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Showing results for tags 'juvenile scleroderma'.
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Hi Everyone, After 1 1/2 years of Raynaud's as well as dark and light pigment changes on her back and legs, and being followed by rheumatology for 1 year with a diagnosis of juvenile idiopathic arthritis; my 12 (almost 13) year old daughter was diagnosed with juvenile scleroderma today. The diagnosis is not a shock to me. I had suspected it all along because of her symptoms, etc. Her doctor had said "possible scleroderma", but usually seemed as though it was not likely. Today he said "this was not the news I wanted to give you, but it has become clear that she does have scleroderma". If I had heard the news at any of the earlier appointments I think I would have been prepared, but today...I just wasn't. From all that I have read, and the best I can figure out, juvenile scleroderma does not normally have as severe of an outcome as adult onset. I asked her doctor about what "type" she has because her skin color changes are on her back and legs, and today the induration that he and the nurse practitioner noticed were on both lower legs from the knees down to the toes. Again, from what I have read...she would fit the category of "diffuse systemic". Her doctor did agree with the "diffuse" but said that kids don't normally have "systemic". I know from reading the forum guidelines that no one can give "medical advice" but I am really confused about the classifications. I also took her at the onset of her symptoms over a year ago to a pulmonologist, gastroenterologist, and cardiologist. She did (and still does) poor on her lung function tests, although the DLCO was ok. So right now she has the diagnosis of asthma. Her GI did a biopsy that showed inflamation of her stomach and small intestines and she was put on a med to help with that. Her echo at cardiology was normal. How do I know when to be concerned about lungs and GI possibly being part of scleroderma? Does the fact that her skin areas that are affected started on her trunk and is now on both lower legs mean anything when it comes to determining what "type" of scleroderma she has? Oh, and she was also diagnosed today with scoliosis. I didn't even think about it until after we left, but I am wondering if it could be related to the large area of scleroderma on her trunk...even though the skin is not very tight yet, could it be preventing her back from growing correctly during these fast growth spurts? Sorry so much - a lot on my mind tonight.