I remember lying awake at night as a kid, rubbing my hands up and down my painful legs.
"They’re just growing pains," my parents would say, adding that the pain would go away eventually. And they were right. Within a few days, my legs would feel fine again. My daughter wasn’t so lucky.
The first time I brought her to the emergency room, I was sure she had meningitis. At just a few weeks shy of her 4th birthday, she had come home with a note from her teacher saying she’d been complaining about her neck hurting most of the day. By the time we got to our house, she needed to be carried up the stairs. She said her legs hurt too much to climb the steps.
I thought maybe she was just being dramatic or perhaps she was simply overtired. But then she collapsed on the floor in a puddle of tears, moaning about the pain between sobs.
She was inconsolable, and my stomach dropped. This didn’t look like the growing pains I’d experienced in my youth. I drove her to the ER immediately.
Four hours later, all the big bads had been ruled out. We were sent home, but told to follow up with her pediatrician in the morning. What followed was months of ER visits, referrals to specialists, countless blood draws and two MRIs my little girl had to be sedated for.
She would have good days and bad days. On the bad days, her hands hurt so much she couldn’t open doors and she wanted to be carried everywhere we went. On the good days, she almost seemed back to normal—running and playing and halfway convincing me I must have been going crazy on the bad days. Could her pain really be just growing pains?
If your gut is telling you this is something more than growing pains, listen to it.
It was her second MRI that finally gave us answers and ruled out growing pains once and for all. My daughter had a diagnosis: polyarticular juvenile idiopathic arthritis (JIA).
If you’re confused, don't worry—I was too. I had no idea kids could get arthritis, which was fair because it’s pretty rare. There are only 300,000 children diagnosed with JIA in the U.S. My daughter’s type, polyarticular, indicates the involvement of five or more joints at the time of diagnosis. Her wrists, hands, knees and ankles have all been impacted so far.
This isn’t your grandma’s arthritis. It’s not the result of aging or wear and tear. My daughter’s immune system is literally attacking her joints every day. Without treatment, she could have experienced permanent joint damage.
At first, I was grateful for her diagnosis. Throughout the course of seeking answers, I had been given a lot of scary possibilities for her symptoms: leukemia, tumors, multiple sclerosis. Arthritis was one of the better explanations for her pain.
But as relieved as I was initially, learning more about what my daughter’s future will hold was hard. Her blood work indicates she’s not likely to ever go into remission. Her treatment calls for the weekly injection—which I give her myself—of a chemo drug meant to slow down her immune system so that it will stop attacking her body.
She has to have regular appointments with an ophthalmologist, because the inflammation can actually attack her eyes—a condition called uveitis—causing blindness if not caught soon enough. Her medication can cause organ damage, so she requires regular blood draws as well. She’s immunocompromised now because of that medication, and there is the likelihood she’ll need to transition to even scarier drugs in the future.
But she’s active again. She’s playing and running and living the life of a happy 5-year-old. So, I’m taking the small wins where I can.
This experience has also been a great reminder to trust my mommy gut. That's the only sure piece of advice I can give to parents in similar situations who have reached out.
Diagnosing JIA takes time and symptoms can be varied. It took us almost four months from that initial ER visit to get a diagnosis, and her blood work didn't confirm anything until almost a year after her symptoms began. And we were lucky. The wait, as you watch your child in pain, can be maddening.
But if your gut is telling you this is something more than growing pains, listen to it. Keep pushing for answers until you have them, no matter how long that may take.