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Any parents have experience with nephrocalcinosis? (Calcium in kidneys)

1 reply

TessieVanKendre · 30/04/2019 12:46

My 3 year old DS is due for renal ultrasound after me mentioning to his pediatrician about seeing a milky colour in his urine then it turns normal. He has chalky residue in his bed pants and underwear. Reading up on it, his symptoms fit with nephrocalcinosis. Anyone have experience with this? What happens?? What's the treatment? His doctors are vague, they are covering up what they picked up when he was a baby and failed to address it again until I mentioned it.

OP posts:
Are your children’s vaccines up to date?
VioletPickles · 30/04/2019 23:10

Me! My daughter was diagnosed with primary hyperoxaluria. By chance kidney stones and nephracalcinosis were picked up on a scan when she was 6 months. She was born at 25 weeks. So far she has had four operations to remove kidney stones and is scanned every 3 months. Her kidneys show considerable nephracalcinosis but as long as there are no new stones then they just monitor it. My daughter has a gastrostomy feeding tube into her tummy, and an overnight feeding pump purely for extra water to flush her kidneys constantly x

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