I signed up for this forum about six months ago, and now I see there's another member! Let's each tell a little about ourselves, and hope that we show up on google and attract other members. My son, Frank-Mason, is 10 now and we are just in the process of realizing he has Dent's. He showed signs of FSGS at age 5, and usually in a kid that young, this is a symptom of Nephrotic Syndrome, although Mason never has had a nephrotic episode. But gradually over the last 5 years, we've come to realize that NS wasn't really a good diagnosis. Then about 9 months ago, I found an article on the web about FSGS being a symptom of Dent's in children. I instantly jumped on this info and now we have a mostly positive genetic result, so we are going with this diagnosis. Not much further along than that. Anyone else?

Hi there,I have seen your info about your son and have today posted info on the community home page.It would be wonderful to talk with you. In the uk there is nowhere that tests for dents using DNA. We are going with the diagnosis as Oscar has so many of the classic symptoms. Its very frustrating that no one seems to know how to really definitively treat Dents. We are lucky that the city we live in has a specialist childrens renal unit and childrens dialysis, as Oscar will probably need it one day. My name is Julie and I would be thrilled to hear from you. regards ju

Hi again, I'm posting another message in the hope that one of you guys will see Dents on the recently updated community section and post back to me!! regards julie

Hello Thought it may be helpful to share the experience of my 17 yr old son, FJ, even tho I realise everyone is individual, so many things may not be relevant. FJ was diagnosed age 10 with Dents, and monitored as an outpatient at Great Ormond St Hospital, where the diagnosis was confirmed following DNA testing on him and me (I am the carrier) a couple of years ago - I think the actual testing is carried out in Germany. Absolutely no problems at all until last summer, when following a throat infection & severe vomiting bug he became dehydrated & went into acute kidney failure. He had also been taking Ibuprofen. These 2 things have left him with further irreversible kidney damage. I mention this, as we had not been aware that people with Dents are at a higher risk than normal of kidney damage when becoming 'dry' & that they shouldnt have Ibuprofen at all. He is being very closely monitored now; is on steroids (there was inflammation) & ACE Inhibitors (which have reduced the protein in the urine/blood & therefore are protecting the kidneys). Even tho his creatinine stays around 300, the consultant says this should be ok - he will only need a transplant if it gets worse. I think that if he hadn't had the problems last summer, he would have been fine for many years - no proof of course, just a gut feeling! Hope this is of some help. Regards. Val.

Hi, Val, and Julie! You're both in the UK? I'm in Oregon in the US. I'm pleased to see both of you here, and hope we'll stay in touch, although I don't check the computer daily. I'll probably only sign in once a week or so. Frank-Mason is enalapril and cozaar which are both high blood pressure meds. He was on steroids for the FSGS, but is finally off, thank goodness. He had lots of bad side effects, and also had a very hard time getting off of it, since he developed adrenal insufficiency while taking it. Wow, Val, you've been through the ringer, haven't you? That is really tough news for a 17 yo and his mom! My Frank-Mason has an unrelated condition called Cyclical Vomiting Syndrome, and we've had a number of problems with the interaction of that and the kidneys. Knowing what you've gone through will make me even more vigilant. Are either of your sons on other drugs for Dents such as thiazide, or amiloride, or tried a citrate-enhanced diet? Just curious if you've seen success, or had any side effects, since we'll be looking into those.