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Vesicoureteral reflux (VUR) in 5 yr old: Confused about options
My daughter was finally diagnosed with a right duplicated kidney with reflux grade 2 and 3 in this kidney along with ureteroceles.. she has had 8 utis since September of last year with most of those being from Sept to March with one recent one the beginning of August. She gets 104 and 105 fevers with vomiting and pain with all of the infections. She's had one documented kidney infection. I have been told she does not need surgery at this time because they think it is superficial and it's not really there. She also has a fatty liver along with constipation. They have told me that constipation will cause utis which were on miralax and xlax for this. The urologist has told me that the surgery will not help unless the constipation is under control because she will still get utis but not kidney infections... her right kidney is smaller then the left. My question is should I get a second opinion? The nephrologist is wanting to do surgery but the urologist does not and he is the surgeon who does this specific surgery.
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Hi @jessicag27. Oh, this must be so much information to take in. And very confusing when you get differing opinions from medical experts on what to do next.
This is a perfect situation for getting a second opinion. If Mayo Clinic in Rochester is a possibility for you, I highly recommend Mayo Clinic Children's Center https://www.mayoclinic.org/departments-centers/childrens-center and their specialized Pediatric Nephrology Clinic (https://www.mayoclinic.org/departments-centers/pediatric-nephrology-clinic/overview/ovc-20465380)
Let me know if you have any questions about submitting an appointment request. See more info here: http://mayocl.in/1mtmR63
Hi Jessica @jessicag27, I am so sorry to know of your daughter's recurrent UTIs and I hope she and you are doing better. My 2-yr old was diagnosed with bilateral megaureters and VUR when he was 3 months old. He had as many as 7 UTIs in his first year and nothing seemed to help. His doctors are angels. Now, 2 yrs, a couple of surgeries and a vesicostomy later, he's a happy little guy and we are waiting for the next phase of his care. I just want to tell you to hang in there and ask the questions you need to ask to make the tough decisions you need to make. My wife and I are healthcare professionals ourselves and as we went through that first year of hospital stays, doctors visits, learning to cath, etc, we wondered how difficult it might be for non-medical parents to comprehend what's happening and make sense of the advice their doctor's were giving them. So, hang in there and ask for help like you did here; you are awesome. I recall a conversation by my child's hospital bedside with a pediatric urologist; she explained that the proximity of the gut/colon to the urinary system made it possible for bacteria to translocate from one system to another, bypassing some of the body's defense mechanisms. Hence the concern about constipation leading to new UTIs. Made sense. We've tried our best to ensure he has good GI health with a balanced diet, sources of plant fiber and a daily tsp of miralax in one of his drinks. Hits and misses but on the whole manageable. Hope this helps. Take care!