It feels like no improvement is being made in Bella with the change in medicine. I know it often takes time but it stinks to watch my daughter complain of pain and discomfort so much. I hate seeing her so tired and cranky. Those moments when I see her giggling and laughing with her friends make me feel like things are changing.....but at the end of the day we still get the same complaints from Bella (now with a couple new issues). Anyone that has a child with an auto immune disease or any type of chronic illness knows how exhausting it is for their child and the entire family. I just wish we could run away from it and have a break, even for one day. All I ask for is one day where I/we don't worry, have to give medicine, research, and fight with the insurance. I feel like my close friends now are the nurses at Hershey Medical Center because I talk to them on a daily basis.....ha ha
This week Bella has a few new complaints to add to the list, because we don't have enough going on already! Sunday night she started to complain of chest pains, we thought it must be acid reflux(common side effect of a couple of her meds). We gave her tums and sent her to bed. The next morning same complaint. All along she has been complaining of stomach aches/pains (she always had stomach issues). After 4 days of the complaint I contacted the doctor and they have actually decided to make some more changes. First, the doctor is putting in a call to the Gastro doctors at Hershey trying to get Bella in to their office sooner than later because she suspects that Bella has Chrone's Disease or Inflammatory Bowel Disease. Which both of these are common with children that have JA. They will be doing a full panel of tests ranging from blood work to colonoscopy. It is very common for children with JA to get overlapping auto immune diseases, which makes it quite tricky for the doctors. Many of them require the same medicines and treatments, but not always.
So they are taking her off of the Naproxyn for now, just in case it is causing stomach upset. Which now drops us down to 2 pills a day, pretty exciting. BUT, Monday we are to call back and discuss putting her on Prednisone steroids to help with some of the issues she is having. The doctor thinks she may also have Costochondritis. Costochondritis is inflammation of the cartilage that attaches the ribs to the breast bone. Also, another condition common in patients with JA. I never knew there were so many things that could get inflamed in one person's body.
The doctor wants to make one change at a time to see the outcome of each change individually.
She did tell me that Bella should be seeing improvement with the Methotrexate already and feels that she is getting worse in symptoms so she told me the next option would be the Biologic drugs. Which they give in addition to the Methotrexate and is also an injection or infusion. The doctor said her disease is progressing ever with the treatments and wants to move fast with tests.
I am very happy that the doctor is moving quickly to help Bella and find the right treatments to improve her quality of life.
Most people would never notice a change in Bella at school or activities because she tries to hide it from everyone. Bella hates having JA and tells me she does not want to talk about it with anyone. I asked her why she tells everyone else that she feels good all the time when they ask how she is feeling and she told me that is because she doesn't want to explain what is wrong to everyone all the time. She doesn't want people to think she is weird. Kinda breaks my heart that she feels the need to cover up just to feel normal.
So, hopefully by the end of day today we will have our next round of appointments set up and we can move forward with helping to reduce her discomfort.
I have to say that I have never been more happy with a doctor and staff ever. Bella's Rheumatoid doctor and her nurses are amazing. They have helped us so much and call after hours to help us and have never doubted a pain or concern. Love, love, love her doctor/nurses!!!
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