Almost 3 Y/o Daughter with Kidney Reflux

Hi J.,
I actually had this as a child, only it wasn't caught until I was 11 years old. My doctor kept telling my mom I must have been having ear infections, when I was actually having UTI's. Anyway, at age 11 I had a very serious kidney infection which is when they found out I had kidney reflux in my left kidney. By the time they caught it, 80% of my kidney was already destroyed. The urologist put a stent in the opening to the kidney to prevent the reflux, and since then I have not had any issues. He said had they caught it earlier, they would have been able to save the entire kidney. I am now 28, and still have not had any more issues. I would definitely get a second opinion before surgery, as there may be other options that are less invasive. Best wishes!

Hi J.,
I don't have any experience with the surgery. I just wanted to say that I was happy to read about the other that have dealt with this and are doing fine now. My 4 yr. old daughter has had 2 UTI's in 4 months. They said she will need to see a pediatric urologist if she has another one since it could be kidney reflux and if not corrected it could lead to kidney problems. I'm so scared she'll come down with another one. If she even feels a little warm a start worrying! I feel much better after reading this post. Good luck to you and your daughter next week at your appointment.
*hugs*
L.

I don't have first hand experience with this condition, but my best friends daughter and granddaughter have it. They never really did anything except treat the symptoms for the daughter (she's 26 now) and because they didn't always know that she had a kidney infection her right kidney has completely shut down and the left one only operates at 50%. Now her daughter was diagnosed with it when she was 4 mths and when she was 11 mths old they did surgery. Since then she hasn't had any problems and at her checkup each year (she's 5 now) she's doing great....

I don't know who her doctors were, but the little girl went to Childrens Hospital by United Hospital in the twin cities.

Good luck, please email me if you have any questions. I can contact my friends daughter and see if she would be willing to contact you if you want.

Renee

J.,

my now 5 year old was diagnosed at age 3 with bilateral grade 5 reflux. I will admit it was the scariest time of my life!! We had an awesome pediatric urologist. He explained everything to us and the pros and cons of surgery vs. the Deflux injection. We opted for the surgery, and while it was terrifying, I am so happy that we made the decision. We were told to be prepared to be in the hospital for 4 days and we were out in less than 24 hours. he first day home, she took it easy watching movies on the couch with me, but by that evening, she was fighting with her sister!! If you have any questions, please feel free to email me.

When my daughter was 2 1/2 years old, she had kidney reflux and spiked a fever to almost 106. Very scary. Went in to convulsions. We did have the surgery, where they crossed her ureter tubes and reimplanted them. She has never had any problems since, and she is now 26! Good luck.

Hi J.,
My almost 4 year old has reflux grade 2 on one side and grade 3 on the other and she's been on preventive antibiotics for over two!!! years now. I hate it that she has to take the meds and can't imagine what this might be doing to her for later on in life. But on the positive side, she's only had one break through UTI with no kidney damage so far, so we've kept at it. She has her next VCUG coming up soon and I'm hoping it will show some improvement this time or they may bring up surgery.
I completely sympathize with your helplessness when they're sick and I hope things go well for your daughter.

We just went through this with my five year old. We had a "deflux" procedure done and it was wonderful! It was done at Children's Hospital. It is all done through a catheter - no cutting! They insert a catheter, just like the VCUG, and send this solution through it. I don't remember what it is, but it is something that is already in the body, so it isn't some kid of foreign substance being injected into your kid. Once it is done, they do another VCUG right on the table to make sure it worked. The procedure itself took 15-20 minutes. She was put to sleep for it because it is uncomfortable and they needed her to lay still. So, including the prep time and the wake up time we were there for 4 hours start to finish. We were only away from her for maybe an hour of that time. It was awesome and I highly recommend the procedure. The only "issue" was that urination was painful for the next 24 hours or so, but once she worked through that, no problems. Good luck!

Hi,

2 of my grandsons had kidney reflux which was discovered at birth. They were both on antiobiotics for a year. One grandson had to have surgery after a year and the other didn't. I understand that kidney reflux is sort of a common problem. Both boys are doing well now.

For you daughter - as you know - be sure she is getting plenty of liquids. Also since she is on antibiotics, it is killing off all bacteria in her system and she needs the good bacteria to fight off those onsets and build her immunity.

If you want some suggestions on that, please let me know

L. L
http://www.livegreeneveryday.com

Hi J.. I just saw your post regarding kidney reflux and thought that I would share with you my experience. When I was 20, I had my 3rd kidney infection in less than a year. I was sent to a urologist and told that I had reflux on both sides and double uereter's on both sides. I was told that I would have to have surgery immediately and that they would have to reimplant my uereter's into my bladder to stop the reflux. My left Kidney was already only functioning at 20%. So, I just want to let you know that since having the surgery, I have had no more problems. I am now 42, and have lived a very normal life.

We will keep you and your family in our prayers for a full and fast recovery for your daughter.