Anyone have experience with Kidney Reflux ?

[EllaF1410]

Hey, I'm just looking to see if any other parents have any experience of Kidney Reflux and what will happen from here.

Back story - my DD (3years) fell really poorly in November time, severe high temp, convulsions etc. We ended up on the children's ward where they diagnosed a UTI and started oral antibiotics and we was discharged the next day.

It took about 5 days for her temp to subside, and she was generally miserable.

Anyway, since then she's had back to back infections. We finish the course of antibiotics few days later we start with symptoms again.

She has started to have issues with bed wetting, dribbling in her pants and being unaware, crying after the toilet, constant bellyache, and she now must only urinate 2/3 times a day when I force her to go - she's absolutely MISERABLE! As am I :(

Latest bacteria grew a a-typical bacteria (Enterobacter) and they struggled to treat it.

Our GP referred us to Peads, and we saw the Peads Tuesday, who was certain that she still had the infection. He wanted a sample which we did. And then a urgent ultrasound.

We had the ultrasound yesterday, and it's shown that the urine is backing up her Urethra, she had a couple of Ml in each one. He was scanning her right side FOREVER!

He's obviously going to do the report and send back to the Peads, but I'm worried sick. Does anyone have any experience and what is likely to happen from here?

They said it's unusual that she's only just started having symptoms as usually reflux would be noticed early on in life.

I'm not worrying myself silly... they said the consultant would contact me in the next two weeks. But she's started again this weekend, bellyache, vomiting, crying when she wees and I'm now conscious that the longer this goes on, the more likely for damage to the kidneys to happen!

Any help or advice will be greatly appreciated!!

Thank you - one worried mummy! 💖

[Amethyst2502]

Hello, my daughter now 20 months had a UTI diagnosed when she was 3 months old. She was treated with oral antibiotics and then begun investigations due to her being so young.

She had a kidney ultrasound which showed dilated ureters and then a VCUG which showed she had reflux on both sides (one side grade 4/5 and the other grade 5 so the most severe) and was put on prophylaxis antibiotics. She then had a DMSA to check kidney function which luckily showed her kidneys at normal split function.

Since then she has had no infections and has just had a follow up ultrasound which was positive so hopefully she may begin to outgrow the condition. She will remain on antibiotics until she is potty trained at least and then will see what happens.

I imagine the paediatrics department will do similar investigations although as your daughter is older you may have to push them more as from my research if they have kidney reflux it's usually picked up before birth or when they are very young.

I was terrified when my daughter got diagnosed with VUR and like you was worried for her kidneys but luckily the antibiotics seem to keep any infections at bay and her consultant seems happy that she may be beginning to outgrow it as she gets bigger.

[EllaF1410]

@Amethyst2502

Hello, my daughter now 20 months had a UTI diagnosed when she was 3 months old. She was treated with oral antibiotics and then begun investigations due to her being so young.

She had a kidney ultrasound which showed dilated ureters and then a VCUG which showed she had reflux on both sides (one side grade 4/5 and the other grade 5 so the most severe) and was put on prophylaxis antibiotics. She then had a DMSA to check kidney function which luckily showed her kidneys at normal split function.

Since then she has had no infections and has just had a follow up ultrasound which was positive so hopefully she may begin to outgrow the condition. She will remain on antibiotics until she is potty trained at least and then will see what happens.

I imagine the paediatrics department will do similar investigations although as your daughter is older you may have to push them more as from my research if they have kidney reflux it's usually picked up before birth or when they are very young.

I was terrified when my daughter got diagnosed with VUR and like you was worried for her kidneys but luckily the antibiotics seem to keep any infections at bay and her consultant seems happy that she may be beginning to outgrow it as she gets bigger.

Thank you so much. I'm sorry to hear your daughter has experienced similar! It's so worrying isn't it.

The consultant phoned me this morning actually, and said they've reviewed the scan today and believe that the urine backing up is within normal range for her age. And everything else looks normal.

This was only a normal ultra sound so not sure if that will be enough to see if there was any abnormalities, scaring etc.

I'm so confused now, as she's just getting back to back water infections and it's just miserable for everyone in the house.

Don't really know where to go from here now!

Thank you for your response, and I hope your daughter continues to improve over the next few years xx

[Gracia1892]

Hi ladies !

I’m so relieved to have found some other parents with the same issue.

My daughter is currently 6 months old and we are on our 6th admission to hospital with a UTI. She got sepsis at 5 weeks old with her first one and ended up in intensive care for 1 week and intubated for 4 days , very nearly lost her it was horrific. We then found out from an ultrasound that she had potential reflux in her right kidney, and looked fine initially on her left . We were then in and out every 1-2 weeks with further infections even tho being on prophylaxis antibiotics ( initially trimethoprone I think it was called- only on for 1 week , then moved to cirpofloxacin)

the bugs she had was citrobactor and ecoli for the first admission , then two pseudomonas infections , a staph infection and then the 5th one came back as mixed flora so we don’t really class that as a uti it was just a contaminated sample ( she has no symptoms I just got her tested). And we are currently waiting on results for this one.

Her VCUG test was pushed back multiple times due to her re infection, however we finally made it and it showed grade 5 in her right kidney and grade 3 in her left. She was then infection free for 12 weeks and doing great on ciprofloxacin combined with taking optibac probiotics everyday, and showering her everyday ( I never put her in a bath) change her constantly soon as she has a dirty nappy.

as soon as we suspect something with her we do a wee sample and we can take her straight to hospital to the triage unit to get it tested , we never go to the GP , always straight to hospital as things have suddenly moved very quickly with her in the past so we have open access to just come straight in.

what I would suggest is to get her onto probiotics daily , if she is 3 try and get her to drink cranberry juice as much as poss or even eat them ( I know they have a distinct taste, and she should be put on prophylactics to prevent infections based on what bacteria she has had before . I always make them retest her wee before coming off antibiotics, it doesn’t sound like they are doing enough for her if they keep coming back and only treating with oral antibiotics - @EllaF1410 has she had any more recently .

@Amethyst2502 how is your daughter doing now , has she had any more DMSA Scans ? We haven’t had ours yet it’s scheduled for October time given she stays infection free but we are expecting scarring to be severe.


hope to hear back from you x

[Wrongsideofpennines]

Just joining this thread as we have a newish diagnosis of this. It sounds like things have been a lot smoother for us than others though.

Our son had a fever and cloudy wee at 5 weeks old. GP was very casual about it and sent a sample off on a Friday and told us to wait a week for results. Unfortunately he deteriorated on the Sunday and was admitted with sepsis for 5 days and on IV antibiotics for e Coli UTI for 10 days. Now on prophylactic trimethprim but we're going to be cycling this with cefalexin. His VCUG showed grade 1 reflux on the left which was similar to the ultrasound and he will have the DMSA scan in November.

I was under the impression it was mild and he wouldn't be on antibiotics long but now I've been told he will need to be on them until he's at least 3 😔

I hope you're further on now OP and your daughter is receiving the correct treatment.