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How Can The Family Help A Child Live Well With Juvenile Arthritis
Juvenile arthritis affects the entire family, all of whom must cope with the special challenges of this disease. JA can strain a child's participation in social and after-school activities and make schoolwork more difficult. Family members can do several things to help the child physically and emotionally.
- Get the best care possible. Ensure that the child receives appropriate medical care and follows the doctor's instructions. If possible, have a pediatric rheumatologist manage your child's care. If such a specialist is not close by, consider having your child see one yearly or twice a year. A pediatric rheumatologist can devise a treatment plan and consult with your child's doctor, who will help you carry it out and monitor your child's progress.
- Learn as much as you can about your child's disease and its treatment. (The resources listed at the end of this booklet can help.) Many treatment options are available, and because JA is different in each child, what works for one may not work for another. If the medications that the doctor prescribes do not relieve symptoms or if they cause unpleasant side effects, you and your child should discuss other choices with the doctor. A person with JA can be more active when symptoms are controlled.
- Insist that your child take the treatment. Although it can be difficult to give your child a weekly shot or unpleasant-tasting medication, it's important that you do so for his or her sake. If your child truly has a problem with one form of medication, speak with the doctor. He or she may be able to recommend a different medication or at least suggest ways to make taking the medication a little easier.
- Consider joining a support group. Try to find other parents and kids who face similar experiences. It can help you and your child to know you're not alone. The Juvenile Arthritis Alliance (JAA), a membership organization of the Arthritis Foundation, has support groups for people with JA and their families. The organization also has national meetings at which families can learn the latest about pediatric rheumatic disorders, share ideas, and form friendships.
- Treat the child as normally as possible. Don't cut your child too much slack just because he or she has arthritis. Too much coddling can keep your child from being responsible and independent and can cause resentment in siblings.
- Encourage exercise and physical therapy for the child. For many young people, exercise and physical therapy play important roles in managing JA. Parents can arrange for children to participate in activities that the doctor recommends. During symptom-free periods, many doctors suggest playing team sports or doing other activities. The goal is to help keep the joints strong and flexible, to provide play time with other children, and to encourage appropriate social development.
- Work closely with your child's school. Help your child's school to develop a suitable lesson plan, and educate your child's teacher and classmates about JA. For information about Kids on the Block, Inc., a program that uses puppets to illustrate how arthritis and other conditions can affect school, sports, friends, and family, see "Where Can People Find More Information About Juvenile Arthritis?" on page 27. To learn more about Federal laws that ensure access to education for special needs students, refer to Public Law (P.L.) 93-112, P.L. 94-482, and P.L. 99-457. Some children with JA may be absent from school for prolonged periods and need to have the teacher send assignments home. Some minor changes such as having an extra set of books or leaving class a few minutes early to get to the next class on time can be a great help. With proper attention, most children progress normally through school.
- Talk with your child. Explain that getting JA is nobody's fault. Some children believe that JA is a punishment for something they did. Let your child know you are always available to listen, and help him or her in any way you can.
- Work with therapists or social workers. They can help you and your child adapt more easily to the lifestyle changes JA may bring.
Do These Children Have to Limit Activities?
Although pain sometimes limits physical activity, exercise is important for reducing the symptoms of juvenile arthritis
and maintaining function and range of motion of the joints. Most
children with JA can take part fully in physical activities and
selected sports when their symptoms are under control. During a disease
flare, however, the doctor may advise limiting certain activities,
depending on the joints involved. Once the flare is over, the child can
start regular activities again.
Swimming is particularly useful because it uses many joints and muscles without putting weight on the joints. A doctor or physical therapist can recommend exercises and activities.
What Are Researchers Trying to Learn About Juvenile Arthritis?
Scientists are investigating the possible causes of juvenile arthritis.
Researchers suspect that both genetic and environmental factors are
involved in development of the disease, and they are studying these
factors in detail. To help explore the role of genetics, the National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has a research registry for families in which two or more siblings have JA.
The JRA Affected Sib-Pairs Registry is located at the Cincinnati
Children's Hospital Medical Center. Established in 1994, the registry
continually lists new cases and is systematically updated. The focus of
the registry is on genetic susceptibility in families whose siblings
have JA. Current NIAMS-funded research is looking at genes that can
predispose people to diseases and perhaps help predict their outcome.
Eventually, gene therapy, or therapy based on the functioning of genes,
may be used to treat pediatric rheumatic disorders by monitoring
children's response to treatment or by predicting who is most likely to
respond to a particular treatment regimen.
Researchers keep trying to improve existing treatments for children and
find new medicines that will work better with fewer side effects. That
effort received a major boost with the passage of the Pediatric
Research Equity Act of 2003, which requires drugs that might be used in
children to be tested in children. As a result of the act, increasing
numbers of medications are being tested for safety and effectiveness in
children. Consequently, doctors will have more information on
appropriate medications and doses to prescribe for their pediatric
patients. (For information on specific drugs studies in children, visit
www.clinicaltrials.gov.)
Other areas of research supported by the National Institutes of Health are widely varied and include studies of the following:
- the causes and consequences of sleep disruption in children with JA
- the causes of and potential treatments for anemia that often occurs in children with chronic inflammatory diseases such as JA
- the effectiveness of daily calcium supplementation for increasing bone mineral density in children with JA. A randomized, controlled trial of calcium supplementation was conducted among children with JA. The trial found that supplementation resulted in a small, but statistically significant, increase in total body bone mineral density, compared with a placebo in children with JA.
- the safety and usefulness of the combination of intravenous methylprednisolone (a corticosteroid medication) and intravenous cyclophosphamide (a drug that suppresses the immune system) compared to treatment with intravenous methylprednisolone alone for children with severe systemic JA
- the impact of chronic and recurrent pain on children
- ways to limit the impact of pain on children's functioning
- the role of an inflammatory chemical called interleukin-15 (IL-15) in the growth of new blood vessels in the tissue lining of the joint tissue. This increase in blood vessels contributes to the overgrowth of the tissue (called pannus) and damage in JA
- a randomized, controlled trial of the effectiveness of a combination of methotrexate, corticosteroids, and etanercept compared to the standard therapy of methotrexate in keeping disease inactive in children with new onset polyarthritis.
Where Can People Find More Information About Arthritis and Rheumatic Diseases?
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll Free: 877-22-NIAMS (226-4267)
TTY: 3015652966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov
Website: www.niams.nih.gov
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