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About seven weeks ago, I was told that my daughter might have juvenile arthritis (JIA). It was the first answer that made sense — and didn’t completely terrify me — after months of hospital visits, invasive testing, and being convinced my daughter had everything from meningitis to brain tumors to leukemia. Here’s our story and what to do if your child has similar symptoms.
If you were to ask me how it all began, I would take you back to the last week in January when my daughter started complaining about neck pain. Only, she wasn’t really complaining. She’d mention something about her neck hurting and then run off to play. I figured that maybe she’d slept funny and pulled something. She was so happy and otherwise undeterred by whatever was going on. I certainly wasn’t worried.
That was until about a week after the initial complaints started. I picked her up at school and immediately knew something was wrong. For one, she didn’t run to greet me like she usually did. She had this little limp going on when she walked. She told me her knees hurt. There was a note from her teacher mentioning she’d been complaining about her neck.
I decided I’d call the doctor for an appointment the next day. But when we got home she physically couldn’t walk up the stairs. My active and healthy 4-year-old was a puddle of tears, begging me to carry her. And as the night went on, things just got worse. Right up to the point when she collapsed on the floor sobbing about how bad her neck hurt, how much it hurt to walk.
Immediately I thought: It’s meningitis. I scooped her up and off to the ER we went.
Once there, it became clear she couldn’t bend her neck at all without wincing in pain. She still had that limp also. But after an initial exam, X-ray, and blood work, the doctor we saw was convinced this wasn’t bacterial meningitis or an emergency. “Follow up with her doctor the next morning,” she told us upon discharge.
We got in to see my daughter’s doctor right away the next day. After examining my little girl, she ordered an MRI of her head, neck, and spine. “I just want to make sure there’s nothing going on in there,” she said. I knew what that meant. She was looking for tumors in my daughter’s head.
I was terrified the next day as we prepared for the MRI. My daughter needed to be put under anesthesia because of her age and the two hours she’d need to remain completely still. When her doctor called me an hour after the procedure was over to tell me everything was clear, I realized I’d been holding my breath for 24 hours. “She’s probably got some weird viral infection,” she told me. “Let’s give her a week, and if her neck is still stiff, I want to see her again.”
Over the next few days, my daughter seemed to be getting better. She stopped complaining about her neck. I never made that follow-up appointment.
But in the weeks that followed, she continued to have minor complaints about pain. Her wrist hurt one day, her knee the next. It seemed like normal growing pains to me. I figured she was maybe still getting over whatever virus had caused her neck pain in the first place. That was until the day in late March when I picked her up from school and saw that same look of agony in her eyes.
It was another night of tears and pain. The next morning I was on the phone with her doctor begging to be seen.
At the actual appointment, my little girl seemed fine. She was happy and playful. I felt almost silly for being so adamant about getting her in. But then her doctor began the exam and it quickly became clear my daughter’s wrist was locked tight.
Her doctor explained there’s a difference between arthralgia (joint pain) and arthritis (inflammation of the joint.) What was happening to my daughter’s wrist was clearly the latter.
I felt terrible. I had no idea her wrist had even lost any range of motion. It wasn’t what she’d been complaining about most, which were her knees. I hadn’t noticed her avoiding using her wrist.
Of course, now that I knew, I saw the ways she was overcompensating for her wrist in everything she was doing. I still have no idea how long it had been going on. That fact alone fills me with major mommy guilt.
Another set of X-rays and blood work came back mostly normal, and so we were left to figure out what might be going on. As my daughter’s doctor explained it to me, there are a lot of things that can cause arthritis in children: several autoimmune conditions (including lupus and Lyme disease), juvenile idiopathic arthritis (of which there are several types), and leukemia.
I’d be lying if I said that last one doesn’t still keep me up at night.
We were immediately referred to a pediatric rheumatologist. My daughter was put on twice daily naproxen to help with the pain as we work toward finding an official diagnosis. I wish I could say that alone has made everything better, but we’ve had several pretty intense pain episodes in the weeks since. In a lot of ways, my daughter’s pain only seems to be getting worse.
We’re still in the diagnosis stage. The doctors are pretty sure she has some type of JIA, but it can take up to six months from the original onset of symptoms to know that for sure and to be able to identify which type. It’s possible what we’re seeing is still a reaction to some virus. Or she could have one of the types of JIA most kids recover from after a few years.
It’s also possible this could be something she’s dealing with for the rest of her life.
Right now, we don’t know what’s coming next. But over the last month I’ve done a lot of reading and researching. I’m learning that our experience is not entirely uncommon. When kids start complaining about things like joint pain, it’s hard to take them seriously at first. They’re so little, after all, and when they throw out a complaint and then run off to play, it’s easy to assume it’s something minor or those infamous growing pains. It’s especially easy to assume something minor when blood work comes back normal, which can happen over the first few months of JIA onset.
So how do you know when that pain they’re complaining about isn’t just something normal all kids go through? Here’s my one piece of advice: Trust your instincts.
For us, a lot of it came down to mommy gut. My kid handles pain pretty well. I’ve seen her run head-first into a high table, falling back because of the force, only to jump right up laughing and ready to keep going. But when she was reduced to actual tears because of this pain … I knew it was something real.
There can be a lot of causes for joint pain in kids with a lot of accompanying symptoms. Cleveland Clinic provides a list to guide parents in differentiating growing pains from something more serious. Symptoms to watch out for include:
- persistent pain, pain in the morning or tenderness, or swelling and redness in a joint
- joint pain associated with injury
- limping, weakness, or unusual tenderness
If your child is experiencing any of those symptoms, they need to be seen by their doctor. Joint pain combined with a persistent high fever or rash may be a sign of something more serious, so get your child to a doctor right away.
JIA is somewhat rare, affecting nearly 300,000 infants, children, and teens in the United States. But JIA is not the only thing that can cause joint pain. When in doubt, you should always follow your gut and get your child seen by a doctor who can help you assess their symptoms.
Leah Campbell is a writer and editor living in Anchorage, Alaska. A single mother by choice after a serendipitous series of events led to the adoption of her daughter, Leah is also author of the book “Single Infertile Female” and has written extensively on the topics of infertility, adoption, and parenting. You can connect with Leah via Facebook, her website, and Twitter.