When most people hear the word “arthritis,” they think of older adults, but about 300,000 children in the United States suffer from arthritis. Juvenile arthritis (JA) is believed to affect approximately one out of every 1,000 children.
This disease can develop in children of any age, although it’s rare for children less than six months to develop juvenile arthritis. It’s still not completely understood why certain children develop juvenile arthritis, but it’s believed that some children are born with a genetic predisposition to the disease. Some sort of trigger, such as exposure to an infection, is thought to be required to “activate” the genetic predisposition and cause a child to begin experiencing symptoms.
Juvenile arthritis is an umbrella term that includes several different conditions.
Many autoimmune or inflammatory conditions, as well as pediatric rheumatic diseases, that can potentially develop in children under age 16 are included under the umbrella of juvenile arthritis. Many of these different types of juvenile arthritis have similar symptoms. The most notable of these symptoms are pain, swelling, warmth, and redness in the joints, although the severity of joint symptoms can vary depending on the type of juvenile arthritis.
Additionally, different parts of the body can be involved. For instance, some types of juvenile arthritis can affect the eyes, muscles, skin, or digestive tract. There isn’t a single blood test that can be used to determine whether or not a child has juvenile arthritis, so diagnosis is usually a long process. Reaching a diagnosis typically involves a detailed medical history, a careful physical exam, and X-rays. Once the physician is able to narrow down a likely type of juvenile arthritis, he or she will be able to order specific tests to confirm it.
While there are some common symptoms among children with juvenile arthritis, the specific symptoms of each individual child will vary.
Typically, certain common symptoms lead parents to start looking for answers. These symptoms might include limping or joint stiffness after sleeping, excessive clumsiness, rashes, fevers, or lymph node swelling.
The types of juvenile arthritis are:
- Juvenile idiopathic arthritis (JIA). This is the most common type of juvenile arthritis. There are also six subtypes of JIA: oligoarthritis, polyarthritis, systemic, enthesitis-related, juvenile psoriatic arthritis, and undifferentiated.
- Juvenile dermatomyositis. Muscle weakness and a rash on the eyelids and knuckles characterize this inflammatory disease.
- Juvenile lupus. This is an autoimmune disease, meaning that the body’s immune system mistakenly attacks the body. There are different forms, just as in lupus that affects adults, and the most common is systemic lupus erythematosus (SLE). The joints, skin, kidneys, and blood can all be affected.
- Juvenile scleroderma. This form of juvenile arthritis causes the skin to tighten and harden, which is how it got its name. Scleroderma translates to “hard skin.”
- Kawasaki disease. Blood vessel inflammation occurs in this disease. The inflammation can even lead to heart complications.
- Mixed connective tissue disease. This disease involves high levels of an antinuclear antibody called anti-RNP. The symptoms can include features of arthritis, scleroderma, and dermatomyositis.
- As in adults, this syndrome (which is arthritis-related) causes stiffness, aching, fatigue, and disrupted sleep, among other symptoms. It’s more common among girls than boys.
There is no cure for juvenile arthritis, but progress is being made toward more effective treatments.
The current treatment recommendations for juvenile arthritis include a wide variety of medications. Non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and aspirin, are included as a potential part of treatment. Also included are many different oral and intravenous medications. Because of these many different potential treatment routes, communication and teamwork is key. This is why one team of researchers has developed a way to encourage shared decision-making.
Shared-decision making involves the young patients, their parents, and their rheumatologists in the decisions pertaining to treatment. Working closely on these types of decisions requires everyone to know some key information about the different medications. Therefore these researchers first identified six categories of questions that are particularly important, which include:
- How soon will this medication take effect?
- How often is this medication given?
- What are the potential side effects?
- How much will it cost?
- How long will the patient have to stay on this medication?
- Are there other considerations or additional concerns?
Once these categories had been identified through interviews and observations, the researchers developed a series of cards (which have since been converted to an electronic format). These cards are to be used during physician appointments. The physician will present the cards to the family, and the family will choose which card they’d like to discuss first. Not only will the use of these cards encourage discussion, but the order in which the family chooses to discuss the cards will help the physician understand that particular family’s priorities.
Researchers are also working to understand how to best utilize the tools and medications available to them when it comes to juvenile arthritis.
For instance, it’s been proven that early, aggressive combination therapy can help juvenile idiopathic arthritis patients achieve clinical inactive disease status (remission) faster and maintain it for longer. For therapy to begin early enough, the child must be diagnosed correctly as soon as possible, which can be tricky. Additionally, aggressive combination therapy involves the use of a combination of different medications. Specific, successful combinations of medications are also being identified through trials.
Even as researchers come closer to understanding how to achieve remission in patients, though, there is still a great deal they don’t understand – such as why certain children with juvenile arthritis experience flares, while others don’t. This is why Dr. James N. Jarvis, clinical professor of pediatrics at the University at Buffalo School of Medicine and Biomedical Sciences, and his team are looking at the genomes associated with remission and flares.
Dr. Jarvis’s eventual goal is to create a “genomic roadmap” to juvenile arthritis treatment, which would allow targeted, personalized treatment for each individual patient. Already, they’ve identified one transcription factor that binds to DNA and acts as a switch that controls gene expression. In other words, since juvenile arthritis is related to genetic markers, this “switch” controls whether or not the gene expresses it and whether the patient experiences a flare or a remission. Dr. Jarvis believes there may be a “group of master switches” that determine how the body responds to treatment. If identified, studying each individual’s genomes could allow physicians to deliberately control those switches.
Another team of researchers has found that total hip replacements, which are a fairly common practice among individuals with juvenile arthritis, are indeed a successful method of treatment, with good longevity and mostly successful outcomes. However, it was also found that the hip replacements last longer when they’re performed on patients older than 25 and that male patients tend to report greater success.
Risk factors associated with juvenile arthritis are also being studied. For example, children with juvenile arthritis may be at a higher risk of developing bacterial infections while hospitalized. This makes sense, since many of the drugs used to treat juvenile arthritis involve suppression of the immune system.
Interestingly, the use of prescription antibiotics seems to increase the risk of a child developing juvenile arthritis in the first place. This does not, however, mean that children should be denied antibiotics. It simply means that antibiotics should be used judiciously. Studies have shown that about 25% of the antibiotics prescribed to children are unnecessary. Therefore, rather than simply demanding that a physician prescribe something to make his or her child get better, parents should discuss whether or not antibiotics would be useful in that particular case.
Dealing with juvenile arthritis can be difficult for the entire family, but there are many different resources available.
Websites like KidsHealth.org provide clear, simple explanations of medical conditions for children, which can help when explaining a diagnosis to a child. Parents can find support online through Facebook groups or at sites like MDJunction.com. These sites are also a great place to go when a parent has questions, since there are lots of other parents who have helped their children deal with their disease for years. The website KidsGetArthritisToo.org is a fantastic source of information and resources, and there’s also a place to meet other families who have a child with juvenile arthritis.
Another great site is Arthritis.org. The website has information about all types of arthritis, including juvenile. Perhaps most helpful, it allows people to find local events, groups, charities, or resources to help with their disease. Simply search for local offices and choose your state. On the left side of the computer screen, click “Juvenile Arthritis” in the navigation menu. You’ll see links to different types of resources near you, such as “Summer Camps,” “Teen Camp,” “Family Days and Family Camps,” or “Fundraising Events.”
You’ll also see a link to a “JA Power Pack.” This pack is free to children with juvenile arthritis, and it’s great for families who’ve just had a diagnosis. A few of the included goodies include a guide to raising a child with arthritis for parents, information about how to handle various situations (like school attendance or sports), and a stuffed bear called Buddy D. Bear who provides hot or cold therapy while a child cuddles it. A teen version of the pack is also available, which includes a thermal wrap instead of a bear.
Do you know a child who’s been diagnosed with juvenile arthritis?
Image by Javcon117* via Flickr