Abby’s Advocates…

For anyone that knows me and my family, and for those that don’t, my daughter has Juvenile Rheumatoid Arthritis(JRA).  We have been battling this for quite some time now, even though she is only 5.  We are very involved with the Arthritic Foundation and are participating in the Arthritis Walk again this year.  Please visit our team’s page (http://bit.ly/wxnQxY) and join our walk team or make a team donation to help find a cure for Arthritis.

If you don’t know Abby already, this is her story: 

At the beginning of the summer of 2008, we noticed that Abby, almost 2 years old, 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 a lot 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 of Pauciarticular Juvenile Rheumatoid Arthritis (JRA) 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 Celebrex and Prevacid to counteract the side effects of an upset stomach.  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.

Her pain was unrelenting and the Rheumatologist switched her medications first to oral Methrotrexate then to weekly injections of the Methotrexate.

Currently it seems that the Methotrexate might be working.  Abby is now a 4 year old with a passion for cats and an uncanny ability to catch lizards.  Abby has participated in The Little Gym and is currently taking dance lessons from a member of the Jacksonville Jaguars Cheerleaders, The Roar.  Unfortunately, having JRA and a multitude of medications is the only lifestyle that Abby has known.  To look at her, you would never guess that she has such a debilitating disease.  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 every day with her beautiful smile.

Please support your local Arthritis Chapter.  Arthritis is a disease that has no known origin and really no cure.  This is not just an elderly disease, approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions … kids get arthritis too!

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