I Used to Be a Laid-Back Mom — Until My Daughter’s Diagnosis Changed Me

Image Source: Leslie Meadow Photography

I was never the mom who worried about germs.

Whenever there was an outbreak of a nasty illness at my daughter’s preschool, I still dropped her off with a smile. When she picked up random objects at the park and licked them, I mostly just laughed it off. And when friends would call before play dates to warn that their kids had the sniffles, I’d say, “Bring them on over! We can’t wait to see you!”

I was always of the mindset that my daughter was a kid, and kids get sick. Keeping her in a bubble wasn’t going to prevent that, and anyway, exposure to germs would help build up her immune system.

Whenever she got sick, I handled it. Rushing her off to the doctor was never high on my priority list. We waited out fevers and colds, and avoided antibiotics unless her illnesses just weren’t going away (which was rare). Usually, a fever just meant a few days cuddled up at home with some movies.

I was never the mom who panicked about these things … until my daughter was diagnosed with juvenile arthritis.

I’m guessing you didn’t know that was a thing. “Kids get arthritis?” Yes, and it’s a question I’ve grown used to hearing whenever I share her diagnosis. I didn’t know juvenile arthritis was a thing either, until it happened to us.

Juvenile idiopathic arthritis (JIA) is pretty rare. Only 300,000 kids in the United States have it. It’s an autoimmune condition, which means it’s more than just pain (though there has certainly been pain involved.) Basically, her immune system has been attacking her body. Before diagnosis, my daughter had stopped being able to do very simple things, such as climbing stairs or opening doors. Her joints were starting to get rigid, and she had weird rashes and pain all the time.

Of all the things I was told that could be responsible for her illness — from the initial onset of symptoms to her diagnosis four months later — JIA was actually the least scary. But after my relief faded, I realized that her diagnosis wasn’t necessarily something to celebrate.

If you met this child today, you would never guess anything was wrong.
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Every three months, my daughter has to have an eye exam; this disease produces a higher risk of a condition called uveitis, which can result in blindness if not caught early. Her dental appointments have increased in frequency as well, since the medication she is on is known to destroy tooth enamel. My daughter also sees a team of pediatric rheumatologists every six to eight weeks. And every Saturday night, I give her a shot of methotrexate—a chemo drug meant to slow down her immune system so it stops attacking her little body.

I was scared at first, mostly about the potential risk of infertility associated with this drug. Since I was told I was infertile at 26 years old and my daughter is adopted, the thought of this little girl I love so much going through infertility devastated me.

But thankfully, she responded to the medications almost immediately. Within days of being on prednisone (while waiting for the methotrexate to begin working), she was running and jumping again like a typical kid. And within a month, she was back to all her old activities.

If you met this child today, you would never guess anything was wrong.

We’ve been incredibly lucky. I’m a member of private Facebook pages for mothers of children with this disease, and not every kid has such a positive response to the first round of medications. Some see no improvement at all; others see improvement, but also experience debilitating side effects.

My daughter is among the 50 percent of kids who (knock on wood) seem to have very limited side effects related to this drug. It’s working. It has her healthy and happy again, and aside from the annoyance that a weekly shot brings, she’s otherwise fine with the whole thing.

We’re lucky. But lately, I find myself holding my breath, waiting for the other shoe to drop.

These Facebook pages and groups I’m on have been incredibly helpful in so many ways, but they’ve also exposed me to the scary side of this disease. For example, kids who have done well for years can have major flares out of nowhere that land them in wheelchairs and pull them from all activities. Or kids who, just like my daughter, have responded amazingly well to the drugs, can have a quarterly blood draw that comes back indicating kidney damage — which means they would have to go off the medications completely and start with something new, usually with far worse side effects.

I was scared that this could be the moment it all went terribly wrong.
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I’ve even been exposed to kids who have been so beaten down by the hard parts of this disease, they’ve admitted that suicide seems like a viable option.

It’s hard. And scary. And I may still have a little post-traumatic stress disorder from the whole diagnosis process when I didn’t know what to expect and terrible possibilities were on the table.

I used to be the mom who took illness and injury in stride, but now every complaint of pain has taken on new meaning. Is she flaring? Is it coming back? Have the drugs stopped working?

And because methotrexate is an immunosuppressant, every cough and fever now produces a heightened level of concern. The first fever she got since being on these medications happened about a month ago. Within minutes of seeing 102 degrees Fahrenheit on the thermometer, I was on the phone making calls to her doctor, the ER, and her team at Seattle Children’s. Me, the mom who previously would have given my daughter a popsicle and asked her what movie she wanted to watch.

I just didn’t know what to expect. I didn’t know what I was supposed to do … and I was scared that this could be the moment it all went terribly wrong.

I’ve since learned that of all the medications available for this disease, methotrexate is actually the gentlest on immune systems. But colds last longer for her; a month instead of days. And physicians want to see her sooner for fevers than they otherwise might.

But the panic I experienced that night isn’t necessary. In most cases, simple illnesses will be fine.

Still, my laid back nature in regards to germs and ouchies has become a thing of the past. And of all the things I hate this disease for, that’s pretty high up on the list; I just hate how it’s changed me.

And maybe with time, that will fade. Perhaps eventually, I’ll feel less shaky on this new ground and will go back to navigating those things as calmly as I once did.

But as for right now, I have this kid who seems perfectly fine to anyone on the outside … and yet I can’t stop watching her, waiting for the other shoe to drop.

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Article Posted 2 years Ago

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