HI everyone! My name is Elizabeth. My daughter is awaiting an appt with Seattle Children's ENT to get a biopsy and scan of her nose. She has had severe rashes with purpura and extreme swelling and pain in her joints. She has been seen in ER twice before getting a diagnosis of HSP. However, upon her symptoms of blood in her nose and mucus this was not typical of HSP nor was continual bouts of headaches so I did some further reading into HSP and other vasculitis disorders and came across Wegeners Granulomatosis. This appeared to be more along the lines of what my daughter is dealing with. So I took her back to the dr and discussed these symptoms again with her Nepherologist who also seemed to think they needed to look into something else and not HSP but she didn't say specifically what. I already know what the what is since doing my research. She is on weekly kidney testing due to her diagnosis with HSP and having protein in her urine and High inflammation markers. I am wondering if anyone out there has had similar events and if there are any parents with young children dealing with this here?
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