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vesicouereteral reflux and UTI

1028 Views 13 Replies 7 Participants Last post by  eilonwy
Okay so I think this is a load of hooey but let me run this by all of you. Maybe this isn't the right forum. If it's not, feel free to move me!!!
Okay so M just went to the pedi last week because of a UTI. It was her first. No one in my family has had one before, no issues there. She was screaming and crying when she had to pee, telling me her belly hurt, not drinking, and going to pee literally every 2 minutes and having accidents. I had to diaper her again because she was wetting her pants constantly. She was not a happy kid. So I put her on acidophilus, pump some cranberry juice into her and the pedi wants her on antibiotics. I said okay because she was on the acidophilus and hoped for the best. She goes for her recheck and everything is fine. Urine is clean, kid is happy. Well then the pedi drops a load on me. She goes, "well you know, in 30% of cases of children with UTI's, the children have kidney reflux and it's a serious issue that over a 20 year span can lead to kidney failure. It's something that is silent and you won't know until you do testing." WELL, the testing she wants is to admit M(38months) to the children's hospital, sedate her, catheterize her, and pump some dye into her. They would then x-ray her repeatedly to see whether the dye is refluxing into her kidneys. That is REALLY invasive in my opinion! From my research on reflux, it's a problem in children who have chronic UTI's and there are symptoms such as poor weight gain, sallow skin, etc. Keep in mind that M's pedi is someone we go to when she's REALLY sick and for vaccines. She is an antibiotic/meds for everything kind of doc. Smart woman but definitely her ideas on child rearing go in the opposite direction of mine! She was the one who told me to put her in her own bed, in her own room at 4 months and let her cio. I am ruining her by cosleeping and she's going to be difficult to "control" later on, etc etc etc. I'm sure you know the type. Am I doing harm to her by refusing the test? I don't really see the need. Anyone experience this? I am thinking that if she has another UTI, I will authorize the catheter and dye test but other than that, I don't see the need to put her through such an ordeal without good cause! Am I wrong????
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There have been several threads over the past year or 2 on VUR/UTIs, so I'd also suggest searching on reflux, UTI, VUR, etc. You could also search on all my posts, since I've had so few over the years, and look for mine on the subject.

My son had his first UTI at 2 months old, and had the two tests (Ultrasound, and VCUG--that's the one you're talking about). He did have VUR, and we put him on low-dose preventative antibiotics for 10 months, and then re-did the VCUG at one, since they often outgrow it (he did, so luckily he won't need any more VCUGs!!). In my readings on VUR, everything I read said at the very first UTI, a child should automatically be tested for VUR, since it can do such irreperable damage to the kidneys. I have also read message boards on this stuff, and there are definitely kids who didn't have their first (diagnosed) UTI until later, 3-4ish, and did in fact have VUR. So just because it didn't happen early with my son doesn't mean your child would be less likely to have VUR or something. Oh, and by the way, yes VUR is hereditary, but no one in my family/dh's family had ever had it before (afaik) so that doesn't mean anything necessarily. Oh, and I've never ever heard of VUR kids having poor weight gain, sallow skin, any of those things you mentioned. My child certainly didn't, and everything I've read indicates that you can't tell a child has VUR from any symptoms or anything like you describe. And they don't necessarily have to have chronic UTIs at all, they can just have one.

So, I guess you could wait until (if) there's a 2nd UTI, on the grounds that if she has another it's probably a problem, but if she has one it's just a fluke, and if she never has another then there's not going to be any kidney damage (if you catch it in time like you did the first). HOWEVER, the one problem with that is that they can have SILENT UTIs that you never even know about. In fact, your daughter could have had UTIs before now and you might not have even known it.

So, I'd recommend doing the test. No, it's not a pleasant test, but it's far better than her having an undiagnosed condition that causes long term damage, imo. If you check my other posts, I think I've written a bunch of times about the testing experiences we had, so I won't write it up again.

And one more thing, if she ever has a UTI again, or for anyone else reading this. I've heard a lot of people who avoid antibiotics for UTIs (for themselves as adults, as well as for children). I know a lot of folks here are anti-abx. But PLEASE PLEASE always give abx to child/self w/a UTI, and take them till they're done, because more often than not, an untreated UTI can lead to a kidney infection (with or without VUR), which is very serious. This is one case where abx are really necessary.
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DS just had the VCUG last week and was not sedated for it. There is really no need for admission to the hospital, we went home immediately after and he had surgery just before the VCUG for an inguinal hernia.

This is definately something to take seriously but I wouldn't head off for a VCUG after just 1 UTI. If I were in your position I would wait and if she did have another UTI I would ask the ped for a referral to a pediatric urologist. The urologist can send you for the kidney/bladder ultrasound and on for the VCUG. Probably to a radiologist who doesn't see the need to admit her to the hospital.

You can also search for threads containing the terms "vesicouereteral reflux" and "VCUG".

Good luck to you.
My dd also had the test (more than once) and eventually surgery...probably anywhere you find one of Elismama's posts, you'll find one of mine too since I like to stick my 5 cents in on the topic whenever I find it. Yeah, it's invasive, but I think it's worth it. If she has it, undiagnosed, it'll cause far far worse problems later if it's a high grade, imo.

Wow ladies. Thank you for your advice. I am sorta leaning towards doing it now. You scared me Elismom! I am going to go do a search for your posts and the posts of LiamnEmma. I guess my biggest worry was just subjecting her to an invasive test that didn't SEEM to be necessary. Apparently I must be misinformed. All the pamphlets that the pedi gave me at the office visit stated that VUR had side effects such as sallow skin and poor weight gain. Maybe that was the long-term affects after the kidneys start really malfunctioning and starting to shut down?????? I don't know. I am going to search for those posts and call the pediatrician to speak to her again. Thanks!!!!!
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Originally posted by elismom
HOWEVER, the one problem with that is that they can have SILENT UTIs that you never even know about. In fact, your daughter could have had UTIs before now and you might not have even known it.
Wow! How would I not know about them? I mean, does it not hurt her? Are there less of a quantity of bacteria and that means that it's not as damaging?
I don't mean to sound ignorant but I always just figured that I would know if she had one. This is coming from someone who's never had a problem like this before obviously so I am not so informed. HELP ME!

I feel badly, as if we didn't really respond to you with your first post. For me, the last time this came up, it got ugly at the end and so I'm a little wary of inciting anger again. My bad. I thought about pm'ing you, but then I decided to see how you reacted to the posts.

It is a scary thing, and the silent UTI's always puzzled me too. Then, after my dd's surgery, which, obviously, is REALLY invasive, I realized that young children have a completely different take on pain than adults. As it turned out for my dd, she had a ureterocele in her bladder--a big pouch--and she was having bladder spasms every single time she peed, and sometimes she'd stand on her toes, screaming while she did it--but not crying--and other times you'd never even know. Weird. My dd did have slow growth, but she was never sallow, and her growth could also be attributed at least in part to her genes. We're just a small family on both sides. But she did gain about 6 pounds right after her surgery at 14 months...

There is a sibling factor too, and since we didn't want to invade ds too much, we had him given an ultrasound on his kidneys just to make sure there were no gross abnormalities. This won't completely rule out reflux, but it will tell you if there are issues warranting further investigation in the absence of any known UTI. We never took it any further with him, and hopefully he doesn't have it. My former boss' dgrandson went undetected until he fainted at about the age of 6, his kidneys were in such dire shape.

I don't want to unnecessarily scare you, but I do think it behooves you to give it thought, as you are. Good luck. I'm happy to share any of my experiences with you, I just wanted to be sure you wanted to hear about it first.

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Leah, I had wanted to PM you but somehow my PM's got turned off and I can't figure out how to turn them on again! I am so computer illiterate. And half the time I had PM's on before, I would forget to check them and the poor people who PM'ed me would feel like I was ignoring them! ARGH! Can you tell I'm a single mumma to a toddler who works AND goes to school? I'm a little scatter-brained sometimes! So if you would like to email me, my email address is [email protected]
I don't mind posting it on here. I would LOVE some extra advice from someone who's been in this position before. Your poor daughter. I went back and read your posts and MAN, I felt so bad for your daughter and yourself for having to deal with all those issues. The poor thing must have been in so much pain!
I called the pediatrician who is busy all day today but will call me before I head to work at 8:30 tomorrow morning. I read in those back posts that they cannot be given any sedative because it affects the results(which makes sense because the muscles will be relaxed and such) but another poster had said that her child got Versed at Rainbow Babies and Children's hospital in Cleveland. Do you know anything about that? I think I would rather have her sedated a little if possible because catheterization is NOT a fun thing to go through!!!!!! I know from experience. She's so little and I feel so badly that she might have to undergo this test. Ugh. I'm so torn on this issue. Thanks for all your advice so far. You are a HUGE help!
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Faerybugmady--I didn't mean to scare you, and I apologize for the brusqueness (sp?) of my post, I was just kind of in a rush and wanted to get all my jumbled thoughts out. I guess it is clear that I would lean toward getting the test, but I also understand the concerns/reservations. ANd I never understood the silent UTI thing either, but I have been told that from docs and also from people who it happened to.

As for Versed, I had read that (I think here) too, and I asked around, and my boss, who is an MD, said she would definitely not give Versed to a baby/such a young child (my ds was 1), but I don't know about with a 3 year old, it may be worth asking around/doing some more research.

Whatever you decide, I wish you luck and hope everything works out!
For what it's worth, Emma was given versed (at 14 months) just before her surgery. She was higher than a kite! :LOL I have also heard/read contradictory information regarding the use of versed during the VCUG, and Emma has never been sedated for any of her tests (not because of that, just because I've never asked for it). On the other hand, a friend of mine has two children with reflux--they've both grown out of it, and she has always had them sedated for the tests, so I think it has more to do with the individual doctor's comfort level. It's kind of, "unsupervised", if you will, because--for us anyway--you just go in, the radiologist does the test, and then you leave. So there isn't much monitoring of the child, and maybe that's why some doctors don't want to do it? Maybe that's also why your doctor suggested an overnight stay--perhaps s/he is planning to sedate your dd? Hard to do for a working mother going to school. I hear ya!

For changing to enable PM's (in case you're interested) click on the user cp button up at the top of the screen, then choose "edit options." About halfway down the screen, you'll see "Enable Private Messaging." Click yes. Then, to cue you when you have a pm, click yes on "Pop up a box when you receive PM."


edited to add; oh, and for the catheterization, they use a french feeding tube--much smaller in diameter, although still awfully stingy I'm sure. And with young girls, they should pull down on the labia to visualize the urethra, not spread apart. I've often had to train the nurses.
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My ds had a UTI at 19 days old! (even though his ONLY symptom through the entire ordeal was a high fever, it was a horrible experience, long story, he was hospitalized for 2 nights).

Anyway, after that was over, he did have the ultrasound and a VCUG to rule out internal problems. For the VCUG, he was about 4 months old, he was NOT sedated for the catheter (did not even flinch for it), nor was he hospitalized for the test. Not sure if that's the exact thing you're looking at, though. (btw, everything was normal).

Last week he had (and has had a few times over the last year) non-symptomatic low-grade fevers that last for a few days at a time, go away, come again. It's always bothered me that it could be a UTI, but I always thought, "well if it's a bacterial infection, the fever will get higher, and he'd be uncomfortable." I took him to the ped on Friday afternoon, because it was just really bothering me (he seemed totally fine, but he'd had the fever for about 5 days). The ped said that people can have UTIs that they never know about, and that it CAN (but not necessarily) cause issues later in life. He told me that his mother is suffering from renal failure right now for no apparent reason. He thinks maybe she did have a history of UTIs that were "silent" and thus never treated.

he sent me home with some urine sample bags.
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I don't know why the pedi suggest an overnight stay. I was only considering the Versed because of the scariness of being in a hospital and having people touch her. She doesn't even like me to help her wipe after she uses the toilet so having a stranger touch her bum may weird her out. I HAVE read a few pieces on the controversial nature of Versed though and they did give me pause about it. I called the pediatrician yesterday and we are going to set up the appt to do the VCUG. I guess it's better to be safe than sorry and in this instance, it's her kidneys we are talking about. Seems to me that the invasiveness of the test is a small price to pay to be certain about the state of her kidneys. A 3 year old should not have to be concerned with renal failure!!!! I would like to call the hospital and have someone discuss benefits and risks of Versed with me before deciding on it. I am not so certain I am comfortable with that drug but it seems that is the only option for this test. I think Madyson will be majorly freaked out because she's never been seriously ill before. She went to a hospital once to visit a friend and she was so scared she wouldnt' let me put her down and after we left, she slept for 3 hours. She was definitely stressed. So maybe the Versed would help with that. I'm not sure, but I'm definitely not feeling comfortable with giving it to her until I have gathered all the facts. Thanks so much for everyone's opinions and stories. I am setting up the appt for the VCUG as soon as possible!!!
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Because of an UTI that my DD had at the age of 3, the ped suggested immediately to send her to a specialist doing an indepth ultrasound of her kidneys. This doc confirmed vesico ureteral reflux. There are ways to meizure the degree of the reflux. I think it goes from 1 to 5. Hers was 2. My doc wanted to put her on antibiotics for a year! Instead, I suggested to come to his office every two weeks to have her urine checked and only give her antibiotics if she really had an UTI. Her infections were without any symptoms, but I have "a very good nose". I just "smelled" her urine. That's how I discovered the first UTI. Within a year she had 3 UTI, all got treated immediately with antibiotics. The ultrasound after one year showed big improvement. After two years, the reflux was gone. I think 50 % of all children just "grow it out". If I had to redo it again, I definitely would take the same approach. Monitor her very carefully but give it some time in the hope that the situation improves.
The ped suggested I do also an ultrasound on my kidneys (hereditary factor) since I have had unsymptomatic UTI on and off.
But my kidneys are OK, thanks to God!
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My niece had reccurrent UTI's, and probably several undiagnosed ones. She had an ultrasound of her kidneys at age 4 after a particularly severe UTI, and one of them was scarred very badly (enough that they wouldn't let her take home a picture, which broke her heart!). She was diagnosed with VUR prior to that, but we hadn't seen any infections before.

I would definately encourage you to test for it, because of what other people said about how kids feel pain and because of the potential kidney damage if it's left untreated.
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