Surgery
· Surgery is usually not needed for juvenile arthritis. However, if your child’s arthritis is severe and lasts for many years this can affect his or her growth, and your doctor may recommend surgery. For example, if one leg grows faster than the other, surgery can be done to make the short leg longer
Surgery is not commonly required but may ultimately be necessary after many years of severe arthritis. Your doctor may seek the advice of an orthopedic surgeon to help plan future treatments and surgical procedures. Sometimes the tendons and ligaments around joints, such as the hips, may need lengthening. When arthritis affects one knee more than the other, the side with the worse arthritis may grow faster. This may, temporarily, increase the length of the leg of the more involved side, but given time, the growth of the other leg will often catch up. Only very rarely is a surgical procedure required to correct the difference in leg lengths. The orthopedic surgeon may also be asked to make recommendations on splinting and rehabilitation.
If arthritis has severely affected the jaw, there may be poor chin growth. An orthodontist may recommend a splint to be worn in the mouth. Surgical procedures can correct this problem once the disease is in remission. Your doctor may seek the advice of an orthodontist to make recommendations regarding these procedures.
Arthritis of the jaw can make complicated dental work a problem. Be sure to tell your dentist that your child has arthritis so that he or she can give your child's teeth special attention. You should also strongly encourage your child to practice good dental care. As JA frequently affects the neck and jaw, it may make general anesthesia difficult, and it is advisable that an anesthetist see children with JA before any type of operation is planned.
Parenting
Parents are an important part of the overall health care team, and as such, should be as well informed as possible. When you have questions, write them down before the clinic appointment so that they are not forgotten. Feel free to question your doctor about medications and other parts of the treatment plan, and make sure that you understand the reasons behind all the recommendations.
Your Family
Fear of the future can affect how even the strongest family works together. It is very helpful if all family members can become involved in the child's program so that they can provide each other with the support needed to deal with, and overcome, a chronic illness.
Sometimes the parents of a child with a chronic health problem become overly involved with that child to the exclusion of other aspects of their lives. It is important for parents to socialize, maintain their friends and pursue other interests if they are to keep a balanced perspective and provide the optimism and strength their child needs.
The emotional stress of an ongoing illness like arthritis is felt keenly by other children in the family. Brothers and sisters are often confused as to how to feel about the child with arthritis. They want to help, but sometimes - understandably - they are jealous of all the extra attention the child with arthritis seems to receive. Brothers and sisters may have difficulty understanding why there is so little time left for them. Make sure their interests are not overlooked, and encourage them to get involved. It may be appropriate, for example, to have the other children participate in the exercise program with the child with arthritis. Allow them to openly discuss their own efforts and struggles to adjust to their siblings' arthritis. On a positive note, children who grow up in a home with a chronically ill brother or sister often develop rare insight into the problems of others and benefit from this experience.
Independence and Learning to Cope with Life
Parents should set limits and discipline the child with arthritis as normally as possible. There is a tendency for parents to excuse the child with arthritis for inappropriate behaviour. However, this may, at times, encourage the child to use the disability for her own advantage both in and outside the home, which can lead to behaviour problems later on in life. Often, parents need help from a professional in knowing how to best deal with some of these issues. A social worker or psychologist skilled in helping families deal with such problems may be of great benefit during these times.
It is important for parents to think in terms of what their child can do and encourage the child to discover his or her own limits from the start. It is important to let your child dress and undress herself, even if this seems to take too long. Involvement of the joints of the hands may make buttons hard to grasp. Often, restricted hip movement can make shoes and socks difficult to put on and take off. An occupational therapist can design aids that will help children manage despite such difficulties.
Your Child and School
It is crucial that your child's life remain as normal as possible. Attending a regular school should be a prime goal of the treatment program. If the arthritis is active, this will require the encouragement and help of understanding school staff. At the start of the year, set up a meeting with the principal, teachers, nurse and any others in the school who may be in contact with your child. Share with them your child's condition, limitations, strong points and special needs, and tell them about JA and your child's treatment program. There are special pamphlets for teachers of children with JA that are available from various organizations, including The Arthritis Society. If the school staff has further questions, it may be advisable for members of your child's arthritis team to meet with them, as well.
Early morning stiffness can be the greatest problem in getting to school. During the night, fluid accumulates in the joints making them stiff. As your child gets moving in the morning the stiffness decreases. Your child may have to wake up early so that the stiffness improves enough to move comfortably. A warm bath with a stretching exercise program is very helpful. And if at all possible, your child should get dressed without help, because dressing is itself an excellent joint exercise.
Since early morning joint stiffness may vary in duration from day-to-day, teachers should be told that your child might sometimes be late. Most children with arthritis attend school full-time, but if your doctor and therapist decide that half-days at school should be tried this may be better done in the afternoons.
Classmates will be curious about hand splints. If the teacher treats your child's splints in a matter-of-fact way, so will the class. A simple explanation to the class about the use of splints in the treatment of arthritis is best. Splints can be likened to teeth braces, which are used temporarily to make sure that part of the body grows straight. Painful wrists may make carrying books a problem; the school may provide another set of books for home. A backpack may also be helpful.
Children with arthritis often get stiff if they sit for too long a period of time. Teachers can help by having your child move around in the classroom. If the arthritis is very active, the child may be unable to participate in regular gym classes and arrangements can be made for the child to do physiotherapy during gym. If the adolescent's knees are swollen, it is best to avoid sports that require a lot of jumping or jarring movements, e.g. basketball or downhill skiing. However, your child should not be restricted. Unless the arthritis is severe he or she should be encouraged to participate in activities and set his or her own limits. It helps to have the classmates of a child with severe arthritis well informed, too. Getting them involved - assisting with boots and clothing, for example, or heavy doors, taking notes and so on - can promote understanding and cooperation, and make your child's school days much easier. Your child may also be able to suggest ways that classmates can help.
In high school, children are often expected to rotate from class to class. This may pose special problems for children with arthritis. It may be beneficial to have your child excused from class a few minutes early to 'beat the rush' to the next class. If possible, try to have classes scheduled so that there is as little distance as possible between different classrooms.
Adolescence
Adolescence is a particularly challenging time, as one of the main developmental tasks of adolescence is separating from the family and learning to become independent. You should encourage your child to pursue and enjoy active friendships. If there is an overly involved relationship between teen and parents, independence will be harder to attain.
Adolescents, like everyone else, need someone to talk to about their problems. Doctors, nurses, therapists, social workers and teachers can help during these difficult years.
A Word of Encouragement
In the majority of children with mild forms of arthritis, it is usually easy to adapt so that there is almost no impact on lifestyle at school or at home. Children with more severe arthritis have to learn to cope with life's difficulties at an early age. They may have to overcome pain, depression, separation from family and friends during hospitalizations and limitations on their ability to do things and have fun. They must take on the responsibility of an exercise program and take medication on a regular basis. But with guidance and encouragement from the arthritis team and the family, these can be growing experiences. The child who has overcome his or her illness grows up to be a unique and special person.
Additional Tips for Living Well
· The Arthritis Society offers a variety of programs and services that can be helpful.
· You can reach the Society at 1-800-321-1433 from anywhere in Canada .
· You can also reach Arthritis through our Web site at www.arthritis.ca
Along with the physical symptoms of arthritis, many people experience feelings of helplessness and depression. Learning daily living strategies to manage your arthritis gives you a greater feeling of control and a more positive outlook. To get the best results, people affected by arthritis need to form close ties with their doctors and therapists, and become full partners in their treatment. From our perspective, it's all part of 'living well with arthritis.' There are several resources you can use in finding out how best to manage your own arthritis. Here are a few:
· The Arthritis Self-Management Program (ASMP) is a unique self-help program offered by The Arthritis Society to help you better control and manage your arthritis.
· The Open Forum within this Web site is an opportunity to discuss and share information with other visitors - people who, through their own experiences, may be able to offer some useful insights.
Of course, there are many other valuable resources for people with arthritis. If you're unclear about where to look for help, be sure to call The Arthritis Society at 1-800-321-1433
