13 answers

2 Year Old Daughter Just Diagnosed with "Vesicoureteral Reflux"

My daughter had a UTI that became a kidney infection. Her doctor has us go in for a renal ultrasound and a VCUG. The renal ultrasound showed that one of her kidneys is small, and the VCUG showed she has vesicoureteral reflux, a condition where urine flows backwards from the bladder into the kidneys. We just had the tests done today, and the radiologist said she would give our doctor the report, and our doctor would give us more detailed info. But in the meantime I would like to hear from others who have been through this with their children. Was your child put on long-term antibiotics? Was surgery necessary, or did it resolve itself as your child got older? If it did resolve itself, how old was your child? Or just any other info you would like to share. Thanks so much.

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My five year old was diagnosed at 9 months after developing a UTI. We did the VCUG and renal ultrasounds. My hudband's cousin's children all had reflux, so we assumed it was gentic in some way. We chose to put her on antibiotics once daily (keflex). She never had another UTI. She had two more VCUGs and the reflux was gone by the time she was three. She did not have slow kidney growth, though. She recently had them measured again and they are normal.

One thing that our doctors noticed at the end of her case was that they never changed her Keflex dose in three years. The nephrologist never adjusted it and it didn't occur to us. So her dose from being 15 pounds to a 30 pounds was 5mm. It was likely not having much effect anyway. I think if our youngest showed signs we would have her diagnosed, but consider skipping the antibiotics and just be very aware of UTI symptoms. She seems to be immuned to Keflex now which can be frustrating.

Hello A.,

My son Joseph was born with hydronephrosis of his left kidney which was discovered on my 22 week ultrasound. He was given a low-dose antibiotic from birth and had two surgeries for reimplantation of his left ureter before the age of two. He is now ten years old and although his left kidney only functions at 18% the right one makes up for it and he is an active, healthy little boy. I would be happy to talk to you more about your daughter's diagnosis and our experience if you would like to contact me. My name is D., I am also a SAHM and Joseph has a younger sibling Rowan aged four. You can email me at ____@____.com or call me on ###-###-####. I will be out and about most of today, but at home this evening. I know it's very difficult, but please try not to worry.

My son was diagnosed with reflux at 4 mos old after having a UTI. He had stage 4 reflux on both sides and was treated at Stanford University Urology dept with low dose antibiotics for infection prevention. He never had another UTI. We had quarterly ultrasounds to make sure the kidneys were not damaged, and when we went for his first annual VCUG, we were told that his reflux was completely gone and that we had to do no follow-up. We were shocked and thrilled that it went away so quickly.

My 3 yr old was also diagnosed with kidney infection (pylonephritis). What you need to know is that this disease is a serious bacterial infection that needs to be treated with extended (1 -2 months)antibiotics and/or also INTRAVENIOUS antibiotics. Children that are not put on an extended course of IV ABX can get arthritis down the line.
My daughter is now 12, has been suffering with Arthritis type pain since 4 yrs old, starting in a knee and progressing to her hips and back. She was treated by a regular family pedi instead of a specialist. Truthfully, microbiologists are the ones who really study and understand bacterias and what happens with them in the body. I think the closest thing to them , for a doc who understands mycoplasmas and cell wall deficient bacerias, is a Lyme disease specialist.
What you can do,and what I would do if I knew now what I didnt know then, is to push hard for What you need. If the doc won't give you IV ABX for at least a month, I would use SAMENTO (an antibacterial you can find online) 5-8 drops, 4 times a day.

Check this out:
http://www.medhelp.org/posts/Arthritis/Sacroiliitis/show/...

Do not give bubble baths , ever. If the child ever opens up the urethra to urinate in soapy water, the soap, and any bacteria , will go right up into it.

Hi
Our daughter also had a UTI that turned into a kidney infection. We went through the same set of tests, which ultimately came out OK..but a friend of mine's daughter is currently going through the same issues after a year of antibiotics the reflux still exists and they are considering the surgery. Many children outgrow the reflux, right? I think it is fairly common-good luck with whatever decision you make.

A.,

My oldest son (will be 3 then end of may) was found to have an enlarged kidney while I was still pregnant. My Drs. said it is typically a boy issue. He was put on antibotics from the day he was born. He had his first VCUG when he was 5 days old. He was then diagnosed with reflux. He was the worst stage you can be on one side and about a stage 3 on the other. They gave him a year to see if it would correct itself. However, it didn't. At about 13 months he had a surgery called deflux done. It is a noninvasive procedure where they inject a solution into the bladder. They place it at the end of each ureter to block it so the urine can't reflux up into the kidneys. The procedure was effective and he has been off antibiotics ever since! Now we just have to watch for bladder infections. The Dr said it he gets a bladder infection, that means the solution has moved and they would need to do it again.

Good luck! Hopefully you daughters will correct itself.

My daughter was diagnosed with this in both ureters when she was 6 weeks. She had hi-grade reflux on both sides so she did stay on antibiotics - I think the term is propalatic- until she was 23 months and had surgery. The dose was smaller than if she had an active infection. The treatment varies with how bad the reflux is. I have lots of friends whose daughters had Grade 1 or 2 reflux and it resolved itself, no antibiotics were necessary.

I'm also blessed with a brother who is an urologist so I knew my daughter's docs were doing the best plan possible.
My daughter is turning 10 in 3 weeks and has non relux issues, but the surgery was successful, the antibiotics kept her infection free for 2 years and she has no kidney scarring from the reflux.

Hang in there!

My son has the same thing -- he has had it from birth and is now 7 years old. In my son's case, at birth he had so much fluid built up around his kidneys, they had to insert tubes to drain it out. He also had a surgery to correct. His problem that was his ureters were too long and too wide and they did not close off properly at the bladder, which was why the urine could reflux back to the kidneys. He was on antibiotics for a long time, but was taken off in the last year or so. He still has a small degree of reflux, but hasn't had any infections lately, which I am thankful for. If you have specific questions, feel free to E-mail me directly at ____@____.com.

Hi A.,
I am a RN and when I do not know what a diagnosis is I use WebMD to read about it. I even print out information for my patients from there. The website is WebMD.com Good Luck and I hope that everything turns out well. If you need other questions answered please feel free to e-mail me.
Jenn

My daughter is almost 5 and has "grade 1" reflux, which is pretty minor. But she has already gone through two VCUGs which are pretty tramatic. She has been on antibiotics for a year and a half now. Her doctor says she will grow out of it and we just have to be patient. So we have to keep her on the antibiotics and have the yearly VCUG until she grows out of it. It has been very frustrating. Also, watch her carefully. My daughter, because of the long term antibiotics, got yeast infections, so to counter that we have to make her eat yogurt and take a probiotic every day. Good luck to you!!

I first want to say that I am sorry that you had to go through all of this, but are lucky that they found something. My 3 1/2 year old had both test done last month to find out that nothing is wrong. She has some scare tissue on her right kidney from all the infections and no reflux. My doctor is at a lose as to why she keeps getting UTIs. We were told that if she did have a reflux that they can do surgery to fix it. I just wanted to wish you the best of luck!

Hi A.,

You've already gotten some great responses, but I just wanted to add mine. :)

My son was also diagnosed at 2 months (he's 7 months now)...we discovered it when he had a UTI. He has a grade level 4 on one side, and a grade level 3 on the other. The urologist said a grade level 3 will usually correct itself, but the grade level 4 will probably require surgery. We go for another ultrasound in about a month.
Jackson has been on a prophylactic antibiotic (keflex) since November, and has shown no signs of another infection, nor has he developed any kidney scarring (which is what you want to avoid!) We keep hearing more and more stories about children who have been diagnosed with ureter reflux who end up being completely fine after treatment. Seems more common than we knew!
Bottom line...listen to your doctors, do some research, learn about your options. Seems with proper treatment, your sweet angel will be fine.

My daughter was also diagnosed with this after a UTI at 6 months old. We did put her on daily antibiotics to prevent another infection and possible long-term effects. She was closely monitored and anytime she had an unexplained fever with no cold-like symptoms, we tested her urine to see if she had had a breakthrough infection. Luckily we never had a breakthrough infection.

Our pediatrician diagnosed her as Stage 5 on just the right side. We went to a specialist at Stanford (Lucille Packard Children's), who after reading the test results downgraded that to a Stage 4.

We repeated the tests (VCUG, ultrasound) approx 12 months after the initial tests. My husband and I were both shocked when the urologist told us that it had corrected itself - this was just before her 2nd birthday. We were fully prepared to have to entertain the option of surgery to correct it.

We were also told by the urologist to delay potty training slightly as the action of "holding" it could bring on the reflux again. However, she is now almost 4 years old, potty trained and we have not had another infection since the original one at 6 months old.

I hope that helps, but please let me know if you have any other questions.

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