urine reflux/ frequent uti's in babies/young children

gold21

Mon, Oct 20 2014, 5:45 pm

Anyone have a baby/child with urine reflux?

My daughter was diagnosed with urine reflux as a young baby, like a couple of months old. They said she had a very low level of it though, B"H. (level 1 out of 5)

She is 1 and 3/4 now KA"H.

Just looking for some support and advice from other moms. Maybe I can PM you.

Thanks!

OOTBubby

Mon, Oct 20 2014, 6:17 pm

I have some grandkids with it. It is very important to keep monitoring it to prevent kidney damage. One DGC was on prophylactic antibiotics for a number of years because of this.

amother

Mon, Oct 20 2014, 6:27 pm

I assume medicine has changed a bit, but I had reflux as a kid. I honestly only have a very young kid's understanding of it, and never had any interest in learning more about it.

I took medicine every day for a few years (resulting in a bad appetite - I was a scrawny little kid who was encouraged to eat pizza!) and after a few years I was fine.

They did have to monitor it because of potential kidney problems.

Decades later, I'm a normal, healthy, mother. (And I didn't even say anything before I got married because it hadn't occurred to me! That's how much of a non-issue it is in the long run.)

bnm

Mon, Oct 20 2014, 7:28 pm

1 is really low level. scale goes from 1-5. They usually do a VCUG to diagnose it, 1-3 they monitor further, 4-5 they say most of the time requires surgery so they do it as soon as possible. my son was on prophylactic antibiotics from birth till the second vcug at 18 months showed his reflux cleared up- he was originally a 3.

sourstix

Tue, Oct 21 2014, 7:41 am

I will be watching this. dc wasnt diagnosed yet. but dc is 5months and 2 utis and I sortof suspect sth like it. hope it isnt anything tho she has other issues.

gold21

Wed, Oct 22 2014, 9:01 pm

Thanks for the replies!!

So my daughter had her first UTI at 2 months old. Followed by another UTI a month later. We did a VCUG and were told the reflux was level 1, so we should go on prophylactic antibiotics, but because it's so low, it's like somewhat of a controversy- some docs recommend prophylactic meds for level 1 and some don't, they say just give meds any time there's a UTI.

So we gave her the meds til she turned 1. Then I (stupidly) decided to see how she would do without the meds- like since the level was so low, maybe it had cleared itself up. She had no UTIs for a long time and I was so excited. Then she had a really bad one just this week. Like it was really rough on her. Took 3 days of antibiotics for her fever to go down. So I'm going back to the urologist and doing sonograms and stuff, and another VCUG.

How traumatic is the VCUG gonna be? As a newborn she slept right through it. At 1 and 3/4, she will not appreciate it.

And can kids get UTIs at this age unrelated to reflux? Like there's still a chance her reflux went away but she just happened to get a bad UTI? Like I use to have really bad UTIs as a kid but no reflux....

So many questions...

amother

Wed, Oct 22 2014, 9:40 pm

Dd Didnt have reflux as baby but last summer at 5.5 she had 2 uti pretty close. Then BH nothing till this week where she is currently on antibitoic for it. She just went back to school today.

bookworm10

Wed, Oct 22 2014, 10:07 pm

My oldest had it- VCUG showed reflux level one on both sides. She was on antibiotics for a year and I took her off at a year. BH no infections since.

The first year was rough, we were in the hospital four times for UTI not to mention that every single time she had a fever we had to run to the ER.

gold21

Wed, Oct 22 2014, 10:17 pm

bookworm10 wrote:

Why did u need to run to ER? Antibiotics at home didn't work quick enough? I'm wondering cuz with this past infection, her fever started on Friday second day succos. Didn't know if I should go to emergency care. I waited til my ped's office opened on Sunday morning. Maybe that was risky. It took 3 days til her fever started dropping. Maybe I waited too long to get her meds. B"H she is OK now.

amother

Wed, Oct 22 2014, 10:51 pm

gold21 wrote:

(Amother from before who has reflux)

I had a vcug every year. When I was five, they gave me a sedative - I was conscious but don't remember anything about it. I don't remember anything from the ones before that either, but I was not drugged (I guess I was just too young, and it must not have been too traumatic because I DO remember things from when I was younger than five.) At six, they did not give me a sedative (insurance wouldn't cover it for some reason or other) that year was definitely traumatic for me, and honestly think my parents should have paid out of pocket for the sedative rather than make me suffer like that! Luckily, I did not need any after that!

But IIRC, I was not given a sedative before age 5, and I was fine with it, so I would assume that a 1 3/4 year old would also be okay. I'm assuming you go to a pediatric hospital. (But why don't you find out about the sedative option?)

amother

Wed, Oct 22 2014, 11:09 pm

My son had several VCUG's done. Although it's uncomfortable, I don't think it was painful. He had one as an infant and another as a toddler (about 3 or 4 years old).

bnm

Wed, Oct 22 2014, 11:49 pm

gold21 wrote:

1- you don't stop antibiotics without a clear vcug, if the kid has reflux and gets a UTI it can damage the kidney
2-you might have had urinary reflux as a kid too and just not known about it, if one kid in the family has it they say to test the others.
3- if your kid has a history of UTI/urinary reflux and gets unexplained fever by day 2 you should be doing a urine culture, my son had a clear vcug but we did a new culture at one point anyway when we coudln't figure out the source of his fever