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My story is about my Granddaughter, Kayla. When she was 2, we noticed she wasn’t using her fingers for some things. Like pulling herself up onto the kitchen chairs. I had heard/read a little about juvenile Rheumatoid Arthritis so it made me wonder… My daughter took Kayla into her pediatrician. He was our family peds doctor, I recommended him to everyone! I thought he walked on water! Now I’d like to hold him under the water! JK.
At the appointment he told my daughter that her elbow was swollen, too. He said there was no way that could just happen so she must be being abused. ABUSED? Hardly. Anyway, he called Child protection and the cops came! It was terrible. they said they had to call child protection. ANYWAY, it took 6 months for my daughter to get that taken care of. So they referred Kayla to a bone doctor. He ran a bunch of tests and told us it would be a few weeks to get the results. He called much sooner than that because the rheumatoid one had already come back. That started our experience with JRA. I don’t think they call it JRA anymore.
Now, Kayla is 13 and has had several injections in the joints, a weekly Enbrel injection. She has a knee flaring up right now, so they gave her an injection and started her on Humira injections. We are SO lucky to have met Dr. Patrick Knibbe! He takes care of our girl! Plus he has fun events for the kids and while they are playing, he educates us parents and grandparents on new things that are coming up. You couldn’t ask for a more involved doctor. Next thing he is having is a transition class. Getting these kids to give their own injections, so when they go to college and stuff, they will be able to keep taking their meds.

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  • kayla holt
    4 years ago

    My name is Kayla, this was posted on my birthday. I didn’t even look for this, it came to me. I think it’s meant to be.

    My great aunt who took me in as her daughter noticed I had arthritis at age 2, actually when I was a newborn but she wasn’t positive about it until I was 2. My bio Mom was too scared to take me in to be seen. My aunty Mom took me in when I was 6. I was diagnosed with chronic arthritis. We thought I was seeing a good doctor because everyone else loved him. He eventually told her I had outgrown it & only had growing pains. We pleaded with him, told him we knew the difference but he wouldn’t listen. When I turned 12 I spent a week in a hospital alternating demoral & morphine through IV. They didnt know that negative rheumatoid factor was a thing. After they finally did were able to do xrays, they saw the evidence of JRA. I was referred to Seattle children’s because my JRA was to advanced for the doctors I was seeing.

  • Mariah Z. Leach moderator
    4 years ago

    Hi Sandy ~
    Thank you for taking the time to share Kayla’s story with us. I am so sorry that her diagnosis was such a difficult experience for everyone, but I am glad to hear that Kayla’s condition is getting better treatment today. She is lucky to have a grandmother and mother who love and support her as much as you and your daughter do!!
    ~Mariah~ (Site Moderator)

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