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Raecheal

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About Raecheal

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  1. Hello everyone, I am a mother of one lovely little girl who is five and who has either linear or diffuse morphea/scleroderma according to her doctors. She too has acid reflux and gastro problems she fluctuates between constipation and diarrhea. I am now finding from reading here and from my own experience that a doctor who specializes in this disease is needed because none of these tests have been done on my girl. They only have looked at her leg and other spots on her body (she has spot all the way up to her chest). They don't comment or hear me when I tell them of the pain in her back chest abdomen...and the gastro doctor seems to be attributing the problems to my daughter being overweight. In my heart I feel it is all related and reading stories here my assumption is being more confirmed. I have followed the link by state and have called several different doctors from the list. I am determined to find a specialist that KNOWS something about this disease!! My daughter is being treated with methotrexate a chemo therapy drug to suppress her immune system. Anyone ever have this treatment? Know anything about it? Have success with it? Her other symptoms are being treated separately with various medications. I am worried sick. I am sending her to school even though she is crying everyday to stay home. I don't know if I am doing the right thing because her immune system is suppressed and because more than one post here mentions stress as a factor to flare ups. I am desperate HELP US!!!!! Please, Raecheal
  2. Hi, My name is Raecheal and I am here because my five year old daughter has been diagnosed with scleroderma/morphea. She has had two different diagnoses one of linear morphea and one of diffuse. I am currently looking for someone who knows SOMETHING about this disease. It seems that no one knows much about it and that's why I hit on the post about John Hopkins... I have called them in regards to my girl and am anxiously awaiting their reply. My daughter has acid reflux goes between bouts of constipation and diarrhea ... she has pain in her chest and back sometimes on her side. The doctors at Children's memorial seem to relate all of those things to her being over weight... I have thought about this and sat with it and it does not seem right to me I think all of theses things are scleroderma related... the more I read the more I feel that is so. I am begging anyone who knows about this especially from a pediatric point of view to share with me and everyone . I feel I have only touched the tip of the iceberg with researching this .. and want to hear directly from people who have experienced this and understand . Thank you for your time. And your story, Hopeful Mom
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