*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!
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Saturday, May 29, 2010
Scary pain
I'm not sure which issue it's from but tonight Emily scared me for a few minutes. It's hard to get an accurate description of pain from an 8 yr old that's always in pain. She told me tonight that she had a "beepy pain" in her chest, on her left side. The pain was right over her heart. Thank you, God... it only lasted a minute before moving to her leg, and then back to her chest but in a different area. I'm not good at counting beats but her heart didn't seem to be at an unhealthy pace. It just scared me. I have no clue what that would be from. She's not systemic JRA, so probably not from that. She's linear (skin involved) scleroderma. I don't think Raynaud's would do that. Her doctor mentioned Mixed Connective Tissue Disorder (MCTD). I haven't had a chance to read anything new specifically on that yet, but I know that all of the other issues are related to MCTD's. I've been slacking on my researching this week just because I feel a bit overwhelmed as it is. I'll pick it back up in a few days, but at the moment I'm still recovering from that last doctor's appointment. I just wanted to share that with you because it's fairly rare that I get scared in such a way. Input? Ideas? Suggestions? Please feel free!!!
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