Thank you so much for sharing the info about FJ with me.It has raised questions for me that I will be putting to his consultants in a couple of weeks at the next appt. We have been told that the DNA test is only available if we enter into clinical trials which we have done twice.Oscars DNA has been taken and stored and then the funding has been removed and so the test has never taken place. We have 4 sons and a daughter.All the children were scanned and had 24 hr wee collections taken and tested and we were told they were clear.However looking at the info on the site it would seemthat Oscar presented very early with symptoms.I wonder if its a possibility that the others could be harbouring it.I have never been DNA tested. Oscar is on a diuretic, antibiotic and potassium citrate to alter the pH of his wee.The stones are still growing but not so quickly. Can I ask did you have to pay for your DNA test? and what symptoms did FJ have initially to alert you to a problem? Oscar will need translants, probably more than one in his lifetime.We have been told that the crunch will be puberty. I think you are right,gut instinct is usually the best way to go if its your child.I think you have a sixth sense about it. On the outside Oscar looks totally normal except for the op scars which is good cos he doesnt get treated so differently.We live in Southampton which has very good facilities and a world class paediatric nephrology dept and staff,we are very lucky in that respect. Its so nice to talk to someone who is in the same boat,tho I wish we werent!We were told that there are only 4 children in the country with Dents,I wonder if FJ was one of them or is he a bit old to be called a child now?! Do keep in touch Val,and take care regards julie

Hi, Julie. How old is Oscar? My Frank-Mason had his DNA test done in the Washington DC area somewhere, I think, I wonder if you could have yours done there. Also, regarding your other children, I would say that if their pee tests are showing up clear, you wouldn't need to have them tested. My neph says that there's no reason to know if they have it, until symptoms start showing in the urine. It's good that you have a good medical facility to go to. We do, too, and that helps a lot! juulie!

Hi Julie & Juulie Its good to talk to you both. FJ had his DNA testing at the suggestion of Gt Ormond St Hospital - there was no charge, but they didn't seem keen to test my daughter to see if she's a carrier. As for intervention, a low salt diet was recommended & potassium citrate & bendroflumethiazide were suggested, but he didn't get on to those. The Consultant gave me the impression that it wasn't actually proven that they would make any difference, it was more of a possible help. He also said that FJ was one of 4 or 5 children they were treating with Dents at GOSH at the time. He's under adult care now. It sounds like your boys have had to go through a lot at a very young age - that must be really tough for all of you. At least FJ understands whats going on - downside of that is he can also refuse to co-operate with the medical experts if he chooses!! On a positive note, to the outside world he appears fine & is enjoying his job & social life (apart from just spending a week in hospital from an unassociated infection - what next??) Bye for now & take care. Val