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recently new to jra

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LisaMarquis

Posted Friday, October 31, 2003 9:52 AM

Group: Forum Members
Last Login: Thursday, July 31, 2008 12:31 PM
Posts: 79, Visits: 0

Lisa, My daughter Arianna was diagonosed with Poly on 8-19-03. She is also 3 years old. Arianna has a minimum of 24 joints effected at this point. Like your little trooper, Arianna hardly ever complains. It is amazing how strong children are. Most people are stunned when we tell them about her condition, because she does not "look" like she is in pain to the outside world. Arianna is taking 1cc of Enbrel 2x week and she is also on Prednisone and Advil. I have days when I just can't even look at her because I know she hurts and I can't do anything about it. When people ask how we are doing I tell them the truth, today is a good day or today is a bad day. Take care of yourself as well as your little one, things will get better. Take care, Lisa - mom to Arianna and Griffin

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KjGohlke

Posted Tuesday, November 04, 2003 12:34 PM

Group: Forum Members
Last Login: Thursday, July 31, 2008 12:28 PM
Posts: 1, Visits: 0

Hi Lisa, I feel for you and what your little girl are going through. My name is Kristina, and I've had Poly JRA my whole life. I'm 32 now. I am one of those who never became crippled from the disease nor outgrew it, so I still live with pain of flares and the thrill of remission. As a child my doctor told me the disease would go away (presumably because the rheumatoid factor did not and still does not show up in my blood - an indicator they use to predict that). But it didn't. It's part of me. I guess the best thing I can say to you is to have a doctor you and your daughter both really like. It makes a lot of difference in dealing with a chronic illness. Eventually she will know JRA as a part of who she is; she will own it and not the other way around. I think I ended up that way because although I knew I was a little different, no one ever treated me as if I was 'sick' or refused to let me try things. Eventually I figured things out for myself and made concessions based on what I wanted for myself. Your daughter will be great. As she gets a little older, JRA may still be with her, but she will learn to gauge her own pain and to know days as good or tough based on that. The best thing you can do for her is to be compassionate and listen and believe her. You're already doing great by coming to this site and talking to others. Good for you. =) Feel free to write if you'd like. Kristina kjgny@yahoo.com

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HopeWhite

Posted Friday, November 07, 2003 11:31 AM

Group: Forum Members
Last Login: Thursday, July 31, 2008 12:33 PM
Posts: 5, Visits: 0

Hello.....my name is Hope & my daughter has JRA in about 30 joints (Poly JRA), her Dr. can't get a true count because it hurts so bad. Chloe was the same way never complained, she just looked uncompfortable. She was just diagnosed in June & also has Hip Displasia & wears a Scottish Rite brace so we had double dose of bad news. Chloe takes, Naprosyn (2x daily), Methotrexate (2cc 1x wk), Enbrel (3cc 2x wk). She has made wonderful improvements with her med's especially the Enbrel!! She can walk up & down steps, climb on the furniture & even has tried to run......It is hard to watch our children so innocent be in pain. All of our friends had no idea there was such a thing as JRA, they said well what does that mean & basically we explain it's just like the adult disease, only in little people. The med's really work wonders & I hope that your daughter will do well on the Methotrexate!! Take Care & Stay Positive! Hope ~ Mommy to Chloe

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