7 year old girl
Looking for advice/experiences from parents whose children have dealt with unexplained blood in their urine, IgA nephropathy, or something similar.
My daughter is 7. Here’s the short version of what we’ve been dealing with:
December 2023: Urinalysis was completely negative for blood and protein, and kidney function was normal. This was an ER visit for another reason.
June 6, 2026: visible blood in urine. Went to ER. Urinalysis showed 3+ blood and >182 RBC/hpf. Treated for a suspected UTI, but the urine culture came back with no growth.
June 15: still visible blood so back to another ER. This was the only time slight protein showed up in her urine. No blood on that urine test. Ultrasound suggested a few tiny (around 2 mm) non-obstructing kidney stones.
June 30: 24-hour urine showed very low urine volume (490 mL) and elevated CaOx saturation.
July 9: CT was completely normal with no stones, making us question whether stones were actually the cause of the bleeding.
The blood continued to come and go. By August, nephrology was considering things like IgA nephropathy or Alport syndrome, and genetic testing was ordered. For several weeks afterward, her urine was completely negative for both blood and protein, including on our home dipsticks. Genetic testing showed Alport negative.
On and off blood on home dipsticks for a couple months and then clear (knock on wood) for the past month.
September: She had a failed (not good images) MR urogram as part of the continued workup. Her eGFR has gone from around 92 to 86.8. She has also had some low blood pressure readings, although many have been normal/low-normal.
We just completed another 24-hour urine collection and are still trying to figure out what is causing this.
I’m especially curious about IgA nephropathy because of how the blood can appear and then completely disappear. We would also really like to avoid a kidney biopsy unless it’s truly necessary.
If your child has had IgA, or recurrent unexplained hematuria, I’d love to hear your experience. Did the blood disappear between episodes? Did your child have blood without protein? How were they ultimately diagnosed, and did they need a biopsy?
Not looking for a diagnosis — just hoping to connect with parents who have been through something similar and learn what questions we should be asking. ❤️
I think this length is much more likely to get read while still including the >182 RBC/hpf → suspected stones → clean CT → intermittent blood → IgA/Alport workup sequence that matters most. Please send any and all advice my way. Thanks so much.