Kids Get Arthritis, Too

Nikki, mom of 2016 Speak Now for Kids Family Advocacy Day Hero, Peyton, shares what it was like when a simple fall turned into a diagnosis of juvenile rheumatoid arthritis (JRA). Read Peyton’s original post here:

rsz_akron_childrens_hospital_domers_peyton_photo.jpgIt began with a typical fall of a toddler. She fell at a relative’s house and didn’t even really hit her knee. After a forty minute car ride home, she couldn’t walk. Peyton cried when she tried to put weight on her right leg and could barely move it. The swelling – it was unreal. It was like someone had stuffed a small orange in her knee. Off to the emergency room we went.

The physician came in and explained it was probably a bad sprain and that her x-rays were clear. But we needed to follow up with orthopedics at Akron Children’s Hospital if it didn’t start getting better within a week. We saw an orthopedist twice that same week due to her pain, continued swelling, lack of movement, and most concerning – her inability to walk much. They went over her x-rays and took blood to look for bacterial infections and Lyme disease which all came back negative.

Then we were hit with, “Well, your next step is to see a pediatric rheumatologist.” Surely they were wrong; kids can’t get arthritis, right? Of course we did what they tell you not to and went straight to Google. It was scary. Her symptoms matched everything. The pictures of swollen joints were now the pictures of her.

Peyton was diagnosed on the spot eight weeks after her fall, and two weeks later diagnosed with severe uveitis in both eyes. Life became a whirlwind of tears and emotions. Our lives were (and still are) consumed by doctor appointments; sometimes three times a week, emergency room visits, blood work, paperwork, medications, and toughest of all – giving our child injections to save her joints and eyes.

Not only do we continue to battle arthritis and uveitis, it feels like a constant battle with our insurance company because they don’t want to cover a medication, blood work, or even her shoe inserts. Oh the yelling I’ve done…definitely not my finest moments. Perhaps one of the most frustrating things is people’s comments about how she’ll “grow out of it,” or, “just change her diet,” and, “just pray and God will take it away.” If it were that easy, she would have kicked this disease the moment she was diagnosed. My favorite was at the airport and a TSA agent told Peyton strollers were for babies. I looked at that woman with gritted teeth and told her Peyton has arthritis.

There’s no way around it: JRA just sucks. As a parent, there are many times you feel like you’re going to break. Somehow, we keep chugging along. But through all the bad, we’ve learned to deal with this disease and only take it day-by-day. We’ve also learned how to be strong on so many levels.

Through her condition, Peyton has taught us to fight and be strong. She has taught us what bravery really is. Her disease may be invisible, but she is not.

Click here for resources regarding juvenile arthritis

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commented 2016-07-25 08:28:12 -0400 · Flag
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