It’s never easy to see your child in any kind of pain. And hearing that your kiddo has a chronic disease like JIA is an even harder pill to swallow. Understanding the nuts and bolts of the disease, and what to expect, can make it things a little less scary. We talked to rheumatology experts and dug deep into the research to bring you and your family the very latest info on JIA. Here's what you need to know.
The Cause of JIA Is Unknown
Juvenile Idiopathic Arthritis (JIA) affects roughly 10% of children and teens with arthritis. Typically, it causes joint pain and inflammation in the hands, knees, ankles, elbows, and wrists but it is also known to affect other body parts too, including internal organs. The tricky part of JIA: The reason some kids get this disease is unknown and there is no method to prevent it.
“JIA is described as a complex trait, which means that there is no single gene that confers risk,” says Sampath Prahalad, M.D., director of rheumatology at the Children’s Healthcare of Atlanta. “It is due to a combination of many genetic variants with, as of now, unknown environmental triggers.” Translation: It’s still a mystery.
JIA Even Stumps Scientists
Scientists aren’t sure why kids develop JIA. (FYI: the word “idiopathic”—the ‘I’ in the acronym—means unknown.) They have theories, of course (i.e. children have certain genes that are activated by a virus, bacteria, or other external factor). Other things that have been investigated—and disproven—as possible causes of JIA include certain foods, allergies, or lack of vitamins.
What we do know is that all six types of JIA (see them, below) are considered autoimmune diseases, meaning your kid’s immune system, which is supposed to fight germs and viruses, gets confused and attacks healthy cells and tissues instead. This causes the body to release inflammatory chemicals that wreck the tissue lining around joints. Usually, this tissue produces fluid that cushions joints and helps them move smoothly. However, when someone has JIA, inflamed tissue may make joints feel painful or tender, look red or swollen, and be difficult to move.
Oligoarthritis Is the Most Common Subset of JIA
Oligoarthritis is a common strain of JIA, affecting two-thirds of patients, especially girls. It’s also the mildest strain of JIA, affecting four or fewer joints, typically the large ones like the knees, ankles, and elbows, and is usually marked by joint pain and swelling. Onset of oligoarthritis is usually seen in early childhood, often before 2 or 4 years of age. There are five other strains, including:
- Polyarthritis: Affects five or more joints and can begin at any age.
- Systemic JIA: Affects about 10% of children with arthritis, and often starts with back-to-back fevers.
- Psoriatic JIA: Characterized by chronic joint inflammation and swelling, plus an increased risk for asymptomatic eye inflammation.
- Enthesitis-Related: Often involves inflammation of the attachments of ligaments as well as the spine.
- Undifferentiated: Doesn’t fit into any of the above types.
There Are 8 Symptoms to Look Out For
Did you know that children can show symptoms for JIA as young as 2 years old? To catch JIA at its earliest and have the best shot at treating it successfully, make sure you can identify the following symptoms:
- Joint pain or stiffness that may worsen after waking up in the morning or staying in one position too long
- Red, swollen, tender, or warm joints
- Blurry vision or dry eyes
- Appetite loss
- High fever
It’s important to note that JIA symptoms come and go. There may be periods of lots of inflammation and worsening symptoms that are called flares. These flares can last for days or months.
JIA Makes Sitting for a Long Time Difficult
Another clue that may signal JIA: If your child is having trouble sitting in her seat for long road trips or he's coming home from school in pain, it may be time to visit the doctor. Sitting for a long stretch of time can be difficult for JIA kids since their inflamed joint starts to ache more throughout the day. “In addition, it may be frustrating for kids who can’t do certain things due to joint pain and the limited motion of their joints,” says Erin Jansen, M.D., who works in Pediatric Rheumatology at Boston Children’s Hospital.
Before and after pain strikes, make sure your little one does some leg and hip stretches. Stretching improves flexibility, and flexibility helps counteract JIA stiffness. Also, “urge your child to talk to you about how they are feeling," says Dr. Jansen. "They are the best judge as to how their body is doing.”
A Blood Test Is Required for Proper Diagnosis
According to the American College of Rheumatology, a child or teen must have inflammation in one or more joints for at least six weeks, be under 16 years old, and have all other conditions ruled out before being diagnosed with JIA.
Your pediatrician will probably be the first doctor to start figuring out what’s causing symptoms in the inflamed joints. It’s likely that parents will be referred to a pediatric rheumatologist (a doctor with specialized training in treating arthritis). In order to get a proper and correct diagnosis, a medical history, physical examination, and blood tests will be required. Some of the common blood tests used to diagnose or monitor JIA include:
- Hemoglobin and blood count testing: This test looks at how many cells there are in the blood and what the cells look like.
- Erythrocyte sedimentation rate (ESR): This test checks the speed at which red blood cells sink to the bottom of a test tube. The more inflammation there is, the quicker the blood cells settle.
- Antinuclear antibody (ANA): This test looks for certain autoantibodies (immune system proteins) in the blood.
Kids With JIA Can Play Sports
“Prompt recognition and treatment of JIA, as well as the availability of many new medications, means most children do very well and generally are allowed to run and play sports without restrictions,” says Dr. Prahalad. Even when they are having flare-ups of arthritis, children are encouraged to self-limit their extracurricular activities but not stop completely. It's a good idea for your child to talk to his or her coach when flares happen about an alternate workout for the day, to keep JIA flares from getting worse. It also helps ensure that everyone is on the same page when it comes to taking it easy at practice or missing a game.
While a JIA diagnosis is scary, there’s a high chance your child will be able to go through life like nothing is wrong. “Having your child continue through life without complications is a major goal of therapy. Most children with JIA do very well after starting treatment,” says Dr. Jansen.
There Are Many Treatment Options
According to the Arthritis Foundation, early aggressive treatment is key to getting JIA under control. There are different treatments depending on JIA type and severity. If you’re worried about your child being on heavy pain relievers, don’t be. Typical medication includes many over-the-counter options like Advil or Aleve to reduce pain and swelling. Other treatment options include physical and nondrug therapies including isometric exercises designed to stretch and strengthen the muscles, and healthy lifestyle habits like eating a well-balanced, nutrient-rich diet.
“Treating arthritis is very important in childhood. If joint inflammation continues for long periods of time, it will cause permanent damage to the bones," says Dr. Jansen. If your child does need prescription meds, don't panic: Taking them now doesn't mean your kid will be on them forever. "Some children may be able to come off medications and stay off them for long periods of time,” she adds. However, it’s important to remember that every child is different and that some children may need to continue to take medication, depending on the severity of their JIA.
JIA Often Turns Into RA
About two-thirds of children who are diagnosed with JIA usually have a different type of arthritis in adulthood. According to an Oxford Academic study, adults who are diagnosed with JIA as children often experience significant levels of disability as a result of their pediatric diagnosis and JIA often turns into adult rheumatoid arthritis (RA). However, if there is a good transition from childhood to adulthood in terms of treatment, pain can be manageable.
“It is important to have regular check-ups and follow the medication regimen prescribed by your physician,” Dr. Prahalad says. Also, a healthy exercise routine such as yoga or daily jogging is encouraged to help maintain a gentle range of motion.
You’re Not Alone
When your child is diagnosed with JIA, it can be quite the shake-up. Luckily, there are plenty of other families out there who are going through the same thing. If you browse the pages of The Arthritis Foundation, American College of Rheumatology, or Childhood Arthritis And Rheumatology Research Alliance you can learn more about JIA, treatments, and tips for success for both home life and school. “These sites may also inform you about networking opportunities such as walks and arthritis camps that allow kids to meet others with JIA so they can make friends and build confidence,” says Dr. Prahalad. There are also online support groups on Facebook or you can find an in-person support group near you.