Monday, March 5, 2012
Ethan Ethan Ethan... Genetic disorder???
Ethan had another antibody (IVIG) infusion today, he did so awesome. The poor guy had 2 IVs blow but the 3rd one stuck. We also met with Rheum today and have a whole new idea for a diagnosis.... Collagen Deficiency (http://en.wikipedia.org/wiki/Connective_tissue_disease). Yeah a whole new ball game which became absolutely terrifying once I started reading. Ok, so not all diseases associated with this are scary but the one that I thought fit Ethan was (http://www.ncbi.nlm.nih.gov/books/NBK1494/). Now I could be completely wrong and I should probably stop researching. We see Nephrology and Rheum again in a month. In the meantime they did the blood draw today for the DNA testing.
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Still keeping you guys in our prayers, no matter the diagnosis. But continued research doesn't usually ease the mind, it always seems to bring on more questions :). Keep up the faith and strength SuperMom!
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