What it’s like raising a child with juvenile idiopathic arthritis (JIA)

The first time my daughter was sedated for an MRI, it was to “check to make sure there’s nothing worrisome in her head.” Those were the exact words her doctor used.

I knew what she was saying—they were looking for tumors. But she said the words as lightly as she could, a strained smile on her face, trying to keep me calm even as we both knew something was wrong.

Searching for answers

My daughter had been complaining about her neck for over a week. The night before, those complaints had erupted into screaming and tears, prompting me to scoop her up from the floor and rush her to the emergency room. By the next day, she was dragging her right leg behind her. Her neck was stiff. Meningitis (my first concern) had been ruled out, and now there was this MRI—happening right away.

That too came back clear. And by the time we left the hospital, my daughter seemed mostly recovered. “Some weird virus,” her doctor guessed. And we both hoped she was right.

But then it happened again.

Over the course of the next several months, my daughter was poked and prodded countless times. She was seen by professionals and evaluated for everything from leukemia to juvenile idiopathic arthritis (JIA).

It was the latter that made the most sense. By this point, my daughter’s wrist had also locked up completely. And yet, there were things about her presentation the pediatric rheumatologists said didn’t add up. They ordered another MRI and told me if that didn’t show definitive signs of arthritis, they would be referring her to neurology.

Symptoms of juvenile idiopathic arthritis

Common symptoms of JIA include:

• Joint pain, especially in the morning or after a nap
• Joint inflammation usually presented in knees, hips, elbows, or shoulders
• Stiffness that may be presented as a limp or clumsiness
• High fever
• Swollen lymph nodes
• Skin rash around the torso

You should take your child to a healthcare provider for a thorough physical examination if he or she has any of these symptoms lasting longer than a week. The doctor may also order blood tests or an X-ray to rule out other autoimmune diseases with similar symptoms.

Getting a juvenile idiopathic arthritis diagnosis 

Thankfully, in my daughter’s case, that MRI did provide proof of arthritis. I say thankfully only because the alternatives were actually worse—some with potential outcomes I don’t even like to think about now. While I had never heard of JIA prior to my daughter’s ordeal, and had never even realized kids could get arthritis at all, this at least seemed manageable. After all, plenty of people deal with arthritis, right?

That was my thought process at least. But then I learned more about what JIA would involve; what it would mean for the rest of my daughter’s life.

What is juvenile idiopathic arthritis?

“Juvenile idiopathic arthritis is the most common type of arthritis in children and teenagers,” says Leann Poston, MD, a licensed physician who previously practiced pediatric medicine and now contributes to Ikon Health. JIA is formerly known as juvenile rheumatoid arthritis (JRA). “It is an autoimmune disorder, which means it is in the class of disorders in which the immune system cells have difficulty telling the difference between self or cells that make up a person and non-self or invaders.”

In layman’s terms: The immune system attacks the joints.

Does juvenile idiopathic arthritis go away?

There are seven types of JIA, each representing different levels of severity:

1. Systemic JIA
2. Oligoarthritis
3. Polyarticular arthritis, rheumatoid factor negative
4. Polyarticular arthritis, rheumatoid factor positive
5. Psoriatic arthritis
6. Enthesitis-related arthritis
7. Undifferentiated arthritis

My daughter has been diagnosed with the type of JIA called polyarticular JIA, which means she has more than five joints involved (we’ve actually stopped counting all her affected joints at this point, there is just too much involvement to keep track of). Her type is the least likely to be grown out of—in all likelihood, she will have arthritis for the rest of her life. 

JIA is a chronic disease, with no cure. Yet, with treatment, remission from symptoms is possible. Experts believe that the more joints affected, the less likely the symptoms will go into remission.

Juvenile idiopathic arthritis treatment

Treating my daughter’s JIA involves medications meant to weaken her immune system so that it stops attacking her body. For now, she’s on a chemo medication called methotrexate. I give her an injection myself every Saturday night. It renders her immunocompromised and comes with a long list of side effects, which include headaches, chronic fatigue, and recurrent canker sores. A daily dose of folic acid helps to ease those side effects some, but not entirely. Still, it allows her to continue running and playing like the child she still is. And for that, we are thankful.

RELATED: Helping young children adjust to injections

Other treatment options

Depending on the form of arthritis, flare-ups of JIA may be manageable with nonsteroidal anti-inflammatory drugs (NSAID) such as ibuprofen or naproxen, and joint damage can be slowed or prevented with physical therapy. In severe cases, steroids may be prescribed along with biologic agents such as anakinra, canakinumab, or tocilizumab. JIA rarely requires surgery; although some complications include eye inflammation and growth problems.

Finding our juvenile idiopathic arthritis support group

Today my daughter is 7 years old. She is one of the nearly 300,000 children in the United States who has JIA. It’s a small, but tight, community—one I am thankful we have been able to immerse ourselves in over the past several years.

As a single mom caring for a child with a chronic health condition on my own, I’ve often felt very alone. But through Facebook groups, national conferences, and even an annual JIA family camp, I have been able to find my support system.

Seeking out these sources of support is a suggestion Emma Crowley, head of patient advocacy for the University of Florida’s Powell Center for Rare Disease Research and Therapy, makes to all parents of children with chronic illnesses.  

“Often, parents are hesitant to [do] this, but it’s not only to help emotional distress,” Crowley explains. “Support groups, in person or online, are full of other patients who have been where you are. Not only can they genuinely emphasize with you, but they can teach you. They’ve created their own tips and tricks that are passed on. Especially among rare diseases, many of these support groups are very close.”

I’ve connected with other moms who know what it is we are up against and who have been able to offer me advice when I’ve been lost in the sea of choices I’ve had to make. And because of those connections, I’ve even been able to hire a teenager with JIA to help babysit my daughter—someone she can connect with and be supported by even when I don’t fully understand what she’s going through.

This community has become our family. And having that family has made every step of this journey so much easier to handle than it otherwise would have been.

COVID has added some additional challenges to that journey—my daughter’s doctor recently told me to plan on keeping her home from school next year, regardless of what the school system decides. But even in that, we’ve known we aren’t alone, surrounded by other families in a similar boat, all trying to figure out our next steps together as we work to keep our kids safe.

And I suppose that’s the biggest lesson of all when it comes to parenting a child with a chronic health condition: You learn to adapt.

I’m just thankful we’ve never had to adapt alone.