hydronephrosis in baby boy - Mothering Forums
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#1 of 3 Old 12-13-2002, 08:55 PM - Thread Starter
 
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Hi,
I am looking for any info regarding alternatives to the medical management of prenatally diagnosed hydronephrosis. My 6 month old son was found to have "mild bilateral hydronephrosis" (enlarged kidneys) on a prenatal ultrasound I had because I was "overdue" by 5 days. He was born at home (VBAC-yay!!) and we agreed to take him in for a renal ultrasound when he was 3 weeks old. He was found to have mild hydronephrosis on one side, the ped recommended prophylactic antibiotics and a VCUG xray, which sounds extremely invasive and traumatic. We said we wanted to wait and see. At his last renal u/s last week it was found that he had mild hydronephrosis on both kidneys again. We are being referred to a nephrologist and we are being told that we really have to have a VCUG and put him on antibiotics for years to prevent UTI's.
We are confused and want any info on alternative approaches to this condition that anyone may have tried.
Thanks, Mary
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#2 of 3 Old 12-13-2002, 09:09 PM
 
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I hope someone out there can possibly help you with alternative therapies.

My daughter was born with a kidney in her pelvis, actually behind her bladder in front of her uterus. She had many initial invasive procedures including renal cystograms and the like. she was also on preventative antibiotic therapy for three years after her first UTI when she was 6 wks old. She was so sick from that UTI, she almost died, as the simple UTI turned into "urosepsis", effectively she has systemic poison running through her little body. she was in the Pediatric Intensive Care Unit for 8 days, and at one point was so sick we had her baptized. she got better, came home, and in time out grew the reflux that was causing the real porblem and after 3 years came off the antibiotics and hasnt had an infection since (she is now 15). The doctors at Yale University in Connecticut saved her life, and i am eternally grateful. she was later cared for in florida by the University of Miami Childrens Hospital. she also had some hydronephrosis on the pelvic kidney that i believe is still there today. we monitor her blood pressure religiously, watch her calcium intake and take her for routine U/S every year. i cant stress enough how important it is that you stay on top of this potentially seriuos problem. I was terrified and horrified that they would have to do those awful tests and ugh, forget about the prophylactic antibiotic therapy. but possible serious complications merit your vigilance.

good luck
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#3 of 3 Old 12-14-2002, 02:35 AM
 
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My dd too, has hydronephrosis, reflux, grade 5, on the left side, with a duplicated collecting system and a megaureter. She had two terrible UTI's when she was 5 and 7 weeks old (both requiring hospitalization), and was then on prophylactic antiobiotics until this October. She has had three VCUG's, two IVP's, three renal ultrasounds, and two procedures under general anesthesia (one for the surgery, one to remove stents from the surgery). Contrary to how that all looks : I'm not real big on lots of medical interventions. But I've said this before, and I'll say it until I die. If your baby has reflux, and your baby is getting lots of kidney infections--make no mistake, they will *all* be kidney infections, because that's what reflux does, send urine straight up to the kidneys and cause damage--your baby can have kidney scarring, leading to kidney damage and kidney failure. It's about his kidneys, and without kidneys we die.

I don't intend to alarm you needlessly, but I do wholeheartedly believe that a VCUG is well worth the invasion if it means a better quality of life. From my perspective, even with one kidney, one has to watch contact sports, or high risk sports such as skiing, etc., and your child has a whole life to live. Hopefully your son doesn't have it, and then there wouldn't be anymore VCUG's. Or, if he has a low grade, he'll grow out of it. I personally believe it's better to arm oneself with information, and I guess that's also why I've gone through with the testing. It's no picnic. But my daughter's first one wasn't as bad as the second one. She cried only during the insertion of the catheter. Her third, she sang through the xrays.

I've read somewhere else on these boards that catheterization is worse for boys than it is for girls, and I've also been told that some people have their children mildly sedated for the tests to decrease the trauma factor. We haven't done that, but if DD ever needs another IVP, we certainly will.

Good luck.
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