e-mail Brianna
Hi, My name is Jona and I am mother to Brianna, a very sweet and loving little angel girl. Brianna is my world, along with my two other children. Brianna was diagnosed with Polyarticular JRA at about 10 months old but had been suffering from this since birth. After several doctor visits, we still got the same diagnosis of "colic". Finally, at Briannas' 9 month check-up, the doctor noticed that Brianna had something more than just "colic". He sent us to the hospital to get a lot of tests and x-rays. All the results were negative except that she had tissue swelling.
Briannas' regular Pediatrician sent her to a doctor at a medical center in Lexington,Ky. The doctor there said that Brianna probably had a disease called Juvenile Rheumatoid Arthritis. Well , we had never even heard of this disease and knew nothing about it and we were very emotional. They prescribed her Naproxen and an anti-biotic. They said they were going to send us to another doctor, and that he dealt with kids like Brianna all the time;He was a Pediatric Rheumatologist at Shriners Hospital for Children. We had the appointment within 2 days and went there and it was just beautiful inside the hospital, so much beautiful stuff, A lot of children and a very nice elderly lady that was playing a harmonica to all the children. The elderly lady made Brianna feel so much better by playing the harmonica to her because Brianna was very scared and so were we.
We went in and saw the Doctor and nurse and they were absolutely amazing; So very nice and caring. After the Doctor finished examining Brianna he told us that he was almost certain that she had polyarticular JRA. We were in shock again and very scared and didn't know how to feel; very mixed emotions. The nurse gave us some informative booklets on her disease and a medicine called methotrexate. The doctor prescribed Brianna Methotrexate and kept her on the naproxen. A couple of months later she was prescribed prednisone, which is another scary drug and she was also fitted for wrist and leg splints to be worn at night. Her legs were in a bent fixed position and they also taught us how to do physical therapy on Brianna to help with her legs and ankles.
My baby suffered so bad when she was an infant, everything from crying constantly to not letting anyone hold her and nothing would stop her crying. It was such a terrible feeling to see her crying like that and not being able to do anything about it. And now when I look back , it makes me hurt even worse to know that my baby was suffering with a very painful and destructive disease at that time. It's just so hard to deal with the emotions that come with your child having a painful, chronic, destructive and disabling disease. And It's terribly hard to even think about what Brianna must be really feeling.
She is so very strong and courageous and I don't think that I could ever be as strong as Brianna has been.
Brianna never crawled but instead she would scoot on her bottom to get where she wanted to go. She didn't walk until she was around 18 months old and that was the most joyous day! Another joyous day was when Brianna started to peddle her tricycle! These things, some people would think nothing about but when you have a child with an illness, such as Arthritis, then you really realize how much you appreciate God and all that he does, and you are so happy to see these little things in chronically ill children.
Brianna has been on Enbrel since she was around 19 months old and takes 2 shots of that per week , naproxen twice daily, 4 tablets of methotrexate per week and prednisone once per day. The medicines seem to be helping her and I hope that it continues to help more and more.
Rheumatoid Arthritis runs in both ,my family, and Briannas' dads' family as well. I have been diagnosed with Fibromyalgia, spinal stenosis, TMJ disorder and I also have a bulging disk, but it is all very mild.
Brianna is so wonderful and sweet and she is gods gift to us and we love her so very much that words couldn't describe. Thank You for reading this and if you would like to come and see Briannas' web-page that I have made for her you can go to http://geocities.com/brianna2lovely/index.html also I have created a group to learn more about Briannas' disease and to help me cope and help others as well, if you would like to see it or join I would be very happy to see you there , it is a group for any type of arthritis and anyone can join, you can go to http://groups.yahoo.com/grup/jragroup Thanks again for listening to our story.
Sincerely, Jona and Brianna
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