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Dents Disease

mgordon Message
27 Jan 2010, 02:44 PM

Hi, My son was originally diagnosed with FSGS and after not responding to the medication our Nephrologist changed his diagnosis to Dents. The entire family sent blood to Yale University where they are doing research on Dents and it came back positive as Dents. I (mother) am a carrier and my daughter is a carrier. My brother, who has not been tested yet, is at end stage kidney disease (19% function) and there is a very good chance he has Dents disease as well. My son had many kidney stones in both kidneys, he is 8 years old and we just had an Eswal performed to break up the largest kidney stone. So far the medicine he is on is working: Zemplar & Hydrocholrothyiazide. He is the 2nd case his Dr. has seen in his career. I've heard that many FSGS patients are often misdiagnosed as the symptoms are similar. I am trying to gather as much information as I can about this disease, so any feed back/comments would be welcome. Thank you, Mary
juuliedowns Message
27 Jan 2010, 06:05 PM

Hi, Mary! My son was also diagnosed with primary FSGS, and all the meds didn't "work". I finally found an article on the internet about how asymptomatic proteinuria can be an indication of Dent's, and we took it from there. We're just starting him on thiazides, although we haven't had a lot of kidney stones. He seems to have a different mutation, one that has other issues. Where are you located? We are in Oregon, USA. We see our local neph here, who is very good, but we have also been seen once at the Mayo clinic, and the Dr. we saw there, Dr. Carla Monico, will follow Mason, too. I encourage you to contact her, since I found her to be very helpful and interesting. I expect you would too. juulie downs
mgordon Message
29 Jan 2010, 01:32 AM

Hi Juulie, We have a wonderful Pediatric Nephrologist, Dr. Robert Weiss. He is in Westchester, NY at Maria Fareri's Childrens Hospital. We live in Dutchess Cty, NY. What are some of the other symptoms that your son has? How was he first diagnosed with FSGS? Aidan was diagnosed from a routine physical which involved a urine specimen and a Pediatrician who just wouldn't let go (thank GOD!). A friend had mentioned the Mayo clinic to us, but we haven't really looked into it. If possible, could you forward Dr. Monico's contact info? Thank you for responding! Mary