Arthritis is a complex family of musculoskeletal disorders consisting of more than 100 different diseases or conditions that destroy joints, bones, muscles, cartilage and other connective tissues, hampering or halting physical movement. Juvenile arthritis (JA) is an umbrella term used to describe the many autoimmune and inflammatory conditions that can develop in children ages 16 and younger.
Arthritis typically affects joints — the word “arthritis” literally means joint inflammation: arth (joint) and itis (inflammation) — but JA can involve the eyes, skin and gastrointestinal tract as well.
In addition, there are several different types of juvenile arthritis. As JA’s prevalence rises, researchers and doctors alike are working to develop a more sophisticated understanding of the differences between the different forms.
The most common type of JA is juvenile idiopathic arthritis (JIA). To receive a diagnosis, a child should be younger than 16 and have initial swelling in one or more joints for at least six weeks.
No known cause has been pinpointed for most forms of juvenile arthritis, nor is there evidence to suggest that toxins, foods or allergies cause children to develop the disease. Some research points toward a genetic predisposition, which means the combination of genes a child receives from family members may cause the onset of arthritis when triggered by other factors.
The most common symptom of all types of juvenile arthritis is persistent joint swelling, pain, and stiffness that is typically worse in the morning or after a nap. The pain may limit movement of the affected joint, although many children, especially younger ones, will not complain of pain. JA commonly affects the knees and the joints in the hands and feet. One of the earliest signs of JA may be limping in the morning because of an affected knee. Besides joint symptoms, children with systemic JA have a high fever and a skin rash. The rash and fever may appear and disappear very quickly. Systemic arthritis also may cause the lymph nodes located in the neck and other parts of the body to swell. In some cases (fewer than half), internal organs including the heart and (very rarely) the lungs, may be involved.
Eye inflammation is a potentially severe complication that commonly occurs in children with oligoarthritis but can also be seen in other types of JA. All children with JA need to have regular eye exams, including a special exam called a slit lamp exam. Eye diseases such as iritis or uveitis can be present at the beginning of arthritis but often develop some time after a child first develops JA. Very commonly, JA-associated eye inflammation does not cause any symptoms and is found only by performing eye exams.
Typically, there are periods when the symptoms of JA are better or disappear (remissions) and times when symptoms “flare,” or get worse. JA is different in each child; some may have just one or two flares and never have symptoms again, while others experience many flares or even have symptoms that never go away.
Some children with JA have growth problems. Depending on the severity of the disease and the joints involved, bone growth at the affected joints may be too fast or too slow, causing one leg or arm to be longer than the other. Overall growth also may be slowed. Doctors are exploring the use of growth hormone to treat this problem. JA may also cause joints to grow unevenly.
The most important step in properly treating your child’s JA is getting an accurate diagnosis. The diagnostic process can be long and detailed, but be patient. Your child’s pediatrician will likely recommend that you visit a pediatric rheumatologist who will then take a complete health history to determine the length of time and type of symptoms present.
There is no single blood test that confirms juvenile arthritis. In fact, blood testing will reveal relatively little in terms of your child’s diagnosis. In children, the key to diagnosis is a careful physical exam, along with taking a medical history.
Along with the physical exam itself, your child’s doctors will take a number of other diagnostic steps – such as laboratory work and x-rays and other imaging tests - in part to rule out other potential causes of symptoms. Blood work, for example, can rule out the possibility of an underlying infection.
Unfortunately, there is no cure for juvenile arthritis. The goal of treatment for JA is to relieve inflammation, control pain and improve your child’s quality of life. Most treatment plans involve a combination of medication, physical activity, eye care and healthy eating.
Every treatment plan is unique and requires that your child's health care team, which might include a pediatric rheumatologist, dentist, ophthalmologist, nurse practitioner and physical therapist, among others.
Medications used to treat JA can be divided into two groups: those that help relieve pain and inflammation (nonsteroidal anti-inflammatory drugs, or NSAIDs, corticosteroids and analgesics) and those that can alter the course of the disease, put it into remission and prevent joint damage, a category known as disease-modifying anti-rheumatic drugs (DMARDs) and a newer subset known as biologic response modifiers (biologics).
Each child responds to his or her treatment plan differently, so there’s no set course of attack for JA. Your child's doctor might try several different medications and/or dosages until your child responds positively to treatment. Some medications affect the immune system or have other side effects, making careful and frequent monitoring very important.
Having arthritis will affect your entire family, but you can maintain a sense of calm and normalcy. Stick to as many of your child's daily routines and comforting habits as possible. Having arthritis should be part of your child’s life — not the central focus of his life.
Coping with a chronic illness diagnosis is difficult for anyone, but especially for children who are not emotionally or physically equipped to handle the situation. Expect and prepare for your child to sometimes feel sad or angry that he or she has arthritis. It’s important to address, rather than ignore these emotions. Help your child maintain the attitude that “arthritis is part of who I am, not the only thing I am.”
Arthritis is truly a family diagnosis. Parents experience many emotions – from sadness to guilt to anger that their child has arthritis. It’s tempting to keep a low profile and avoid participating in too many activities when your child is first diagnosed, but everyone will benefit by keeping relationships and schedules as consistent as possible. Parents should be sure to spend time with their other children and make time for one another – and themselves.
Siblings of children with arthritis will feel a full spectrum of emotion from guilt that they’re healthy, to resentment, anger, loneliness and a need for attention. One key to minimizing sibling tensions is to keep everyone equally involved in and informed about your child’s diagnosis and treatment. If your child who doesn’t have arthritis exhibits signs of clinginess, anxiety or dangerous behaviors, seek help from a counselor who can help ease this transition for your family.