Monday, January 12, 2009

Abby's Diagnosis


At the beginning of the summer of 2008, we noticed that Abby would "walk funny" from time to time. We couldn't really put our fingers on exactly what she was doing but we knew that it wasn't right. She would only do it for a day or two and would be fine for a few weeks and then she would do it again. We kind of dismissed it as just her messing around and we weren't really too concerned. We had mentioned to the doctor before that she walked on her toes alot and that she seemed to fall down more than she should and for no apparent reason, but the doctor wasn't really concerned so we weren't either. I mean nobody wants to think that there is something wrong, so if the doctor wasn't, we were not going to worry either.

Then in late August she started limping in the mornings for about an hour or so and then she was fine. This started to concern us so we turned to the internet and read about JRA. We jokingly said to each other, " I think Abby has arthritis." We kind of chuckled and thought leave it to Abby to come up with this one. I don't think either one of us really believed it, but we took her to her pediatrician anyway. She didn't seem overly concerned but she mentioned JRA and said we should have bloodwork done and no matter what the results we should go see a Pediatric Rheumatologist to have her examined. We took her for the bloodwork the next day and as we walked up to Wolfson's Children's Hospital I started to feel sick. I was thinking that this just cannot be happening to us. Abby has always been a go getter and to think that she could have something like this just brought me to tears. While we waited for the results her doctor told us to give her Motrin to treat the symptoms for now and so that is what we did.

About 4-5 days later I called her doctor to see if we could give her more Motrin because her limp was not getting any better. She told me to increase her dose and that her lab results had come back in. It wasn't the news that we were hoping for. Abby had a high SED rate which indicates inflammation and we needed to go see the Rheumatologist ASAP. She referred us to a local doctor and we got an appointment 3 weeks later. During those weeks Abby continued to get worse and seemed to start having pain with it. Her ankle was swelling and was warm to touch, but she still only had her symptoms first thing in the morning and after nap.

At our appointment the doctor confirmed the diagnosis and prescribed physical therapy, Naproxen and Zantac, and gave us a referral to the opthamologist. Over the next few months we began her therapy, gave her the medicines, and watched her continue to decline. There were days when she would just drag her leg behind her and when she did use the leg she turned her foot out and her symptoms gradually got to the point where they lasted all day long. She also started to complain about her foot hurting on a daily basis.

At this point we decided to get a second opinion so we went to The University of Florida and saw a wonderful Pediatric Rheumatologist. She seemed very optimistic for Abby and increased her dose of Naproxen and during a later visit switched her to Methotrexate, which is actually a chemotherapy drug. She also informed us that Abby is a high risk for developing the eye inflammation associated with JRA so she will need to see an Opthamologist every 3 months for the next four years no matter if she goes into remission or not.

Currently it seems that the Methotrexate might be working. She had a good physical therapy session today and seems to have more range of motion. We do not know what the future holds for our precious angel but we are hopeful that she will be able to do everything in life that she wants to do and we will all be right there supporting her. Despite this disease she just keeps on trucking and brings joy to our lives everyday with her beautiful smile.

3 comments:

  1. This blog was a good idea.
    I am SO glad to hear that she is doing well right now. Let me know if we can do anything to help!

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  2. Hi, I just wanted to say hello. I know how you are feeling. My daughter was diagnosed last march at 18 months old. I too, have started a blog if you are interested. It has been a long and rough 10 months. After 3 months on the methotrexate, it seems that things are getting better. I am glad to hear that Abby is doing well. It breaks my heart to see these children in pain and suffering. Good luck with everything
    Lesli-onedayatatime.blogspot.com

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  3. Hi! I found your blog through Lesli's. I completely know what you are going through. And just wanted to tell you that you are not alone through all of this. My daughter, Mia, was diagnosed with JRA at 22 months. She, too, was dragging her leg when she walked and would cry in her sleep at night. We were desperate to try anything that might bring her some relief. The doctor put her an Naproxen, but we also tried some "natural" remedies.

    A friend whose daughter also has JRA, told us about putting Mia on a gluten-free, dairy-free, eggless diet. It sounds difficult, but really it isn't. She also suggested 1 tsp of cod liver oil a day. Cod liver oil helps to decrease inflammation in the body. They make it in lemon flavor - both of my kids, Mia (3) and JJ (21 months) take it with no problems. Within a month we saw immediate results. Her knee went from -20 degrees to -10 and her sed rate started to drop. We continued the diet for a year and then in December 2008 her rheumy said she had "no evidence of arthritis in her body." We were thrilled...but the ride wasn't over yet. We started to wean her off of the Naproxen and did it a bit too fast. And we started getting lazy with the diet, too. I think it was our fault - we were sooo exhausted from the past year and everything she went through. Being parents to a child who has JRA is TOUGH!! She is in a flare right now and we are back to square one.

    Anyhoo, all this to say you are not alone in this! Have you tried switching her diet? Most pediatricians and rheumatologists don't think that is the answer. The way I see it is "if it alleviates the pain, it is worth a try!"

    I will be praying for your little one. Children should be outside running, jumping and playing without constant day-to-day pain!!

    Dana
    www.weshallovercome1215.blogspot.com

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