A week from today we have our next appointment with Bella's Rheumatologist, where we will discuss the next plan of action for Bella. Since the first step hasn't helped Bella, they will move us on to the next step. The doctor had given us a packet of information during her first visit that outlined what to expect and the steps each newly diagnosed patient takes. We are all nervous to find out what exact step will be taken and which tests we will do next. Will she get pills or injections....more therapy, less therapy? During the last phone conversation with the doctor's nurse they pointed out that they wanted to x-ray her back because of the increased pain levels. They have already taken x-rays of her ankles and upper legs. So, I assume they will want to do comparison x-rays to check for changes. Bella has added more complaints about her wrist and fingers hurting this week and I assume the doctor will look into that as well.
I have researched a lot about the HLA-B27 that she tested positive for and have found that it is an indicator for another type of arthritis and other immune diseases. The other type is called Ankylosing Spondylitis. Which our doctor briefly mentioned at our first appointment but decided to go with an umbrella diagnosis for her until more tests were completed and we saw how she progressed with her disease. I like this route because it gives them time to fully evaluate her and make sure that we don't jump to conclusions prematurely.
What is Ankylosing Spondylitis?
Juvenile ankylosing spondylitis is a type of arthritis that affects the spine and the places where the muscles, tendons, and ligaments attach to bone. The disease causes inflammation of the spine and big joints, causing stiffness and pain. The disease can cause erosion at the joint between the spine and the hip bone (the sacroiliac joint), and the formation of bony bridges between vertebrae in the spine, fusing those bones. Also the bones in the chest can fuse.
Some of the symptoms below we have seen in Bella but others not at all. That's why they take their time in diagnosing because so many of the different type of arthritis overlap symptoms.
Bella did have a bit of a heart break this week whens he found out that basketball try-outs were Tuesday night and I did not sign her up. But Dan and I decided that it is best to not sign her up because she is having a lot of pain doing cheerleading. Basketball is much more physically demanding than cheerleading. She is already so disappointed that she can't make it through an entire game cheering. I remember last basketball season where Bella would come home every night after practice miserable and crying because the pain was too much. I just couldn't put her through it again. Dan and I made the decision without talking to the doctor because we think it is best for now. The whole idea is to reduce and prevent joint damage and to keep her from having surgeries. Though Bella thinks I am being the meanest mom in the world by not letting her play one of her favorite sports, I am doing it to help the future of her health. I told her if she goes into remission by next season, I will sign her up to play. Of course that was not good enough. Hearing her friends talk about trying out broke her heart and I could see the disappointment in her eyes.
Taking away things that my daughter loves to do is so hard.............
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