Juvenile Rheumatoid Arthritis

Quality of Life Issues

Dealing With Emotional Issues

Your child may feel angry or sad about having arthritis. But be aware that you as parents, siblings and other family members may also have troubling feelings about the disease and its effect on the family. Learning how to cope with arthritis will benefit everyone.

When you are first told your child has arthritis, you might feel shocked, numbed or disbelieving. You might also feel guilty, and ask yourself if something you did or didn't do caused your child's arthritis. While these thoughts are common to all parents whose children are ill, remember that you are not the cause of your child's arthritis.

The child with arthritis may feel many different emotions. Children can feel hurt by an illness that isn't their fault, blame parents for the illness, engage in self-pity or become angry because of restrictions on activities. They may also resent other children who do not have the disease, including their brothers and sisters.

Other children in the family may feel left out and resentful because of the amount of time and attention the child with arthritis requires. Or they may feel guilty, as if they had somehow caused the illness.

Children may overidentify with the brother or sister with special needs. Some feel a pressure to achieve or make up for what their sibling can no longer do. Others want to involve themselves in caregiving to the point that they give up their own normal activities. In these cases, try to help siblings find other ways to deal with their feelings. Let brothers and sisters settle their own differences. Whenever possible, encourage siblings to talk with peers who live in homes with similar concerns.

How You Can Help

The key to dealing with all these emotions is to talk about them with one another. Your attitude toward arthritis will affect the way your child feels about arthritis. Talk to your child about how she feels about the illness. Allow your child to express her anger about arthritis from time to time.

Expect your child with arthritis to behave as correctly as other children and have the same responsibilities. Avoid giving her special privileges. Your child will benefit by doing chores that she is physically able to do.

Encourage your child to learn as much as possible about arthritis and about her treatment program. Older children can be responsible for taking medications on time, reporting any medication side effects to you, and following an exercise program. It is common for teenagers to stop wanting to take their medications. Open discussions about this issue can prevent flare-ups due to medication non-compliance. Having these types of responsibilities will help prepare them for the transition to adult health care.

Try not to overprotect your child. She might become too dependent if you do everything for her or if you keep her from tasks that she is capable of doing. Don't be manipulated into allowing activities that shouldn't be done, but compromise when you can. Being as consistent as possible will help your child learn what is expected. When your child first becomes ill, you may set aside relationships with other family members. It is important, however, to continue to talk and spend time with others. Plan special time to spend alone with your spouse, or with the entire family.

School Issues

Attendance

Most children with arthritis can attend a regular school and should not be isolated from other children of the same age. Your child may need some special materials and services to help her get along in a regular school.

It is important to educate your child's teachers, the school nurse and the principal about arthritis and its effects on your child. A member of your child's health-care team may be able to help educate these professionals about the disease. 

Physical Education

Regular exercise is an important part of the treatment of your child's arthritis. Sometimes, too much activity may cause increased pain and stiffness to an inflamed or damaged joint. Your child should be allowed to pace herself and to participate in the gym activities that do not hurt involved joints. It is important that your child's gym teacher understand JRA, and especially the restrictions it places on your child's participation in physical education class. For example, a child with a stiff hip or knee will not be able to run a mile or kick a soccer ball as far. A child with a stiff wrist may not be able to serve a volleyball or do a pull-up. Your doctor or nurse should inform your child's gym teacher about any of these issues.

Federal Laws that Can Help

The following federal laws bar discrimination against children with disabilities in public schools, and require private schools to be accessible:

• Section 504 of The Rehabilitation Act of 1973, which bans discrimination against disabled persons in programs that receive federal funds

• Public Law 101-476, which says that every child has a right to a free, appropriate public education, whether or not the child has a disability

• Part H of the IDEA Act, which provides money to states to identify infants and toddlers with developmental disabilities, and to offer early intervention services until they reach age 3

• The Americans with Disabilities Act, which requires private schools, day-care centers and nurseries to be accessible to children with disabilities, and bans discrimination in hiring and employment.

Additional Resources

Financial Assistance

It may sometimes be difficult to get affordable private health insurance that covers all aspects of arthritis. Some public programs that can help you are listed here.

• Supplemental Security Income: SSI is a monthly payment from the federal Social Security Administration to people of any age who are disabled, blind or aged if they have limited income and resources. In most states, children who receive SSI automatically qualify for Medicaid.

• Medicaid: In certain states, families with large medical bills may be classified as medically needy if their income is substantially reduced by medical expenses. Some states also separate the child's assets from those of the parents, enabling a child to qualify for Medicaid.

• Social Security Disability Insurance (SSDI): A disabled child under age 22 can receive SSDI benefits based on a parents' work history and Social Security record if the parent is retired, disabled or deceased. A child who has received SSDI benefits for 24 months becomes eligible for Medicare.

• State programs: Under the federal Title V program, states receive funds to provide rehabilitation and other services for disabled children under age 16 who qualify. States may have other funds to cover care and services for families and children.

• State high-risk insurance pools: Some states have programs to provide health insurance to people who cannot get health insurance anywhere else. Coverage may be expensive, and may not cover pre-existing conditions like arthritis.