Living with Kidney Reflux(Vesicoureteral Reflux)... Is Anyone Else?

Michelle - posted on 10/08/2009 ( 22 moms have responded )

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My daughter, Lizzy, is 18 months old(finally) and it was a year ago that we(my FH and I) learned that she had Vesicoureteral Reflux. The way we found out was that she ran a fever of 104.5 and we rushed her to the ER... We found out that she had a Urinary Tract Infection, which is not normal at all in 6 month old babies, and ran tests(blood and urine). They also did a sonogram on her belly and found out the issue.

If anyone is wondering what Kidney Reflux is, here is a website that explains what it is and what happens. It is http://www.drgreene.com/21_626.html

I wanted to know if anyone is going through some of the things that I am going through with my daughter. Whenever she has a fever, we are not sure if it is just her teething(because she is still doing so) or if she is trying to get another UTI... We have to go see a specialist once to twice a year with her and have more check-ups than usual goes on. I just sometimes feel very alone in the fact that I worry about her because she is in stage III out of 5 stages and that it has a great chance of not correcting itself than it doing so..

I would really like to talk to anyone about this. I just wanted to write about this and get it out. Thanks for listening.

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Jessica - posted on 03/17/2013

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Hi, im Jessica. My 3yr old daughter has stage 3 kidney refulex. She has been in and out for weeks at a time in the hospital. The dr tryed meds but the one they norm. Use dosent work for my daughter they have to use a stronger med. It works/helps but after ten days of being on it a week or so will go by and she is sick with fever. Im scared to sleep when she gets sick. Now she has to see a specialest and just this past feb on her first visit the dr said she hsas to have the sergery. My qustion is what is the best wsy to go? He gave us the choice of open sergery or micro sergery??? We go at the end of the month. Dr said on first visits he never talks about sergery but in my daughters case he said it the best thing due to she cant stay out of the hospirals.

Michelle - posted on 09/27/2011

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To everyone that has replied to my story about my daughter, thank you for letting me know that I am not alone. A general update on her... She is now almost 3 and half years old and into everything. She is supposed to be on antibotics but I took her off of them because she has not had a uti in a long time. One cause of UTIs I found are bubble baths so she just does not have a bubble bath.

To answers some questions:
@Brittany, I just wait out her fevers if they are on the lower side. However, if her fever gets over 103, I start to take her to the ER or her doctor due to her condition.
@Shauna: My daughter has a hard time pooping... She can go pee-pee all day long but she has a hard time having a bowel movement. I don't understand why she does but to combat it, I try to give her applesauce or bananas every day(which she loves), and give her apple juice. Those seem to help her alot.

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Alyssa - posted on 05/11/2014

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Hello, my name is Alyssa. I am a 23 year old adult with Kidney Reflux. I'm still learning about it as I have all my life, but I tend to stay away from doctors since my childhood was ruined on them. I am curious to everyone's situations with this as I have had some hard times, but relatively unsure what to do or expect. I am told things like sugars rising, fevers, nausea, UTI's and pain are all symptoms of getting sick. Recently I had all the nausea, pain, and slight sugar raising. But no fever or UTI. Can anyone perhaps tell me what that means? Or should I just stop be negligent and go to the doctor? I am a broke college student with no insurance who happens to make too much money for anything anyway, hence the staying away from doctors. I also have to always remind them whats wrong with me. I know most of these posts are from several years ago, I hope that your daughters are happy and healthy. I have only met one other girl with this, and she passed due to this and a few other complications. Maybe if anyone knows any home remedies and particular life styles and diets I could possibly refer to for help?

Any information would help. 23 years with this, and I still have no idea what I am doing. I will be praying for all of your daughters and for you with the knowledge and faith you need to help her.

Shahana - posted on 05/01/2014

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My daughter has had VUR since birth and is now 12 months old. We just found out, after testing, that she has grade IV reflux and will need surgery. She has been on prophylactic medication for a few months now and has had a total of 3 febrile UTI's with her fever spike up to 105 each time. She will have surgery in November at a top hospital with pediatric urologists who have performed the surgery many times and are very skilled. Regardless of knowing this information, I am very scared and sad for my daughter. Can anyone share what to expect after an "open incision" surgery and success rates? I want to help my baby as much as I can and I have been reading everything I can find on this condition, however, the success rates seem a little vague and I wanted to get some firsthand feedback. Thank you. Prayers for all of your children…please keep my baby girl in your thoughts as well! Take Care, Shahana

Macye - posted on 01/07/2014

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My daughter is 6 months now but was dianoised with reflux of the left kidney at just 2 weeks old. She was at a stage 4. I found out when she was. Running 103.01 fever. I was so scared. We rushed her to the hospital and she was in the hospital for 2 weeks and was treated for UTI and. Ecoli in the blood stream she was then sent home and was home maybe 2 days when I had to rush here back to the ER again with really high fever. She was admitted again for the same thing and all they wanted to do was the same treatment all over again. I stayed 2 days and my husband and I decided that we need to have her transferred to a children's hospital where they specialize in kids. What took the other hospital 32 wekks to figure out which they never did, children's knew in 2 days of my daughter being there. She was in the hospital for 3 weeks before she came home. It was very hard to deal with. She was discharged on antibiotics everyday. They said that we will check her at 4 months and see if there is any improvement. We went back at 4 months and they ran the tests and we got results a week later. Her results was that there was no improvement at all. She is still at a stage 4. I was given the option to do surgery or want till July and do test again a and go from there. If there is no improvement then they are going to do surgery. She is still on the antibiotic until we go get test done again. The antbotics seem to help but she still has her rough days. I had never heard of reflux of the kidney until now. I have spoke tons few people that tell me that thee kids had it and grew out of it. It makes me feel better. I really do not know that much about this condtion.
I have kinda felt alone in this until I found this website. I feel better knowing that there are people out there that know what I am going through with my daughter.

Anyse - posted on 12/07/2013

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Hello there, I wad actually born with this disorder. I am currently 28 and fear my son has it as well. I was diagnosed around 2 and had surgery to fix the disorder at 6. Granted this was years ago I was on a small dose of antibiotics until my surgery. I had grade 5, it has also caused permanent kidney damage to one of my kidneys. I can tell you that there is hope, the key is to fine a great team in the specialized field of urology. I attended sick kids in Toronto, ont. We are on track to do this for my son. I just have to be careful of for any type of bladder infection but other than that this disorder has not affected me in the long run and I actually have great memories of my time in sick kids hospital. I wish u and your family lots of luck !

Barbara Christine - posted on 07/24/2013

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yes, they did the same with my daughter. I begged and took her to so many different doctors and at age 9 she was diagnosed at stage 4 and prepped for surgery. Now she is having issues with gastritis

Barbara Christine - posted on 07/24/2013

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My daughter was nine years old when she was diagnosed. For years I took her to many doctors and it was never detected til age 9. Now both kidneys are really scarred but doing well, they tell me but she now has gastritis. She did have surgery to clamp off so that urine could no longer flow back into her kidneys. Worried

Emily - posted on 02/19/2013

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Hello my name is Emily and I have a 6 year old with VUR. I am new to this blog, but I have been doing research on VUR and I came across this blog. We found out that my daughter has VUR back in October. To go back a little ways in the summer of 2011 we had to take her into the ER due to horrible stomach pains. Come to find out she was extremely constipated. So constipated in fact that on the xray it showed it was all the way up in her stomach. At that point the doctor put her on miralax as needed and we always kept a close eye on it. In October of 2012 she used the bathroom 5 times within an hour and then went in her pants (something she hadn't done since she was potty training). She never complained of any pain and didn't have a fever, but I took her straight to the doctor to have her urine tested and she most definitely had a bladder infection. Our doctor went ahead and wanted to have the ultrasound and catheter test done. At this point I really had no idea what the severity or anything was with this problem, nor at the time did I think the chances of her having it were slim to none. Well we were wrong. On one side she is at a 1 and on the other side she is at a 2-3. We talked about the antibiotic, but my doctor said that there had been studies done that the daily antibiotic really did any good and that as long as I keep a very close eye on it and get her in at the first sign of any symptoms we would be okay. In fact he wrote a scrip in case it is on the weekend so I could take her to the hospital and have her tested in the outpatient. He said that if she were to have one or two more he would want to go ahead and have the surgery done.
Well we just found out yesterday she has her another one. We have a checkup on February 28th and I am kind of suspecting he may want to refer me to see about surgery. My question is, are there any moms out there whose children have been on the daily antibiotics and if so have your children continued to have infections? Also are there any moms out there whose children have had the surgery and how has the outcome been? Any advice will be helpful!
Thanks!

Earnina - posted on 12/13/2012

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My 8 year old son who has been potty trained since he was 18months old began to present signs of VUR.... urinate on himself, leak throughout the day and night time bed wetting. Doctors gave me the run arounds because he never present or as tested for uti's. After a year and a half of begging, pleading, and frustration he had a VCUG and wad diagnosed with VUR stage 4 of the left side. He now has to have Renal ultrasound,and a DMSA scan to check his kidney function next week. Im very scared for his prognosis because unlike most cases he grew into it instead of growing out of it. His kidney has been almost completely filling with urine for almost 2 years. Has any one else experienced anything similar.

Reyna - posted on 01/22/2012

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Hi my name is reyna.I am not a mom but a child 13 years old with kidney reflux i am at stage four. Had it since i was in my moms belly. I have to get a cheak u every 6 months. I had 11 surgries in my 13 years.

Wendy - posted on 11/05/2011

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Hello Michelle!!! I had kidne reflux as a kid. They found it when I was about 9yrs old. I have since grown out of it ( I"M almost 25), however I'm still prone to getting UTI's I really hope it corrects itself like mine did. Good Luck!!!

Daphne - posted on 10/19/2011

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Hi there!



Just saw your post and thought I'd write to you :)



Ohh your poor little girl! I really hope she out grows it...



I grew up with a Vesicoureteral Reflux and was diagnosed when I was 18 months... I went through years of monitering, tests, sonograms etc & spent alot of time going in and out of hospital and backwards and forwards to the doctors.. I acualy out grew my vesicoureteral reflux not long before they had planned to opperate! But I still suffer from severer UTI infections....



My 3 1/2 year old had alot of problems when he was younger but has come right as his bladder/kidney problems were caused through him not being able to pee (he had to be circumsized as his foreskin had grown closed) But I know how worried I was about him having the same problem as what I had grown up with... Still waiting to see how my 1 year old goes as he it still being closely monitered by my doctor for any sign of problems...



All the best for your little girl :)

Shauna - posted on 09/26/2011

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Hi, my daughter has VUR, diagnosed a year ago when she was 4. My story is kind of long, but I'd really like to get some feedback as to what kind of antibiotics are being used to prevent infections?
My daughter has been on nitro furadantin (sp.)
Also, anyone's child that has VUR also have bowel issues? I'd appreciate any comments. Thank you!

Brittany - posted on 05/11/2011

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What do all of you guys do when your baby ends up having a fever again with the reflux? Do you all take them to the dr again? or do you just wait it out? my daughter just got diagnosed with a level 2 and just started bactrim today. i was just wondering what to do if she has another fever. plus she is throwing up today too so i am a huge worry wart

Lacie - posted on 10/29/2009

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Wow my 18m old daughter has reflux we found out when she was 9m. She kept getting fevers for no reason and finally the dr. tested her urine and she also had a uti this was at 5m they got her into the specialist 4m later. She ended up having reflux and was born with 2 ureters, the tube that goes from the kidney to the bladder, they put her on bactrim till summer of 2010, then they'll check it again to see if she still has it. they said shes in no pain as long as she takes the medicine once a day, it keeps her from getting infections, but still every time they get a fever it is worrisome. Poor babies, anyways this is my story your not alone.

Lee-anne - posted on 10/15/2009

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Hi Michelle, well I got good news from the doc, the urine test was clear, they think it may have just been a virus, thankgoodness, goodluck with your lil girl and all the best for her future, Lee-anne

Lee-anne - posted on 10/09/2009

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Hi Michelle, I will get them to do all the tests again, I just need to know so I can monitor her. I'll keep you updated, hopefully with good news, Lee-anne

Michelle - posted on 10/09/2009

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Hi Lee-anne. Thanks about that... You might want to tell them to do a urine and blood test to find out what is going on... and then do another sonogram to see if they might have missed something the last time.

I wish your little one the best as well. If you don't mind, keep me updated on your little girl. We moms have to stick together.

Lee-anne - posted on 10/09/2009

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Hi my lil girl, Tahlia, who is now 16mths is having tests atm, when she was 8mths she had a fever of over 40(Im in Australia) so we took her 2 the hospital... We found out she had a Urinary Tract Infection, which as you said is not normal at that age. They did an ultrasound and found nothing, but now shes been having high temps for 4 nights and all the symptoms point to another Urinary Tract Infection, so Im not sure if maybe they missed something, I find out in a couple of days, but as you said its not common so it helps to no we re not alone, I wish your lil 1 all the best, Lee-anne

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