This is a personal blog article about my daughter, she's only 5 years old, and she recently was diagnosed with "Juvenile Idiopathic Arthritis."
Let me back up a little bit. I enrolled her in preschool gymnastics in September 2012. She really enjoyed it. I noticed she wasn't as flexible as other kids, but I just assumed she'll eventually "catch up" in time. She was only 4. The instructor came up to me and said she seems to be having a hard time with her right wrist. She cannot bend it 90 degrees. She showed me, if you "pray" and lift your elbows up, your hands should still be touching. Like this:
She couldn't. Only her fingers can touch but not the bottom part of her hands. I kept her feedback in my head. I figured, she's only 4... no gymnastics prior, so maybe this class will help her!
So, here came April 2013, I took her to her annual check up, near her 5th birthday. I mentioned what the gymnastic instructor told me. Her doctor looked over her wrist, and noticed that she does have a problem. She looked it up, and told me she assumed, it could be a case of "Madelung's Deformity," but she'd like to have her wrists x-ray to make sure. We went next door to get xrays done. And scheduled an appointment with a orthopedist, and waited several months for an appointment. We finally came in, and the specialist looked over her xrays and confirmed that it is NOT Madelung's Deformity. She agrees that there is
something wrong with her wrist, so she referred us to a rheumatologist that is an hour and half drive away. So, we made another appointment immediately. That was last Thursday.
We got there late because of a huge accident on the freeway, but they were understanding. The specialist asked me 1000 questions, mostly about family history, current history, etc. And she looked over the xrays, and examined my daughter, and confirmed it is "Juvenile Idiopathic Arthritis." She explained, that it can fall into many different categories. My daughter is in the oligoarticular group. And it's not THAT serious, it's like a hiccup in her life. She never had an injury, or never gotten really sick. "An unfortunate combination of these unknown factors in certain genetically susceptible children leads to an abnormal and overactive immune system that results in painful, swollen joints."
Wow. I stared at the doctor like a deer in the headlights. I had a hard time wrapping it in my head. First of all, I never even heard of it. And I thought only old people gets arthritis. She's only 5... She's still a baby.
The doctor gave me a thick red folder full of information about arthritis in children. And scheduled another appointment, for a follow-up and occupational therapy. I also had to make another appointment for ophthalmology. She will have to have an eye exam every three months for the next several years. Wow...
We walked out and I was still trying to comprehend it. Do we have a long battle with it ahead of us? Is it just a short term thing? I was utterly clueless.
That same night, I must have done three to four hours of reading about it online on my ipad. The more I read, the more scared for her I get. I had to breathe and take a step back and remind myself, that it's not all that serious like the doctor told me. Yes, there are scary stories about kids with arthritis.
I am searching for some kind of support group. I thought I found several on Facebook, and asked to join, but I haven't been accepted into the group yet. I am actually going crazy, because I do want to find support for my daughter. Will she get worse? Will the medications and therapy help? Am I making a mountain out of a molehill? Will she remember this when she's 15? I had more questions than answers.
I wrote this blog to help raise awareness about JIA, and if you do know anyone, or anybody who happens to have JIA, I would love to hear from you.