Our 8 year old daughter Devon was recently diagnosed with aHUS on March 5, 2012. She spent 5 weeks at CHOC hospital in Orange County CA. It was an incredibly difficult time as you all could imagine. We feel very blessed that she was diagnosed within the first 24 hour and were/are thrilled with the nephrology and hematology teams. We are still waiting for blood test results to come back from Iowa. They originally told us it would take 6-8 weeks now they are telling us 3-4 months. Does it always take this long?
She is currently having Soliris treatments every other Friday.
Our daughter is doing very well. The big problem she is still having is stomach aches. She has had them from the very beginning...even the two weeks prior to being diagnosed. We have had X-rays, sonograms, told all the doctors at CHOC, brought her to see her pediatrician, and now seeing a naturopathic doctor. Has anyone else had this problem? I would appreciate any feed back.