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My 2 sons were both diagnosed

sissiedr Message
8 Apr 2011, 02:02 AM

I dont know where to really begin with this post. Both my sons, Chase age 7 and Cameron age 5 were diagnosed last month with Dents. We got the genetic test results back yesterday and it confirmed my worst fear POSTIVE. We have had some many test ran in the past 6 months i almost feel like my kids have turned into lab rats. This all started from a back ache which lead us to be amitted into the ER and then transfered to OU Childrens Hospital. at first they thought he had kidney stones but then realized it was Nephrocalosnois. The doctors knew it had to have stemed from something more major and started doing all kinds of test. there were signs early on but i never caught on to them, he started wetting the bed @ 3 and i thought due to my divorce, he is always thirsty and craved water i thought it was normal cause is he a boy who always plays hard, and then his urine is foamy. Well i live in a house with my husband and 2 sons so i just figured all mens urine was foamy. We just got done doing a bone dentisty and bone age test because both boys a very small for their age.Chase was in the 98% when he was born and is now in the low 30's and cameron is less than 10% on the growth chart. Growth hormones have been discussed. Currently they are both taking Hydrochlorothiazide and Cytra-K for this. If anyone has any info i would love to hear from you.
bleujeanne Message
12 Apr 2011, 11:34 AM

sissiedr, before my son was diagnosed with Dents 13 years ago, before genetic testing was available, we were trying to find a similarities to my father's unnamed kidney disease in the 1960-70's. I mentioned to my mother that my son had foamy pee, and she told me that my father did too. Before that I also thought that all men did. Now we know that my father had Dents too. - Jeanne
minu Message
13 Apr 2011, 11:09 PM

I am so sorry to hear that both your boys have been diagnosed. If this helps, although I believe there are different degrees of Dent's disease, my son, who is now 19, and diagnosed at 3, had a wonderful childhood (and is still having a great and normal time at university it seems), except probably for his mom stressing about him taking too much sodium in his diet, and having to go to the doctor more frequently than his friends. He also takes hydrochl. and K-Citra. He is now an active, bright young man (a little absent minded and disorganized but I don't know if it is his age or the disease). He hardly grew around ages 10 to 12, and therefore took growth hormone from ages 12 to 18, and only stopped because he's away from home now. The hormones must have worked because, even though we are all short at home (my husband, his 2 younger sisters and myself) he is now the tallest at 5 ft. 9. My husband is 5 ft 7 and I am 5 ft. So, taking meds, growth hormones, doctors' appointments will be a part of your life, but, at least I try to think the positive is that nowadays there is dialysis and transplants, whereas (the same as bluejeanne's family) when my dad died, the doctors (Harvard related) did not know what it was and that it was hereditary and also simply told my mother it was a terminal disease. My only advice from my own experience is not to stress too much if you miss one dose of meds or hormones, or if they eat unhealthy. Overstressing doesn't solve anything; just get back on track. And enjoy your boys... as the old cliché says: they grow up so quickly! And let us just hope that a cure will be found for Dent's in the near future.
juuliedowns Message
14 Apr 2011, 04:43 PM

These stories are so interesting. It's such an affirming thing to hear others tell of experiences similar to mine. My son also has always had lots and lots of thirst, and of course, lots of pee. I'm pretty sure that's a Dent's thing. But the foamy pee isn't just Dent's. it's any kidney disease that involves protein in the urine. For several years, my son's neph thought he had Nephrotic Syndrome, partly because of the foamy pee. The proteins in the urine are different proteins in NS and Dent's, but they still cause foaming!