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The Diagnosis just keep coming
My twins, my husband and myself just got back from the NIH in Bethesda, Maryland middle of last week. We flew there to participate in a twin/sib discordant study that Dr. Lisa Rider is doing for Juvenile Dermatamyostitis patients. Shelby's symptoms had improved so much since starting the prednisone back in March. As we started weaning him off though the symptoms began to come back with a vengeance. The day before yesterday I noticed his hands had turned blue again. He's back in a wheelchair part of the time. The headaches are awful. Yesterday was his first day of school. Instead of complying with his IEP which clearly states, no unnecessary walking; they had him going up and down stairs! The middle school is on a hill, he's not supposed to walk down to the bottom for lunch or anything else. They had him going up and down the hill! Needless to say, by the time I picked him up he was exhausted. He crawled into my bed at 4 p.m. and didn't wake up all night. I really struggle with anger at this school district. He's also been diagnosed with Lupus and Fibromyalgia. I feel as if I'm at the bottom of a pit and it's all coming down on me.
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© 2012 Created by Christina Shaver.
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