Living with a chronic disease presents daily and lifelong challenges for adults, but these challenges are amplified in children. Growing up, succeeding in school, making friends and getting along with family members can be difficult even for healthy kids. For children and families dealing with chronic illnesses such as juvenile arthritis (JA), navigating the journey from childhood to adulthood is complicated by physical limitations.
The chronic pain, stiffness and fatigue that accompany JA can affect school performance, make it difficult to exercise and eat well. They also limit participation in activities with friends. Children may feel stigmatized because they are different. They may feel misunderstood by classmates and even teachers. One of the greatest challenges is taking medications at the right times and the right dose to be effective — something which is hard for children to understand.
Children with JA are often on multiple medications. Taken regularly, medications can reduce inflammation enough to improve function and prevent long-term complications. However, noncompliance with medications is a problem and is known to increase significantly a year after the initial diagnosis.
Establishing routines and helping children understand the connection between taking their medications and feeling better will help improve compliance. Gradually allow children to control their own medication schedule, as early as is developmentally appropriate for a child.
Exercise and nutrition
Staying physically active helps children with JA improve overall function. Exercise improves muscle strength, endurance, balance and, ultimately, confidence. It might seem intuitive that exercise can make joint swelling worse. However, this is not the case and exercise is a safe and important part of therapy.
Nutrition is a challenge for children with JA because they may not feel like eating — either due to the disease itself or because medications make them lose their appetite. A balanced diet that includes protein and other nutrients is necessary for bone and muscle growth. On the other hand, some children with JA may actually be at risk for obesity, because they don’t stay active, or because they are on steroid medications that increase appetite. Resources are available for parents to get advice for encouraging healthy eating.
Children with JA face many challenges in school that can affect academic performance — either directly, because of physical limitations, or indirectly, because they feel socially isolated or misunderstood by classmates or teachers. A first step to creating a more positive school experience can be to arrange a 504 plan, a legal document that lists accommodations the school must make because of a child’s disability.
Educating teachers and classmates about JA can also go a long way toward helping your child feel accepted and receive practical help, such as allowing more time to complete assignments, flexibility with late arrivals, and being permitted to get up and walk around during class.
Moving from elementary to middle school can present entirely new challenges, both physical and emotional. A larger school may require more walking around and changing classes. Also, as children become adolescents they become more aware of their disability and may feel even more “different.” At the same time, their bodies are changing, which can add to social anxiety.
Transitioning to adulthood
Although some forms of JA may not last into adulthood, many do, so it is important for families to anticipate the transition. By the teenage years, children should know the names and doses of all their medications, and by late adolescence should be encouraged to make their own doctor appointments, gradually taking complete ownership of their condition and its medical care. At this time, they will transition from a pediatric rheumatologist to an adult rheumatologist.
Pain and hope
A systematic review of studies of children with JA found that self-esteem and hope depends mainly on their ability to control pain by managing their own medications and care. The review concluded that children growing up with JA must be educated about treatment and lifestyle management. They also need strong family and community support, and should take an active role in making decisions about their own health and medical care.
Children and adolescents may benefit from hearing other youth who are on the same journey, and by sharing their stories about living with JA.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.