Looking after children with Arthritis

by Dr Vinaya kunjir

Arthritis in children is a difficult issue for the suffering children, parents and the treating physician. When a child grows, the parents have a lot of dreams for their child, for their child's comfortable life and career prospects. But when the child develops pain and arthritis the whole world changes for them. There are many questions in parents' mind: How can arthritis occur in a child because it is disease of adults? How long will my child need to take medicines? Can my child go to school again? Will my child have deformities? And so on….. During this time of confusion, the parents need good counseling. Family education helps in carrying out proper treatment and follow up of the child. Some of the things that parents must do while looking after a child with arthritis.

The children cannot express their pain or feelings like adults. They cry for every symptom of illness. The parents need to spend adequate time with their child. Once the parent and kid become good friends, the kids do not hesitate to communicate their feelings. Be your child's best friend and guide.

Notice your child's daily activities. If you notice that your child is avoiding certain activities or certain postures, take him/her to the doctor. Alertness by parents can spot early disease which can help the disease from progressing.

• Do not make the child feel conscious of the disease. Do not constantly ask the child about his illness or pain. Too much care and sympathy is as bad as caring less.
• Allow the child to carry out its normal daily activities but make sure he does not load his affected joints. Make the child sit in western style of toilet so that he does not put strain on the knees.
• Children with arthritis become tired of taking medicines day after day. They always ask why they have to do mindless exercises everyday. Stopping medicines or exercise can cause the pain to relapse again. It is the responsibility of the parents to make sure that the child takes medicines regularly.
• Parents should make efforts to know about the disease. Your doctor is your best guide in these matters. Although information is available on the television and internet, all that may not be applicable to your child.
• Don't be afraid to ask questions about your disease to your doctor. Asking questions will help you in understanding the disease of your child, how it affects, the areas of the body evolved, what maybe helpful in the situation and what should be avoided.
• Parents must keep well maintained file of the prescriptions, reports of the laboratory investigations. The past history is often asked by the doctor in order to make a diagnosis or make changes in the treatment. Hence it is necessary to maintain a record of the previous medication and investigations. The parents can write down their questions before going for the appointment with the doctor.
• Stress of chronic illness affects every member of the family including the siblings. It can have both negative and positive effects on the siblings. The parents should not neglect them while caring for the affected child. The parents should explain to the siblings why the affected child would need more attention and time. They should encourage the brother or sister to take part in the management of the illness like reminding about the medicines or helping the child in exercises or in school.
• Arthritis generally does not affect the ability of the child to learn and think. Looking after the child in school is done by two pillars --> parents and teachers.

  Talking with the school principal and teachers is necessary. Talk to the teachers about the child's illness before the start of the next academic year. Do not make the child carry heavy books.

• If the kid has painful, swollen joints then outdoor games or sports should be avoided. Make the child play indoor games like chess. Also he should be encouraged to take part in music, literature or fine arts.
• Arthritis not only weakens the affected joint but also weakens the muscle and ligaments around the joints. This causes decreased movement of the joint and produces instability during activity. Hence exercise and physiotherapy is an important part in the treatment of arthritis.

It is important that the physiotherapist assesses the child first. Depending on the age of the child, he will prescribe the type of exercises. If the joint is swollen, he might give a splint to rest the joint. If the muscles supporting the joint are weak, he may advise muscle strengthening or some stretching exercises. Water exercises are also a good and acceptable form of therapy for children with arthritis.

Immunization is an important issue in children with arthritis. Parents and families are encouraged to follow the regular immunization schedule for the child. Vaccines are with-held in children whose activities are very severe or who are on high dose of steroids. The treating physician / rheumatologist is the best person to guide in this matter.

Thus, looking after a child with arthritis requires team-work. The team consists of the parents, siblings, teachers, principal, the rheumatologist, physician and the physiotherapist.

Efforts should be made for not only controlling the disease and managing the current problems, but also at planning for the future .

Parents education, family and sibling support, social support, stress management education for the parents and children will help them to cope better with the disease and its disability.