How many years have passed from the first symptom of Dent to getting the diagnosis ?

I think that it was about 10 years for me. I passed a kidney stone when I was 2 - 3 and after years of different diagnosis was told at age 13 that I had Dent's. Jay

Thanks Jay. Did you go onour facebook page and answer the poll? Lada

I have now. Thanks. - Jay

Hi, This is Jay's mom adding a few details. At about a year and a half, Jay passed a kidney stone. Doc was not concerned. Then at age 4, protein and blood showed up in urine, with a misdiagnosis of medullary sponge kidney disease. We proceeded with this misdiagnosis until Jay was about 13, at which time he suffered a drop in kidney function (which apparently should not occur with Medullary Sponge kidneys). Genetic testing reveals x-linked nephrolithiasis. Jay just turned 29 today! Happy b-day, Jay-bird!.

Happy Birthday, Jay! My son Daniel (20) was diagnosed at 3 years old, the first time he was able to have a simple urine dipstick test done simply because he was finally out of diapers. Because I had an amnio done for his sister's birth and the genetecist requested it to the hospital where my father died (32 years later!), I had (and still have) a detailed copy of my father's medical diary during his last months at the hospital in Boston. So I took this with me to Daniel's first visit with the pediatric nephrologist. He immediately said it was hereditary and x-linked. As far as I know, Daniel has never had a kidney stone, or maybe once early teens he mentioned some pain one evening, but not sure because next day he was OK. Jay, I have been meaning to ask you: Have you continued your meatless, healthier diet? Is it working? Has your creatinine continued to be on the lower side?

My 26 year old son was first diagnosed with a generic form of kidney disease at 6 months of age. He had an unexplained fever, and his pediatrician did a urine test, and she found trace amounts of blood and and blood in his urine. We were immediately connected to a nephrologist at Children's Hospital in Boston, and he still sees one there twice a year. They didn't have a specific diagnosis. At 13 he had a DNA test and it showed that he had Dents Disease, and it also confirmed my father's diagnosis.