*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Wednesday, September 1, 2010
This morning I called the doctor voicing my concerns about the beginning of the flare. Today was another rough day for Emily; she's having trouble running and keeping up, & she needed frequent breaks during her physical therapy tonight. I know how incredibly busy her rheumatologist is. I don't expect callbacks often because of this. I was completely floored today when they called me back this afternoon to ask if we could come in tomorrow! I am sure that her meds need to be changed. I know that the Orencia that he wants to move her to takes about 3 months to kick in, but can be as long as 6 months. I know that she is in for a VERY long winter if we don't get something going fast since she isn't on anything for her Raynaud's. I feel like we're racing against the clock with these meds at the moment. I have a ton of questions for once. Mostly things like: has she had an anti-CPP test done so that we could possibly help out in the Emory study? What is CARRA group doing in our area? Could the Lupus Pernio that she has developed in the past maybe be because she has Lupus? I wanted to talk to them again about pointing newly diagnosed families to the Facebook pages if they can't give my contact info. So many things to cover! I'll post ASAP tomorrow after her visit! Wish us luck!
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