By Lene Andersen, Community Leader for HealthCentral.com's Rheumatoid Arthritis site. She is also the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.
Juvenile Arthritis affects approximately 300,000 children in the US. Find out more about what the disease is, and how the symptoms can be managed and treated.
What is Juvenile Arthritis?
Juvenile arthritis is an umbrella description for several different types of autoimmune and inflammatory arthritis that can affect children under the age of 16. In an autoimmune disease, the immune system malfunctions and attacks different systems in the body, such as joints, organs and connective tissue. This is often expressed as inflammation.
Juvenile arthritis is one of the most common childhood diseases and affects approximately 300,000 children in the US. It usually develops between the ages of two and four or during the tween or teen years and it is more frequent in girls than in boys. The cause of most forms of juvenile arthritis is not known, but genetic factors play a role. There is no evidence that foods, toxins, vitamin deficiencies or allergies are involved in its development.
The most common form of juvenile arthritis is Juvenile Idiopathic Arthritis (JIA), previously known as Juvenile Rheumatoid arthritis. Most cases of JIA are very different from adult rheumatoid arthritis (RA). In fact, only 10 percent of cases are similar to adult RA. Idiopathic means "of unknown origin," reflecting our current state of knowledge regarding how this disease develops.
Symptoms of JIA include joint swelling and misalignment, tightening of soft tissue and muscles, bone erosion and systemic symptoms, such as fevers and rash. There are different categories of JIA, depending on how many joints are involved, if onset was systemic and whether the Rheumatoid Factor blood test is positive or negative.
Diagnosis and Treatment
For very young children, losing a developmental milestone – such as walking – can be one of the first signs of juvenile arthritis. Other symptoms may be swelling and pain in the joints and unexplained fevers and rash.
Early diagnosis is essential so treatment can start. If your pediatrician suspects that your child may have juvenile arthritis, they will refer you to a pediatric rheumatologist. Diagnosis is made primarily based on a medical history and a thorough physical exam. Other diagnostic tests will also be included, such as lab work (blood tests), x-rays and other imaging.
A potential serious complication of juvenile arthritis is different types of eye inflammation, such as uveitis or iritis. Left untreated, they can cause blindness. It is important that children with juvenile arthritis have regular checkups with a pediatric ophthalmologist, working with the child's rheumatologist.
There is no cure for juvenile arthritis, but it is possible to treat it. Children with juvenile arthritis respond better to early treatment, which can prevent deformity and disability. The medications used are the same as those used to treat adults with rheumatoid arthritis, also an autoimmune disease. Two groups of drugs are used. Nonsteroidal anti-inflammatory drugs or NSAIDs address the symptoms of pain and inflammation. Secondly, medications to change the disease and bring the child into remission or low disease activity. Most of the second group of medications are immunosuppressants – suppressing the immune system limits the way it attacks systems in the body. Methotrexate is the gold standard of treatment. Methotrexate is a chemotherapy drug, but when used to treat juvenile arthritis or RA, it is given in doses much, much smaller than when it is used to treat cancer. The newer biologic drugs, such as Enbrel, Humira and Simponi, are also used.
Because of these medications, it is possible for a high number of children with juvenile arthritis to achieve remission or inactive disease. In the past, many children with juvenile arthritis ended up using wheelchairs and having growth abnormalities. Now, however, it is possible to minimize the effects of the disease, keep children out of wheelchairs and help them reach their full potential. Treatment of juvenile arthritis also includes physical therapy, occupational therapy, splints and occasionally surgery.
Many families also use complementary or alternative medicine at the same time as conventional medicine. This may help provide better quality of life. However, it is important to proceed with thorough research and caution when choosing complementary therapy, as well as to discuss the issue with the child's rheumatologist.
There is a serious lack of pediatric rheumatologists in the U.S. Eleven states do not have even one board-certified pediatric rheumatologist and seven states have only one. This has serious implications for children living with juvenile arthritis.
Effects of Juvenile Arthritis
Children who have juvenile arthritis face many challenges in their lives. They may not have the emotional resources to deal with having a chronic illness and may be sad or angry. It is important to address these emotions to help the child cope. It is also important for the child to feel as "normal" as possible, being treated the same way as their siblings, with similar responsibilities within the family.
Juvenile arthritis may affect the child's ability to attend school or participate in certain activities. Legally, children have a right to accommodation of illness or disability in education. A 504 plan or Individual Educational Plan (IEP) that outlines accommodations and modifications may be created . Such plans are reviewed annually to make sure they continue to meet the child's needs. It's important to be aware of what's happening at school, not just in terms of the educational elements, but also to safeguard against potential bullying because of juvenile arthritis.
When a child has juvenile arthritis, it affects the whole family. Having a sick child can put a strain on parents as individuals and on their marriage. Finding time to take care of yourself, as well as nourishing the relationship between spouses can make it easier to deal with the stress of chronic illness. Siblings of children with juvenile arthritis also feel the effects, ranging from guilt and anger to feelings of loneliness. Being open and honest about the situation can help, as can finding ways to make every child feel special, for different reasons.
Transitioning into Adulthood.
Children do not "grow out of" juvenile arthritis. Although some children do experience a fading of symptoms, most go in and out of disease activity throughout their lives. Treatment of the disease is usually continuous, involving methotrexate and the Biologics, as well as NSAIDs and other painkillers. Adults who had juvenile arthritis are also at continued risk for uveitis and should receive regular checkups by an ophthalmologist.
Involving children who have juvenile arthritis in their medical care from the beginning will help them transition into adults who are responsible and empowered when dealing with their chronic illness.