There Are Many Things Family Can Do To Help A Child With Arthritis
Question: Several months ago, our twelve-year-old daughter developed pain and swelling of many joints in her arms and legs. At the beginning we thought she had sprained herself during a swimming competition. When the symptoms persisted, we saw our family doctor and she was admitted to the hospital. The paediatrician told us she has juvenile rheumatoid arthritis, and referred her to a rheumatologist. After many tests, her medical condition was confirmed. She is starting to get better with medications. We want to know whether there are things we can and should do in addition to giving her medicine.
Juvenile rheumatoid arthritis (JRA) is an arthritic condition that affects children under 16 years of age. It is separated from the adult form of rheumatoid arthritis because the natural progression of these two diseases is different. Before answering your question, I would like to make a brief description of JRA for the benefit of other parents and readers.
JRA is one of the most common chronic childhood illness. It afflicts one out of 1,000 children in North America. The defining problem is arthritis (or inflammation) in one of more joints of the body. The symptoms of arthritis include swelling, stiffness, pain, redness, and decrease in movement of the joint that is affected.
The cause of arthritis is still unknown. Research so far indicates that the body’s immune system is somehow attacking the affected joints. There is evidence that at least some of these patients may be genetically predisposed to arthritis.
There are three main forms of JRA: oligoarthritis, polyarthritis, and systemic-onset JRA.
About 60% of children with JRA presents with oligoarthritis. The word oligo- means few. One to 4 joints are affected in these children, most commonly the elbows, wrists, knees, and ankles. There are many more girls affected by oligoarthritis than boys. Sometimes they may not even complain much of joint pain at the beginning. These children may only have stiffness in the morning, and may walk with a slight limp.
The polyarthritis form of JRA affects 30% of patients. By definition, more than four joints are involved, although fewer joints may be affected at the very beginning. Again more girls are affected than boys. In addition to the large joints, smaller joints in the hands and feet can also be affected. Very often, the same joints are involved on both sides of the body, although they can be affected to different degrees. Sometimes the small joints in the cervical spine (the part of the spine in the neck) can be affected. This can lead to partial dislocation of the spine and compression of the spinal cord. The temporomandibular joint in the jaw (also called TMJ) can also be affected, making it painful to eat.
One of the serious complications of JRA is chronic uveitis. This is an inflammatory condition of the tissues around the pupils in the eyes. Unfortunately this inflammation does not cause any symptom initially, and can easily escape notice until it is too late. If untreated, it can seriously impair the child’s vision in the affected eye. About 20% of children with oligoarthritis and 5% with polyarthritis can develop chronic uveitis. Regular examination by an ophthalmologist (eye specialist) is essential in these children.
Only about 10% of patients present with systemic-onset JRA. Their symptoms include high spiking fever (usually over 39oC) and a red rash. These children are usually sick-looking and lethargic when they are febrile, but can appear quite normal when the fever comes down. The red rash is most obvious during the febrile period, and affects mostly the trunk and upper arms. Very often, there is also enlargement of liver, spleen, and lymph glands. Sometimes the arthritic symptoms are not very prominent, and may appear weeks after the onset of fever. Interestingly, both boys and girls are affected equally in systemic-onset JRA.
There are many other medical conditions with features similar to JRA. Therefore, it is most important to do thorough testing, especially because of the chronic nature of this illness. Unfortunately, there is no one single test that can confirm the diagnosis. Contrary to adults with rheumatoid arthritis, most children with JRA do not have positive rheumatoid factor. Doctors have to rely on a combination of tests as well as clinical observation to make a definitive diagnosis.
The arthritis symptoms typically come and go in JRA. During remission, there may be no sign or symptom of arthritis. In some children, the arthritis condition goes on into their adulthood. However, with proper management, most children can enjoy fairly normal and healthy life in spite of this medical condition.
Although medicine is very important in the management of JRA, the child, the parents, and other professional all have important roles. The ultimate goal is to ensure the child leads a healthy and active life. Because of the chronic nature and the painful joints, it is very easy for the child to become emotionally affected. Many families will need psychological assistance along the way.
One of the first and foremost thing for your daughter and family to do is to accept the medical condition, and that it will likely affect her for years. This, however, does not mean that she is going to be crippled, or not able to enjoy many activities other young people like her would enjoy. On the contrary, children (and adults also) with arthritis need to stay active: physical activity is one of the most important component of treatment. If one doesn’t move the affected joint because of pain, the joint will become more stiff, and over time, the muscles and ligaments around the joint will shorten, causing permanent stiffness called contracture.
During the early part of treatment, it is important to move the affected joints as much as pain and stiffness would allow. As the amount of inflammation decreases from medicine, the range of movement can be increased gradually. This part of treatment is best supervised by a physiotherapist. Sometimes it is important to use a splint to keep the joint in certain position during sleep (to prevent contracture) or awake. Children can become easily discouraged or frustrated with these splints, parents have to be sympathetic, but supportive, to ensure that they are used as recommended.
It is good to hear that your daughter is active in sports like swimming. This is probably one of the best sports for those with arthritis, the buoyancy of water allows physical activity without the stress of gravity. Other excellent activities include walking and bicycling. The types and amount of activity depend on the condition of the joints, and this clearly can change with time. You should consult with your doctor and physiotherapist regularly for additional advice.
Children with arthritis likely need more rest during or following physical activities. It is important that her teachers in school understand that, and give assistance appropriately. If the joints in her wrists and hands are involved, writing too much can become painful. Sometimes photocopying notes and using a computer can help her with her work. It is important for her to participate in gym in school, although the type of activity can be tailored to her ability and her clinical condition.
It is also important to remember that a good sleep at night can help to invigorate the body and mind. Sometimes it is necessary to find the proper mattress and pillow which can improve the quality of sleep. If there is significant pain in affected joints during sleep, the physiotherapist may be able to advise additional items that can be used for support in bed, including splints.
It is also important to look around the house to see whether changes can be made to make everyday living easier for her. She may need something to help her get into and out of the bathtub. If her bedroom is on the second floor, it may be worthwhile to find an alternative one on the main floor, at least for the short term. An occupational therapist can visit your home to give you suggestions, and make her life easier.
Being sympathetic to your daughter and making necessary adjustment at home and in school is important. However, it is equally important to make sure that she does not get pampered because of her condition. She should be expected to do as many things physically for herself, and for the family, as she can manage. She may need longer time to do it, and may need rests intermittently. However, it does not mean she should get breakfast in bed because her body is stiff when she wakes up in the morning!
Proper nutrition is also very important in anyone with rheumatoid arthritis. Children with systemic-onset JRA may not feel like eating. Being overweight and having arthritis, especially of the weight-bearing joints (the knees and ankles), will make arthritis even more difficult to bear. The heavier the person is, the more pressure is exerted on these joints, and it is even harder to move around and exercise, therefore, increases the chance of gaining more weight. It is most important to consult with a dietician for additional advice.
I hope the above information is useful for you as a start. You may be interested to read additional information from The Arthritis Society website www.arthritis.ca. This organization also has a toll-free number 1-800-321-1433 that you can call anywhere in Canada.