As an adult man who had to deal with severe bouts of juvenile rheumatoid arthritis in my lower joints all the way up until my mid-teens, I know from firsthand experience how painful – and disheartening – the debilitating disease can be.
However, when I had the relentless bouts of pain which were mostly concentrated in my feet and legs throughout the 1970s, doctors were totally unaware that arthritis could occur in children. As a matter of fact, I saw so many specialists during my youth, that it became an almost regular routine in futility that left everyone – my now deceased parents, my grandmother and myself totally exhausted, both mentally and physically.
These painful episodes which would either keep me up or wake me, for several hours in the middle of the night – and were it not for my now deceased grandmother, Pearl Scott, who found a simple remedy of putting my feet in nearly scalding water, I can’t begin to fathom how much pain I would have actually been in.
At any rate, my reason for writing this column is to share some insight into the world of juvenile rheumatoid arthritis – for both – parents and their children.
Living with juvenile rheumatoid arthritis, which causes inflamed, swollen joints, often means making lifestyle changes and adjustments. This can be frustrating and demanding for you, your child and your family. However, most children with JRA do not have long-term disease and disability and go on to lead healthy adult lives. To help both you and your child cope with the challenges of chronic illness, work as a team with your child’s doctors and other health professionals.
Home, school, and community activities
Regular exercise, taking medications, and using assistive devices when needed will help your child function as normally as possible at home and school.
Children with juvenile rheumatoid arthritis (JRA) must do regular exercises to maintain joint range and muscle strength and prevent contractures. If you have an infant or child younger than 4 years of age who has arthritis, an adult will need to move the child’s joints through the range-of-motion exercises. Older children can do the exercises themselves but may still need adult supervision. Participation in activities such as swimming or biking with other children helps improve a child’s ability to function, builds self-confidence, and may decrease pain and disability.
Balancing rest and activity: Children with JRA may need extra naps or quiet time during the day to rest their joints and regain their strength. However, long periods without activity can cause your child’s joints to be less flexible and may eventually lead to weakness in unused muscles. It is also important not to overdo activity, particularly if it causes pain or stiffness the following day.
Sticking to a medication schedule can be difficult for children with JRA. An older child may find it easier to remember to take medicine by using a pillbox or chart for a day’s or week’s worth of medicine. Ask your doctor whether the dose of medication can be adjusted so your child can take it at times that are most convenient and will not make him or her feel “different.” To avoid stomach upset, you can also give non-steroidal anti-inflammatory drugs (NSAIDs) with meals or a small snack.
Items that can help your child hold onto, open, close, move, or do things more easily include: Doorknob extenders, to avoid twisting the wrist to open doors. Extended or enlarged handles on keys, pencils, silverware, combs, or toothbrushes that make it easier to hold and use these objects. Lightweight clothing and toys; Use velcro fasteners or simple, large fasteners on clothing, instead of small buttons or snaps; a large pull-tab or a loop of cord on a zipper, to make zipping clothing easier; elevated toilet seats, to avoid bending; canes or crutches, to assist walking.
Addressing school issues
Your child’s teachers, school nurse, cafeteria staff, and physical education teachers can become helpful partners as your child copes with JRA at school. Work with them to develop creative ways of dealing with your child’s limitations and making the best of his or her abilities. If your child has trouble walking distances, see whether your child’s classes can be scheduled to minimize walking and stair climbing. If your child gets stiff sitting still during class, encourage him or her to wiggle around and stretch during the class. If your child has trouble writing neatly, he or she might try using a larger pencil or pen. Ask your child’s physical or occupational therapist for other ideas. Be sure to learn about your child’s rights under the Individuals with Disabilities Education Act (IDEA) and other federal and state laws regarding the education of children with disabilities.
Inflammatory eye disease can develop as a complication in children with JRA. Make sure your child has regular eye examinations with an ophthalmologist. The eye disease associated with JRA often has no symptoms, although blurred vision may be an early symptom. Children with disease in up to 4 joints (pauciarticular JRA) need the most frequent examinations.
Overall, juvenile rheumatoid arthritis (JRA) has a good long-term outlook. The outlook is even better when you and your child actively manage your child’s health. With greater understanding of the disease, you and your child will have less fear, make better decisions, and have better results.
Parents also need to take good physical care so that you can help your child through the more difficult periods of illness. Consider becoming involved with a support group of families who live with juvenile rheumatoid arthritis. Your local chapter of the Arthritis Foundation can provide classes and support group information.