, at the time you set up the trust, you transfer assets from your name to the name of your trust. You control the trust while you’re alive and can specify the distribution or management of assets in the trust after your death. As trustee you can change or cancel the trust and do anything with the assets in the trust that you could before (e.g., buy or sell the assets).

You may choose to name a successor trustee such as a close friend or relative to handle the estate after your death. You also have the option of hiring a bank or trust company as corporate trustee if you prefer. They charge a fee but can manage your assets if you desire professional help, become incapacitated or die.

What are the benefits of a living trust?

You’ll gain peace of mind by knowing that you have:

  • Saved time and money by avoiding probate at death—assets can be distributed more quickly to beneficiaries; or you can specify that assets remain in the trust until you want them distributed.
  • Maintained privacy by eliminating the public court probate process.
  • Prevented court control of assets should you become incapacitated.
  • Prevented court control of minors’ inheritances.
  • Reduced or eliminated estate taxes.
  • Made it difficult for other parties to contest since your wishes are specified and legally documented.
  • Protected dependents with special needs.
  • Maintained control of your assets and kept them together in one plan.

You don’t have to be rich to set up a trust. Your house may be the sole asset you want to protect for your child so he will have a place to live. If your child’s illness causes him to depend on the government for support at some point, without proper planning he could be forced to sell the house in order to qualify for those benefits. Assets such as real estate, stocks, CDs, bank accounts, insurance, jewelry and furniture can be included in the trust. Laws are revised constantly and vary by state, so only an attorney can advise you of the best way to plan for your family.

What do I need to know about government benefits?

There are various types of government benefits available to dependents who need long-term or lifetime care, and PKIDs parents should have some familiarity with the subject if they face the possibility that their child’s illness could disable them at some point. Trusts should be specially designed to cover these needs or to be easily changed to cover them at the point the child becomes disabled.

As a brief overview, the benefits which most of us in the U.S. have heard of are:

Pension or insurance-type benefits such as Social Security Disability Income and Medicare. These benefits are entitlements based on contributions and are not dependent on a person’s financial need.

Welfare or needs-based benefits, which require a person to be disabled (strictly defined by the government) and to meet financial criteria. Included in this type of benefit are Supplemental Security Income, Medicaid, food stamps and Section 8 housing subsidy.

Sliding scale fee benefits, which require a disabled person to pay the government for services in accordance with his/her ability to pay. Department of Human Services and Department of Rehabilitation Services are examples of this type of benefit.

How do these benefits affect my estate plan?

If your child becomes ill and disabled you need to be sure that he/she does not lose eligibility for governmental benefits. In this case, a primary purpose of your trust would be to protect the family’s assets and the individual’s inheritance from being counted as an asset by the state or federal government.

Ask your attorney about setting up a special needs trust which could be implemented when needed. The special needs trust (or discretionary supplemental needs trust) is set up to provide those goods and services for your child that would not otherwise be available from a local, state or federal government agency. This type of trust provides funds that supplement government benefits rather than substitute for them. The assets you place in a properly worded special needs trust for your child would not be considered countable assets of the child (beneficiary), and are thereby protected.

Should I walk or run to my attorney?

While there is a cost for setting up a trust, it is insignificant when compared to what it can save in terms of probate time and expense, estate taxes, inheritance and when necessary, living expenses for your beneficiaries. Trusts also may provide protection of assets from creditors. For example, if you suffer a long, expensive illness and accumulate huge medical bills before you die, a trust may prevent your heirs from having to sell everything you intended to leave for them in order to pay those bills. This is important to discuss with your attorney as well.

PKIDs families are more likely than most people to need these safeguards since our children, and often a parent as well, have serious or life-threatening illnesses. This short discussion was designed to raise questions which you can discuss with a professional to help you develop a plan to provide for your children.

Standard Precautions

6 10 2006

How do we avoid infections?  Without rolling around in a plastic bubble spraying the world with disinfectant, we can’t avoid all of them, nor would we want to.  Some germs are good for us, as we are for them, and we form a mutualistic relationship with each other, meaning both organisms, although different from each other, live in close association to their mutual benefit.

Too much biology, right?  Let’s get to the good stuff, where we find out how to stay (almost) infection-free and still live normal lives.

There are four steps we can take to help keep ourselves and our loved ones healthy:
• Wash hands a lot (
• Get immunized (
• Disinfect our work and home areas (
• Practice standard precautions (

Today we’re focusing on standard precautions.  For practical purposes in daily living, standard precautions means assuming that every person’s blood and body fluids are infectious for HIV, hepatitis B virus (HBV), and other bloodborne pathogens.

The safest way to go about living these days is to assume everyone is infected with something. People of all colors, rich and poor, fat and thin, old and young are chronically infected with hepatitis C virus (HCV), HBV, HIV, and other diseases. Forty to 90 percent of these folks don’t know they’re infected.

It’s impossible to identify all those living with an infectious disease. The only way to try and keep ourselves and our families reasonably safe is to learn a practical approach to standard precautions. At first, paranoia of everyone and everything is common, but eventually the precautions become habits—like turning the lock on a door, or stepping on the brake at a red light. They become normal, daily precautions.

The primary thing to remember with standard precautions is to always have a barrier between our skin and mucous membranes (around the eyeballs, gums, and inside the nose), and the (potentially) infectious substance. Go to a medical supply store and buy some latex gloves. Keep them in the house and car.  If there are no gloves around and we need to deal with someone’s body fluid, we can put sandwich baggies or trash can liners over our hands.  We can also use a sanitary napkin or thick, rolled-up towel to collect the fluid or staunch the flow of blood.

Keep prescription glasses on to protect the eyes (and to see what’s happening) or put on sunglasses.  A scarf can be tied around the face, like the masked bandits used to do, to protect the nose and mouth. 

Use a one-part bleach to ten-part water solution, or another disinfectant for cleaning up substances. Including our own! As soon as the clean-up is done, throw away the disposable protective items (gloves, etc.) and wash hands thoroughly.

As soon as possible, cover the hands again and remove any non-disposable clothing and wash it appropriately. Common sense guides us in this. We don’t want to go through all of the precautions only to bare hand our pants which are covered in someone else’s body fluid.

Make sure all cuts and abrasions covered with a waterproof bandage. Be careful with badly chapped skin. It can crack and allow fluids to enter and exit. These precautions are a two-way street. We may be some of the millions unaware that we’re living with an infectious disease.

Only a parent knows if a child is old enough to understand these precautions. Practicing them with our kids would be useful for the whole family. If the kids are too young to understand what we’ve outlined, there are a few things we can try to help the younger members of the family participate in standard precautions.

Set aside a non-work day to role-play this with the kids. Call it “Family Safety Day.” This would also be a good day to practice evacuating the house in case of fire and all those other safety rules we seldom rehearse.

First, remember to keep the kids’ cuts covered with a bandage which won’t let anything in or out. To help the kids understand how invisible germs can pass from one person to the next, put glitter on a child’s hands and let him/her go to the bathroom, play with family members, and pick up a cracker (without actually eating it). Go back to the beginning of the journey and walk him/her around the house, following the trail of glitter. This will help demonstrate how we can pass germs (and other things) to each other without knowing it. To press home the point, we should put glitter on our hands, too.

Have one member of the family be “bleeding” ketchup. Pretend to be a young child and run for an adult when the “blood” is visible.  Have a young child go through the same scenario several times.  Then pretend there’s no adult around and show the children how to use a coat or towel as a barrier between them and the blood.

It’s important that kids learn not to reach out and touch another person’s blood or body fluid. One way to help them understand (and this is kind of gross) is to ask them if they would touch someone else’s poop or nose gunk. Most kids, no matter how young, will say no. Once we get that all important “no”, explain that blood is really personal and they don’t want to touch anyone else’s blood.

This approach is necessary only for a few years. Once they get to be five or six, we can start explaining more.

A few general rules for everyone to remember would be: don’t share razors, toothbrushes, manicure tools, nail clippers, hypodermic needles, cocaine straws, body piercing equipment, tattooing equipment—anything that can puncture and/or is a personal grooming item.

Standard precautions as practiced by healthcare professionals cover a wide range of topics, including sharps disposal, ventilation devices (mouth pieces for resuscitation), specimen handling, and other opportunities for the spread of infection which we’re unlikely to come across in daily living.

Today’s tips are meant to be a more practical approach for everyday living.


Nutrition and hep+ kids

2 10 2006

Parents of HBV+ and HCV+ kids frequently ask if there are any nutritional issues they should know about.  We answer by saying yes, there are.

The liver metabolizes foods, beverages and most medications. All kids, including those children chronically infected with viral hepatitis, need to eat a well-balanced diet and receive adequate exercise and rest.

Children with advanced end-stage liver disease may need to follow specific nutritional guidelines issued by their pediatric gastroenterologist or a registered dietitian who works closely with the child’s specialist, but the vast majority of children and adolescents with viral hepatitis are not in this category.  For most children, no special diet is currently recommended, but there are some issues worth considering.

Note: consult a pediatric gastroenterologist and a registered dietitian before changing your child’s diet (see PKIDs’ disclaimer in the middle column – sorry, but we all have to have them).


Weight has a direct impact on the health of any child, including a child with chronic viral hepatitis.  All kids should maintain a healthy weight.  Too much or too little body mass can invite a multitude of health risks.

Extremely overweight or obese children with chronic viral hepatitis can add new complications to their liver, such as fatty deposits in the liver, and accompanying liver inflammation, called non-alcoholic steatohepatitis. 

Parents should consult with their pediatric gastroenterologist and a registered dietitian before ever placing a child with viral hepatitis on a weight loss program.

Some children with chronic viral hepatitis experience a loss of appetite.  Parents can try to encourage eating by serving several small meals during the day, which are more easily tolerated than three large meals.

An adequate amount of complex carbohydrates (e.g. pasta, rice, wholemeal breads, potatoes and whole grain cereals) can provide calories and help maintain weight for those children who have difficulty maintaining body mass.  Adequate rest and moderate exercise can also help. 

There are several age-appropriate oral supplements available for those children who may require additional calories to gain or maintain weight above what they are able to consume in a normal diet.  Consult with your gastroenterologist and a registered dietitian for recommendations.


Adequate protein intake is important to maintain muscle mass and to regenerate liver cells in patients without cirrhosis—just remember that more is not always better.  Some children without cirrhosis may need up to two or three grams of protein per kilogram of body weight daily to regenerate liver cells; adults may sometimes require 1 to 1.5 grams of protein per kilogram of body weight.

Protein requirements vary with age and medical condition.  The RDAs for protein: 1-10 years = 1-1.2 grams/kilogram and > 10 years = 0.8-1 gram/ kilogram.  The bottom line is that protein intakes should not be increased beyond the RDA goals unless advised by a professional.  Children with cirrhosis need an individual nutrition plan from their pediatric liver specialist and registered dietitian.


Excessive iron intake may damage the liver, and studies indicate high iron levels reduce the response rate of adult patients with hepatitis C to interferon treatment.  People with chronic viral hepatitis infections should avoid iron supplements if they have elevated iron levels or cirrhosis.

Several studies have documented a correlation between iron overload and a poor response to interferon treatment.  Articles in Seminars in Liver Disease and Digestive Disease Science indicate the need for additional research into an apparent link between excess iron levels and increased liver damage in adult patients with chronic viral hepatitis.  Increased iron deposition in the liver may be associated with more advanced liver fibrosis in patients with HCV infections.

Some researchers have speculated that the monthly loss of iron due to menstrual flow may be one reason women tend to have lower liver enzymes and less severe liver damage from viral hepatitis than men.  However, much more research is needed to understand the role of iron in the progression of viral hepatitis in humans.

There have also been studies evaluating the possible correlation between racial differences in the relationship between hepatitis C infection and iron stores.  One study showed that a greater proportion of African Americans than persons of other races respond to HCV infection with an increase in iron stores.  This may partially explain the reduced responses of African-American HCV-positive patients to antiviral treatment.

Another study showed that African American chronic HCV patients have milder liver fibrosis than Caucasian American patients with similar HCV durations.  These differences in liver fibrosis were not explained by a change in hepatic iron loading.  A great deal more research is required in this area to make firm recommendations about the role of iron in HCV management.


Cirrhotic patients with ascites (accumulation of fluid in the abdomen) should be on a salt-restricted diet.  Consult your specialist and registered dietitian to determine the actual level of salt restriction required.  Adherence to a salt restricted diet can sometimes severely reduce the caloric intake in children.


The liver is where most medications are metabolized, and some medications and herbs can be toxic to the liver.  Parents of children with viral hepatitis must exercise caution when giving medications and herbal supplements to their child.  Prescriptions and over-the-counter medications, including vitamins and herbal supplements, should be discussed with a doctor or pharmacist before being considered.

For most children with chronic viral hepatitis, occasional use of over-the-counter products to treat cold symptoms is probably safe, but asking the child’s liver specialist about specific drugs is the best way to keep a child’s liver healthy.  Parents should read labels carefully and contact their pediatrician with any questions.

Occasionally, even asymptomatic viral hepatitis-infected children may have unrelated medical procedures and need anesthesia at some time in their lives.  In those situations, parents should inform their child’s anesthesiologist of the infection, so the doctor can make the safest medication choice for the child’s liver.


For everyone with viral hepatitis, one of the most important toxins to avoid is alcohol, which can accelerate liver disease by adding more stress to the liver.  As children with chronic viral hepatitis approach adolescence, they must be educated about the particular dangers that alcohol poses to their livers.

These adolescents and young adults have an even more compelling reason to never experiment with or abuse alcohol or drugs.  Alcohol is a dangerous ingredient in the lifestyle of any young person, but that danger is magnified for the infected adolescent or teen.

Illicit drugs are toxins that are also processed through the liver, and should likewise be discussed during adolescence or earlier and strongly discouraged.