tag:blogger.com,1999:blog-7478885332727102848.post8268249844982005246..comments2024-02-22T10:59:34.564-05:00Comments on Always Home and Uncool.: To Cure Juvenile Myositis, You Must First Know It ExistsKevin McKeeverhttp://www.blogger.com/profile/10673014424525900380noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-7478885332727102848.post-41596869526608223252014-05-14T15:12:43.032-04:002014-05-14T15:12:43.032-04:00My son has been complaining of pain in his back an...My son has been complaining of pain in his back and legs. He has difficulties of keeping up with the other kids, and finds excuses to get the others to play something less physical, such as video games or play with his little hot wheels cars. I have lupus, and the rash I have on my face begins on my cheeks and moves up the bridge of my nose and settles above my eyebrows. Although his doesn't have the purplish tent, it does have the same pattern along with the small white bumps. His knees are often swollen and tender. his hands are constantly in a fist, and he can't make them move correctly to even tie his shoes. He has pain in his jaw and neck that makes it difficult to chew and swallow food. However, he doesn't have the rash on his knuckles, nor other symptoms I have read about. He has 8 different doctors peds, ortho, cardio, allergist, ect. They all agree on three things. (1) something is going on and (2) they don't know what it is (3) It maybe Juvenile Myositis. We are waiting to get an appointment with a rheumatologist right now. I would like some more information. please e-mail me carroll.kathrine@yahoo.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7478885332727102848.post-8662587815785399212010-08-12T00:31:26.390-04:002010-08-12T00:31:26.390-04:00My son has Mastocytosis. Not the same, but also a ...My son has Mastocytosis. Not the same, but also a rare 'orphan' disease (i.e. no one can tell us the cause) that impacts the autoimmune system and minfests iteslf on the skin. He's 'lucky'...his case is very mild and the interruptions to his daily life minimal. But it's frustrating how little doctors know and how little can be done. Sending love to your little girl, and voting for your Pepsi Refresh idea.<br /><br />PS: If so inclined you can read about my son's disease on my blog: http://theazkahles.blogspot.com/2009/04/mastocytosis.htmlMuffin Cakehttps://www.blogger.com/profile/15921638826104681263noreply@blogger.comtag:blogger.com,1999:blog-7478885332727102848.post-2023777599278211462010-02-22T14:34:16.775-05:002010-02-22T14:34:16.775-05:00Thanks Kevin for participating in Blog4Rare. Hope ...Thanks Kevin for participating in Blog4Rare. Hope to chat in the next week or so!catherine (fairchild) calhounhttps://www.blogger.com/profile/08956302792185482511noreply@blogger.com