My son Ben was Dx with Henoch Scholien Purpura (HSP) when he was three years old; in October of 1998. Since that time and he’s been diagnosed with chronic constipation seemingly unrelated to HSP in addition to every strange autoimmune related disease process known to mankind,like the Christmas tree rash, hand-foot and mouth disease, scarlet fever, roseola, fifth disease and pink eye to name a few. The chronic constipation was blamed on diet, lack of exercise, and not drinking enough water by all standards. When I would mention the HSP episode with three outbreaks within two months I was assured it was unrelated. Years ago in 2006 my son complained of flank pain with pain during urination. When I brought him to the pediatrician's office it was suggested that my son’s fecal impaction was impinging his bladder causing hematuria and keeping him on his Miralax was tantamount to keeping him healthy. February this year Dx with hydronephrosis; cleared by the urologist he was referred to nephrology. The nephrologists take a look at his records – i.e. HSP - and the Dx is IGAN as of April 2009 – follow up is scheduled for six months. I am full of panic and fear and can breathe again only after comforting research. He was sent to rheumatology to access autoimmune causes and check cascade complexes in an attempt to determine disease process. Serum and urine have us back to the nephrologists early. His protein is at 242 mg/L (urine chem.) range is 0-8mg/DL; Calcium 2.2 mM/L (serum) range is 8.9-10.4 mg/dl; and of course hematuria is present.

Can anybody reassure me that this is just part and parcel of the very slow progression of IGAN? Are flare ups normal and will it subside? Has anyone had their Alpha 1 & 2 globulin checked to determine the difference between inflammatory disease and kidney progression – if so was the test indicative and foretold the progression of your disease?