My oldest daughter was around 2 or 3 when we first found our pediatrician. She's now 16. Our pedi is so sweet, so kind, caring & compassionate. I have always felt that she truly looks out for us. When our rheumy blew us off the other day we made an appointment for this morning with our pedi. The rheumy had wanted us to go to her for a strep culture. I hate getting angry- I always feel like it's irrational even when I know it isn't, so it was wonderful to me that she got angry when Kevin told her the story of the past week. When he mentioned changing doctors, her response was "Let me call them for you. You shouldn't have to go through that." (Did I mention that I love her?) This lady is so cool that after my kids stop seeing her I would love to become friends, hang out together. She is also a fantastic doctor. So, that made me feel so much better that she was angry over the whole situation. She hit the nail on the head by asking Kevin why he didn't just order the culture since his office is in the hospital & we were right there!!! She doubts that Em has strep, but she ordered the culture & more labs to go with the it. Just a CBC, CMP & SED (Erythro Sediment Rate- that measures inflammation in the body). Had I known I would have asked her to throw in a couple more. I'd love to have her Rheumatoid Factor re-checked since I've heard that true RF means having a positive result twice, but also it would be good to re-test for Epstein-Barr. I found this article on a Facebook page simply called Dermatomyositis: http://www.facebook.com/#!/pages/Dermatomyositis/103112109729074 "
The cause is unknown, but it may result from either a viral infection or an autoimmune reaction. In the latter case it is a systemic autoimmune disease. Many people diagnosed with dermatomyositis were previously diagnosed with infectious mononucleosis and Epstein-Barr virus. Some cases of dermatomyositis actually "overlap" (are combined with) other autoimmune diseases such as: Sjögren's syndrome, lupus, scleroderma, or vasculitis. Because of the link between dermatomyositis and autoimmune disease, doctors and patients suspecting dermatomyositis may find it helpful to run an ANA - antinuclear antibody - test, which in cases of a lupus-like nature may be positive (usually from 1:160 to 1:640, with normal ranges at 1:40 and below)."
I have noticed that her fevers seem to only be upon waking and before going to bed. We're going to keep a closer eye on them to see if we can establish a pattern. I had asked our rheumy if it was possible that she could be just now showing signs of systemic disease in any category & he said no. Then again, he also got ticked off when I asked him wouldn't the scleroderma spread without treatment? Some days I feel like maybe I know too much, other days like I don't know enough, but some days it's a mixture. Yeah, he got all defensive with me about that question but I have read that damage cannot be reversed. That said, wouldn't it make sense to prevent damage? One would assume...
We should find out the lab results sometime tomorrow, and hopefully figure out what the heck is going on. She is feeling better today!!! She's still very pale and tired, still hurting a bit in her elbow but her knee is feeling better! I had gotten used to her walking so slowly & carefully again, but when I got home today she walked past me normally. I almost dropped my drink. Talk about exciting!!! She still has the fever, though, so no school. It should be interesting to see what tomorrow holds. I'll keep ya'll posted!
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