One-fifth of American states don’t have pediatric rheumatologists to care for their share of the estimated 300,000 children with some form of juvenile arthritis. Arthritis is primarily thought of as an old person’s disease, but the truth is, two-thirds of arthritic Americans are under the age of 65.
Symptoms of juvenile arthritis (JA), such as joint pain or swelling, generally surface in children six months old to 16 years old. No one knows what causes arthritis in adolescents. KidsHealth.org describes JA as an auto-immune disease in which white blood cells cease to identify the differences between threats and the body’s own healthy cells. The immune system then randomly releases chemicals that also damage healthy tissues, causing pain and inflammation.
Though there still isn’t a scientifically proven cause, Dr. James N. Jarvis, pediatric rheumatologist and pediatrics professor at OU Health Sciences Center, said that the science community now knows arthritis is much more complicated than white blood cells.
“There are probably complex interactions between multiple parts of the immune system, as well as brain, liver, and blood vessels that contribute to the disease.”
The American College of Rheumatology also suggests that certain children have a genetic disposition to JA, but don’t develop the disease until they are exposed to an infectious trigger like the flu.
The most common form of juvenile arthritis is called juvenile rheumatoid arthritis (JRA), though it is also referred to as juvenile idiopathic arthritis (JIA) and juvenile chronic arthritis (JCA). It is characterized by pain, swelling, and stiffness in any number of the child’s joints.
JRA is further divided into three main categories: pauciarticular, polyarticular, and systematic onset. Pauciarticular JRA affects four or fewer joints and is usually concentrated around the smaller joints in the wrist and ankles. Polyarticular JRA generally affects the larger joints but any child with arthritis in five or more joints can be diagnosed.
Systematic onset JRA is a fairly new division of arthritis, only having been diagnosed in patients in the past few years. Systematic onset is very different from the other two types of JRA in that children with systematic onset have a long list of side symptoms that have little to do with the joints themselves. Patients develop sudden high fevers often accompanied by a rash or pale skin that fades with the fever but can quickly reappear.
Though doctors can administer tests used to diagnose adults with arthritis none of them produce conclusive results for children. As a standard procedure, the rheumatoid factor test is one such test that is run on a patient who may have arthritis. The rheumatoid factor test finds an antibody common in people with arthritic diseases. Having the antibody, however, doesn’t mean the patient has the disease. Kids often haven’t had the disease long enough for the antibody’s presence to be prevalent.
The biggest difference, however, between an adult with arthritis and a child with arthritis is the physical and mental development that the child is going through while the disease is progressing. Dr. Jarvis believes this is why it is so important that kids see pediatric rheumatologists rather than a physician used to seeing only adults.
“I realized that those physicians [adult rheumatologists] had very little experience in handling the complex cognitive and developmental issues that pediatricians caring for children with chronic diseases routinely bring to the care of their patients,” he said.
Children with arthritis have a different timeline than adults. An 80-year-old women who is bed-ridden for three months has a miserable time for that period but the course of her life is not changed. A 17-year-old who has track all-state in a month and currently cannot extend his left leg is a different story. His arthritis cannot wait the six to twelve weeks it can take for a medication to take full effect. For him to make it to the event he has been training for his whole high school career, treatment must be constant and aggressive.
It isn’t unusual for a patient to be taking 10 to 15 pills a day to keep up with life until their disease has been successfully controlled. Only then will their doctor slowly reduce the various medications to weed out which ones aren’t actually helping.
The American College of Rheumatology says the first line of treatment is as simple as sodium naproxen — better known as Aleve — at your local drugstore. As the severity of the disease increases, so does the intensity of the medication regimen. Disease-modifying drugs (DMARDs) suppress the immune system. This takes care of the painful flares but also lowers the body’s resistance to infection.
The newest DMARDs are “anti-TNF agents” such as etanercept (Enbrel). According to a March 17, 2000 press release from the National Institutes of Health (NIH), these drugs are designed to interfere with the biological process of the disease. Enbrel is a tumor necrosis factor (TNF) antagonist that prevents the TNF from causing inflammation by absorbing the TNF. Meant initially for adults, Enbrel was authorized for use on children within the past ten years.
Still, so much is unknown about the disease and how it affects the development of a child. Parents of kids with arthritis tend to be over-protective, and with good reason. Every step they take to control their child’s disease is a big guess — an expensive big guess. Much of the progress doctors see in patients has to do with the patient’s attitude towards the disease.
Dr. Jarvis says parents need to remember that kids with chronic diseases are going through the same issues with autonomy as healthy kids are.
“We have data, for example, that shows that the function status of children with arthritis is more dependent on how sick the parent thinks the child is rather than how severe the disease is,” he said.
Beyond the support from family and a health professional, Congress is still trying to pass the Arthritis Prevention, Control, and Cure Act. Passage of the act, according to a 2008 edition of the magazine insert “Kids Get Arthritis Too,” will ensure arthritis research as a funding priority for the NIH and help remedy the severe shortage of pediatric rheumatologists.
Hopefully, the recent exposure of this bill and education of the community will raise awareness so the disease can receive the attention it needs. The more people that know it exists and understand its implications, the easier it will be to research and find solutions for children with JA.