Hi,
My son has had intermittent gross hematuria for a year. This is his only symptom. We have gone through 24 hour urines, blood tests, US, CTs, kidney biopsy and cystoscopy and still no other findings. He is a 7 year old boy. He also has selective IGA deficiency. Otherwise healthy. The docs say he is a mystery. Any one else experience this?
has he had a colonoscopy or upper esophageal scope ?
He had a cystoscopy but not an upper esophageal scope
No he does not have blood in stool only urine.
that is puzzling...blood has to be comming from somewhere...thats why i was thinking an upper espahageal scope may show a bleed...i hope they figure it out...keep us posted
Darciwagner , Hello, I reckon your son already got a diagnosis (hopefully). I was wondering if you could let's us know how is your son now...we are having exactly the same problem with our daughter (8 years old) for more than a year... and apart from the hematuria, she is a very healthy girl, lots of energy and doesn't have any further symptoms. So any help or guidance will be greatly appreciated!!
Hi! We went to Boston Children's Hospital and they diagnosed him with a UPJ obsturction and Hydronephrosis. About 6 weeks ago he had laproscopic pyeloplasty surgery. He had abnormal cells at the UPJ they were inflamed with edema. They removed it and put in a stent. He had the stent removed about 2 weeks ago. We won't know if it helped for a couple months once the swelling goes down from surgery. The doctor said he can't promise this will fix it because his case is not typical they way he presented. Just keep pushing! My hospital wasn't wanting to do anything and then we made the trip to Boston and they were awesome. We had procedure done in our town (Columbus, ohio) due to COVID and now they are serious about following him.
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