My Child Has Juvenile Rheumatoid Arthritis: Now What?

Ann Marie Rakowicz, RN
Division of Rheumatology, Hospital for Special Surgery


Juvenile rheumatoid arthritis.

The diagnosis can be overwhelming and terrifying. After you have processed those three words, questions begin to fly from your mouth:

"How did this happen? Why did this happen? Now what do I do?"

The cause of juvenile rheumatoid arthritis is not really known. Researchers believe that this condition could be triggered by environmental issues such as a virus; an immune system that is overactive, causing it to attack joint tissues; and even having certain genes which can make the immune system more likely to attack joint tissues. It affects approximately 50,000 children in the United States.(1)

Juvenile rheumatoid arthritis (JRA) is an autoimmune disorder. Our immune system manufactures white blood cells, which circulate through our body seeking out foreign substances or "invaders." These white blood cells then attack the invaders and help to prevent us from getting sick. In JRA, "The immune system, which is supposed to protect the body from these harmful invaders, instead releases chemicals that can damage healthy tissue and cause inflammation and pain."(1) 

The child with JRA may complain of joint pain, joint swelling, joint stiffness, difficulty sleeping, and problems walking. Very young children may revert to crawling instead of walking in order to reduce their pain level.

Once your child has been evaluated by a pediatric rheumatologist and their diagnosis has been confirmed, the physician will develop a treatment plan which may include medication and physical therapy.

It is important for your child to continue moving about. Proper range of motion exercises can help to keep the joints from becoming stiff or deformed. Your physician will also request that your child undergo an ophthalmology evaluation as JRA can cause a condition known as uveitis, an inflammation of the eye which can lead to problems with vision later on if not treated. Some simple treatments at home to reduce pain can include the use of warm baths, dipping the hands in warm paraffin wax, and even burying their legs in the warm sand during the summer months. Children also benefit from swimming as it stretches many different muscles and tendons, allowing the child to remain in motion and flexible.

I remember when we first received the diagnosis for my granddaughter, and I remember how terrified both my daughter and I were. With the help of a wonderful pediatric rheumatologist, his staff, and the people at the Arthritis Foundation, we were able to get past the dreaded three words and move forward to helping her. It has been five years since Cheyanne was diagnosed (she is now 8) and there is nothing that can stop her from doing whatever she wants to do!

Resources for Parents

Books/Pamphlets:

There are many books and pamphlets available providing helpful insight into JRA which can be purchased at many bookstores and through the Arthritis foundation. A few include:

Keeping Secrets, a Child with Juvenile Rheumatoid Arthritis (in bookstores)

Itís Not Just Growing Pains by HSS pediatric rheumatologist Thomas J. Lehman, MD (in bookstores)

Raising a Child with Arthritis (available through Arthritis Foundation)

"Kids Get Arthritis Too" Newsletter (available through Arthritis Foundation)

Websites:

KidsHealth: Juvenile Rheumatoid Arthritis (This website is geared toward the child, providing information that is easy for the child to read and comprehend)

Arthritis Foundation: Kids Get Arthritis Too (Arthritis.org has a link to JA Alliance which is geared toward children and provides information regarding educational materials as well as financial information. To find your local chapter, please see the Arthritis Foundation website at arthritis.org. This site contains links to local support groups, information regarding summer camps available to our children, the yearly arthritis walk, advocacy programs and the Juvenile Arthritis Awareness Week, which is in March.)

Reference

1. Juvenile Rheumatoid Arthritis. (2008, June). Retrieved February 24, 2010, from KidsHealth: http://kidshealth.org/parent/medical/arthritis/jra.html


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