Pediatric Urology

[TabbyKat]

When I was pregnant with my daughter we found out that she had hydronephrosis on the Left side. * ICU stays starting from 2.5 weeks til 8 months. She also has duplicated systems and other complications and grade 5 vur. She was on antibiotics for infections and profolatics in between. She had many resistant strans of infections and had to be switched on and off antibiotics. Well she had surgery to correct this when she was 6 months old. We went to take the stint out and had to remove the upper portion of her Kidney due to damage. One month later she was still getting infections and they found out that there was a small section of upper kidney that was still attached and collecting urine. Drained that and we were all set no more problems. Well she is 3 now and just had two really bad infections. Went and did a VCUG and she has Grade 5 VUR on the left side again. How fustrating. Has anyone had this happen where they have had surgery and VUR has reoccured? If so what did they do for it?
Thanks anything would help right now. Thanks again

[MyKidsRock]

Hello! My daughter also has recurrent VUR after reimplantation, as well as duplicated ureters. She had her surgery when she was 5 months old, and while everything is in the proper place now, her reflux is still present in all 4 ureters. After 8 infections before she was 10 months old, we decided to have a vesicostomy put in. It is a urinary diversion through her abdomen, and so far has kept her infection free. It's a pretty aggressive move, but we didn't feel like we had a lot of other options at the time since there was no way to potty train at that age.

For Lizzie, we think the surgery was unsuccessful because of a bladder dysfunction. Her bladder is grossly enlarged, and there is some concern that she may lack the sensation to urinate. We won't know more until she is older. I know another mom whose child has dysfunctional elimination syndrome (DES) which caused her VUR to return. Her daughter basically began to withhold urine, and b/c of this, the pressures in the bladder were increased, causing her VUR to return. Holding her urine also gave the bacteria a greater chance to colonize which made the condition worse. Another rare possibility is an occult spinal problem. Occult spina bifida can cause neurogenic bladder as well as VUR. We had an MRI performed on Lizzie in July to rule out spinal problems.

My advice would be to ask for a urodynamics study. This can tell you if there are problems in the bladder that may be causing recurrent VUR. It was very useful for us, and this is when we decided to do the vesicostomy. Just as a side note the girl with DES has done really well with bladder training, and her VUR is resolving on it's own. The other child has had surgery to detether her spine and is catheterizing to keep the bladder empty.

I'd be happy to talk some more about all of this if you want. I certainly don't have all the answers, but I have done a lot of reading and talking to other moms over the last few years. If you want to read more about Lizzie, you can at http://kidneyreflux.wordpress.com/ It also has some good links to studies and other information including DES and spinal problems.

Hope some of that is helpful!

[TabbyKat]

Thanks for all of the ideas but my daughter is potty trained and goes to the potty every 20-30 minutes and she has had an MRI done of her spine and everything looked good. The only other medical issues that she has is an arachnoid cyst in her brain which they though caused a major subdura hematoma. She had surgery to place a shunt. And she has had some stomach issues with diarehha but we have taken her off milk and put her on soy and that has seemed to help. Other than that she is healthy. We are hoping to hear back from her urologist tomorrow to see what he thinks about all of this. We are luck in the fact that Childrens Hospital in Boston has a program for VUR and I hope that they can figure out what is going on without any more complications. I don't think that any of her other medical issues are related to her VUR but I am not a doctor. Please let me know if you know anyone else that has had anything simular to what she has had. Thanks again for all of your help.