Juvenile arthritis is an autoimmune disease that develops in childhood or adolescence. There is currently no cure for this disease.
However, certain medications can help control symptoms and sometimes keep the person in remission for extended periods, even for several years.
Caring for children with juvenile arthritis requires that the children and their parents, as well as numerous healthcare practitioners, all work together as a team. Here are some of the professionals who can play an important role in the care and well-being of the patient:
Pediatric rheumatologists: These are juvenile arthritis specialists. They diagnose the disease, determine the best treatment, and monitor their patients until they reach adulthood. In order to get the most out of the prescribed treatment, it’s important to follow the doctor’s instructions to the letter.
Nurse specialists: The rheumatologist usually works as a team with one or more nurses. These nurses are the main contact person for parents and they are often the ones who set up treatments, tests and appointments with the rheumatologist.
Pharmacists: Pharmacists work with the rheumatologist to oversee the medications prescribed. They may suggest solutions if a child is having problems taking the medication or if there are drug-related adverse effects. It’s important to speak to the pharmacist before taking any natural health product or over-the-counter medication, to make sure there are no possible interactions with the arthritis treatment.
Physiotherapists: Physiotherapists are in charge of creating an exercise program tailored to the child’s needs. These exercises are designed to improve joint function, strengthen the muscles that surround the joints and prevent complications (e.g. contractures).
Occupational therapists: These specialists are usually called upon when the hands are affected, because this could reduce a child’s ability to hold objects (utensils, pencils, etc.). An occupational therapist can suggest specific exercises or devices to help manipulate objects.
Ophthalmologists: These doctors specialize in treating eye diseases. Since children with juvenile arthritis are at risk for ocular complications, they must visit an ophthalmologist regularly in order to screen for vision problems.
Dentists and orthodontists: Dental hygiene can be difficult for children with limited hand or jaw movements (difficulty holding a toothbrush or opening the jaw wide enough). Regular dental checkups ensure that the child’s teeth are healthy. Some children may also need to see an orthodontist if the disease causes a misalignment of the jaw, for example.
Psychologists: Suffering from a chronic illness is never easy, and it’s even more difficult for children and teenagers who may feel isolated or get bullied due to their condition. A psychologist can help children and their families better understand and manage the emotions that can arise when living this disease and its effects.
Social workers: Some families may need help to meet the needs of a child with a chronic illness. Social workers are there to help identify the resources best suited to the family’s specific needs, such as services to accompany the child to medical appointments.
Dietitians: Some families may need the help of a dietitian. For example, in a small number of cases, the digestive system is affected and some foods must be avoided. In those cases, a dietitian can explain to parents which foods to avoid, and how to replace them to ensure that the child gets all the nutrients needed for a balanced diet.
While all of these professionals can play an important role in caring for children with juvenile arthritis, not every family will need help from each of them. Also, the collaboration with this healthcare team doesn’t end on the patient’s 18th birthday, even though pediatric specialists eventually have to pass the torch to colleagues who specialize in treating adults with the condition.
Lastly, the Arthritis Society is a precious resource for anyone suffering from any of the various forms of arthritis. Among other things, the Society organizes activities designed for children with juvenile arthritis (e.g. summer camps). Visit their website for more information: www.arthritis.ca