Seeking Advice for Bilateral Renal Reflux

My best friend's daughter had the same condition & had the surgery. Everything's great now. I can put you in touch with her if you'd like.

Hi K.,

My daughter (nearly 5) also has reflux. I'm so sorry that your daughter has had to wait for so long with all the tests! Mine has definitely *not* handled that well at all, now dealing with some pretty stiff emotional difficulties as a result -- I hope yours has handled it a little better? I seriously wish that they would find another less heinous test to diagnose this thing. Anyway, as for your question, that's a tough one. With some improvement to a grade 2, personally I'd probably go with the Deflux (the injectible?), just to see an end to the testing and the meds. The rate of success is better with the reimplantation surgery (in the 90%s), but the Deflux is nearly as good in grades 1 & 2, so I've read (in the 80%s, I believe). At the worst, I think you may have to repeat the treatment, but it's not as invasive (still, something you wouldn't want to have to do, surely). I'm not a doctor, of course, so this is just my opinion, based on my own experience and what I've researched on the web. I think even Bukowski told me that if they haven't grown out of it by age 7 or something, they probably won't. Of course, I think he also told me that many have grade 1-2 and don't even realize it. With girls, it's a little trickier than with boys, in that pregnancy complications can arise later in life should kidney damage result. Ack - I am on the internet waaaaaay too much. :)

My history -- Olivia was diagnosed at 16mos, after her first UTI at 14mos. We've been to see both docs here, and we finally landed on the one that we liked (we're in Cary, so we probably see the same doc -- Bukowski?). I argued the entire time, but he had her wait it out till last September, when she finally had the reimplantation surgery. Olivia had unilateral high grade 4 on her left side, plus a Hutch diverticulum, so only the reimplantation was an option for her; Deflux was out.

Thankfully, the reflux was corrected, but the diverticulum wasn't. Unfortunately, though, she was one of the unlucky 1-2% of VUR patients to develop contralateral reflux in the other ureter, where before (I think in 5 VCUGs) there never was any. So, what we thought was the post-op VCUG last April was the first of a whole 'nother round. We go back for another VCUG next month to see if we have more surgery to fix the right side, now a low grade 4 (not to mention the left-side divertic again).

Hope this long-winded answer helps!
M.

I have two daughters with renal relux, but only on one side, but we have been treating my older daughter with antibiotics for about 4 years, she's now 7. The results have been mixed. She has not had any infection in the four years, but reflux remains. If not gone this year, I am considering surgery because she is getting to an age where the VCUG is embarrassing for her. The injection treatment may be what we choose for her. My younger daughter who is four is also on antibiotics and has not had any infections, and the relfux has been downgraded to a 1, so will probably remain with this course for her for a little while longer and hopefully she will resolve without surgery. Don't know if this is helpful for you, just my experience.

Hi,
My name is R. and I don't have an answer for you, but I am curious about your daughter's history, as my daughter was also diagnosed with vesicouretural reflux (grade 4) at age 6 weeks. She will be 2 in November and has been on prophylactic antibiotics since the original infection. My husband and I were scared and researched alot online, but we were somewhat relieved when at last year's visit to Kosairs (for annual tests)they said her condition had improved to grade 3.
Has your daughter been on the antibiotics, or has she had any infections? Please let me know what kind of treatment she has had, and if the doctors are insisting on a surgery for it. I have never met anyone in the same situation, and I'd like to know the different treatment options out there. Sorry I can't suggest anything, as I am learning also. Thanks, R.

Hi! I am so sorry to hear that you are going through this. I actually have this reflux which is usually found in children, as you have probably been told. My mom did not opt for corrective surgery with me and I have been on antiobotics much of my life. I am now 23 and have had many uti's through the years and almost wish my mother would have opted for the surgery. They told my mother that the antibotics would help and that it would "go away". Well, here I am 23 years old and I still have the problem. The antibotics did lessen the condition...I was a grade 5 and now a grade 2. When I started being sexually active it flared up again despite antibiotics and again when I was pregnant. Come to find out I have scare tissue now because the antibotics "disguesed about 13 years of damange that was accuring because since I was not getting bad enough UTI's to think anything was wrong.
I would say if you opt for the antibotics and hope for it to clear up that you make sure you go every year for a check up and no matter if your child "feels fine" have the tests done to make sure everything is actually ok!!
I hope this helps a little! SMILES AND HUGS!

I have no personal experience with a child with Vesicoureteral Reflux, how ever I did have some friends that had it as a child. They did do antibiotics until a certain point when they were big enough and strong enough to have the surgery. My understanding is that the whole goal is to prevent contaminated urine from going up and causing scaring on the kidney that can ultimately lead to renal failure and a need for a transplant. My advice would be to make sure that you have a good qualified Pediatric Surgeon. I think Duke is near where you are now, and I might go see one there, because they will be on the cutting edge of what is the best thing to do in this situation. Also I assume that your older child has also been checked for this, because it can be hereditary. Medicine continues to improve. I know that one of my friends had surgery when she was small, and then she would occasionally have a UTI, no dribbling tho. She did have a revision of one side because a newer and better technique came out. At this point in time, don't be afraind of the antibiotics that your child is on, but make sure that she is followed by a PEDIATRIC urologist, not a general urologist and make sure that with the Pediatric urologist and your Pediatrician, she is very closly followed for break thru UTI's, high blood pressure, and other renal involvement. Good Luck, I know that it is difficult to make that type of decision, but make sure that you are getting the best information for your child. Also remember the internet DOES NOT have the latest and greatest cutting edge medicine.

Hi,
My friend's daughter had the same thing, in fact, she just stopped wearing the "special" underwear a few years ago because the surgery made her in continent and she ended up getting all kinds of UTI's afterwards anyway. She was 6 also when she had the surgery. I told her to get her on some cranberry pills. She thought I was crazy, but was desperate! Her daughter would get 4-5 UTI's every month without fail. She'd have maybe 2-3 days inbetween infections. She put her on cranberry pills and her daughter went for 4 months without 1 UTI! She now sees a Chiropracter who also does natural medicine and put her daughter on a few other herbs. Their healthcare costs are almost nothing (herbs are A LOT cheapter than prescriptions) and her daughter hasn't had a UTI in 1 1/2 years.
I know that there are a few natural health (or Homeopathic) doctors around here, you may want to try that first.
Good luck with that!
Y.