Editor’s Note: This post is not intended as medical advice. Always consult a medical professional or physician before treatment of any kind.
It started with a trip to the emergency room. My daughter had been complaining about her neck for almost a week, but it was weird — she would say her neck hurt and then run off to play. So I figured maybe she had slept on it wrong, or pulled it somehow while playing. I never thought it could be something serious. She’s 4. What could she have possibly done to her neck to cause any real concern?
That afternoon when I picked her up from school though, I knew something was wrong. She didn’t run to greet me as she usually does, and when she started walking I noticed she was almost limping. “What’s wrong?” I asked. “My knees hurt. And my neck.” She said, looking down.
Her teacher had left a note about how when she had gone to clean her face that day, my daughter had yelped out in pain. Just moving her face had caused her to hurt. I knew that this was no longer something I could ignore. I’d call the doctor in the morning.
Only, we didn’t make it until then. When we got home, my little girl couldn’t walk up the stairs — I had to carry her. And at some point before bedtime, she just collapsed on the ground in tears. Her knees hurt. Her neck hurt. She couldn’t walk. The lights were too bright.
I was sure she had meningitis, so we rushed to the emergency room.
What followed is a long and complicated story. Her symptoms came and went. Once meningitis was ruled out, I was told it could be a virus. Or leukemia. Or a brain tumor. Or multiple sclerosis.
All these terrifying possibilities were mentioned to me over the course of four months as she was sent to specialists, sedated for MRIs, poked for blood work, put on medications that made her sick to her stomach, and more medications to combat the stomach upset.
Finally, I got a call confirming diagnosis—my daughter has juvenile idiopathic arthritis (JIA).
If you didn’t realize this was something kids could get, you’re not alone. It’s rare — only 300,000 kids in the United States are afflicted with this autoimmune condition. I’m still learning about what this means for my daughter’s future myself, so I’ll spare you an oversimplified explanation that I’m not qualified to give. But I will tell you this: when I heard the diagnosis, I was relieved. Because of all the things this could have been, arthritis seemed the least scary.
Then I started researching the drugs my daughter would be placed on: prednisone and methotrexate.
The prednisone is temporary. It’s mostly meant to provide quick inflammation relief until the methotrexate can begin working. But it’s a steroid, and anyone who has ever needed to take steroids will tell you there are side effects that go along with that.
For my daughter, those side effects have at least been on the mild side of things. She’s constantly starving since starting this med, and she’s definitely having a harder time sleeping. She’s also struggling with some behavioral issues that can be attributed to the drug — namely impulse control and extreme emotions — but it has absolutely helped to combat her pain. She’s running and climbing again. She’s playing. She’s happy.
So, I’ll take it. Though I’ll admit it’s easier to say that knowing she will only have to be on prednisone for a few months.
It’s the methotrexate that’s been keeping me up at night. This is a chemo drug; an injection I personally have to administer once a week for at least the next year — and possibly forever if it works and she’s not one of the lucky few who sees a full recovery from this disease in childhood.
I’m a researcher at heart. I look into everything I give my child. And that first night, researching this drug, I came across a study linking possible infertility to JIA patients using methotrexate.
My heart stopped. Every ounce of relief I had felt in hearing her diagnosis was stripped from me. I was brought back to those years I fought (and lost) against infertility myself. Those years of agony before adopting my little girl.
I thought about how I still hurt a little whenever I see a pregnant belly. How I still wish I had been the one to carry my daughter, saving her other mama the pain of separation and providing myself the opportunity to care for this little girl I love so dearly from the start. I thought about all those nights I cried, afraid I would never be a mother at all. And I ached at the memory of how infertility made me feel less like a woman — how it made me hate my body for all the ways it had let me down.
I don’t want any of that for my daughter. And while this study is still in the very early stages, and I have since spoken to many adult JIA patients who were able to conceive after years on this drug, my heart still hurts. I didn’t lose my own infertility because of some random stroke of bad luck. I donated my eggs in college and wound up being one of the rare few to have an adverse reaction to the medications involved.
I was that “small percentage” doctors don’t even like telling other egg donors about.
It happened to me. A drug led to a series of events that left me barren.
The thought of that happening to my little girl destroyed me. I spent that night huddled in a ball of grief, finally processing all the fear of the previous four months, remembering all the heartache that accompanied my own infertility journey, and wanting so much more for my little girl. My 4-year-old. This child who doesn’t even know what any of this means yet.
The next day I went into research mode. I called a friend who is a pharmacist. I spent time on the phone with a doctor discussing my concerns. I connected with other moms of JIA patients, as well as adults diagnosed with JIA as children who had been on this drug before. I asked questions. I looked for alternatives. I sought answers.
And everyone told me the same thing: my daughter needs to be on this drug. No one can definitively say yet that there is a link between this medication and infertility (the research is still too new), but everyone can tell me that not treating her condition will lead to a lifetime of pain and struggle. Right now, preventing permanent damage to her joints has to be the priority. Of all the options available, this is the one with the least scary side effects. And it might not even work. She might eventually need to try something else. But for now, this is the drug she needs to be on.
I can try alternative therapies, too. There is a lot to be said for anti-inflammatory diets, for instance. But everyone I spoke to was clear on this one point: alternative treatments are a great way to supplement her care. This drug is still necessary to help her joints be as healthy as possible in the long term.
So here we are.
I’ve given my daughter two shots so far. Both times she cried just for a moment — the moment the needle punctured her skin. Both times I had to fight back the tears myself. I’ve had to slap a smile on my face and rave about how brave she is. I’ve had to pretend that this is all okay. I’ve had to force myself to remain in the here and now — not thinking about tomorrow, or next year, or the point in time (should the day ever come) when my daughter decides she wants to be a mother.
I’ve had to breathe. And it has been hard. I am sad. I want something better than this for her.
But I’m also insanely proud of my strong little girl, who has taken each hit over the course of these crazy last few months in stride. My daughter is a fighter. And if nothing else, at least I know that no matter what comes, she’s got it in her to fight.