My daughters friend was just diagnosed with a rare autoimmune disorder called juvenile dermatomysitis. It causes a red rash on the cheeks and eyelids and muscle weakness of the large muscles. Apparently it is treated with many of the same drugs that alot of us are on. This little girl is in 3rd grade and just such a sweet kid. It is really sad to see her going through all of this. She had bloodwork to confirm the ds. and a muscle biopsy on Monday to see how far it is progressed. They will get their results tomorrow. She is going to be on weekly IV infusions for at least 4 weeks to start. I know many of you have auto-immune disorders in your families and wondered if any of you had seen or heard of this before. Also, if you could keep this little girl and her nice family in your thoughts---maybe we can get some good vibes to go out their way.
I just looked this disease up and this can be really serious. From the sound of the IV usage it possibly might be. if you have her in your care some of the time it would be worth your while to read about this and do speak with the parents as to her stage of things. I would hate to not be alerted of things with a child in my care and have some knowledge of their condition, and as serious as this sounds, GOD forbid anything happen. I would not be able to live with the thought. She will be in my prayers tonight and how ever long they are needed. Here is the link: http://www.emedicine.com/med/topic2608.htm this site is a diary by a little girl's parents and follows a couple of years of her life. It is quite interesting reading and has a good ending as she goes into remission. It might help with a bit of insight as to what your daughters friend and family is coping with and how she can be helped Just a thought Hi Crunchy, this was my original diagnosis between the ages of 13-19 (I was rediagnosed when I switched to an adult rheumy). My symptoms were - rash on face and knuckles, fatigue, lethargy, weight loss, muscle pain/weakness/wastage, difficulty breathing, etc... I was initially put on a huuuge dose of prednisone for a year, then Mtx and the Iv Immunoglobulin therapy which involved going into hospital for 3 days every four weeks. I did feel better with this treatment but developed joint symptoms after the Pred burst which is maybe why the next RD questioned the dx, but for six years this is what I was treated for. It is very similar to RA, it just has a few different symptoms/markers, particularly the muscle symptoms (which I still get btw). In fact a lot of these rheumatological Auto-immune diseases overlap which is why diagnosis is so difficult. The most important thing is to find the right drugs to help her. I'm sorry she's going through this though, the early days (especially at that age) are always the hardest. Send our love, Moonie x
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