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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

A should I push for kidney scan on toddler?

26 replies

Maddylee · 04/12/2021 10:34

Hello
My daughter recently had a UTI treated with antibiotics. A couple of months ago she had symptoms of a UTI. The first urine dip showed no signs of infection. Symptoms seemed to disappear. A week and a half later she was saying it hurt when seeing so took her for another dip. She was given antibiotics but when the culture came back it showed ‘mixed growth’. I am concerned about the length on this occasion it took to get antibiotics (a week a half) but not sure if it was an actual UTI. The dr doesn’t seem to think so. I am worried about any potential scarring to her kidneys and I am thinking about it a lot…

OP posts:
mdh2020 · 04/12/2021 10:41

Yes you should. My son had an undiagnosed kidney problem from when he was a toddler and had to have major surgery when he was 16.Before it was diagnosed he was in danger of dying from a ruptured kidney. He always says he wishes he could have had the operation when he was younger because then he wouldn’t remember it.

70sDuvet · 04/12/2021 10:55

I dont know how far you would get in the NHS with this especially atm and may have to pay privately, but if it puts your mind at rest then may be worth it. It would be an ultrasound scan so not hugely expensive

To put your mind at rest maybe a little. DS has complicated kidney problems and from weeks old he had multiple utis, on prophylactic antibiotics from birth (kidney issues picked up in prenatal scan) and continued to have multiple, multiple breakthrough utis and his kidney scarring has not got much worse. Also had infections lasting weeks until suitable antibiotics were found.

I think with only 2 so far I would definitely make your GP aware that you would like further investigation. But in the meantime no bubble baths, change all nappies very promptly even after 1 wee, no scented products/wipes and maybe wash her after no2s to see if it helps
Also try and slightly increase her fluids if she isn't a great drinker.

Maddylee · 04/12/2021 19:59

@mdh2020 that sounds awful and especially at 16 it must have been really stressful for him with school etc. That’s so scary when you think of what could have happened if it wasn’t identified. I’m glad he is ok now.

@70sDuvet your DS also sounds like he has had a rotten time too. I cannot imagine where it is like for them to have a UTI as a baby. I didn’t realise how common kidney problems were until I started reading up on this topic.

How would you know if there is any scarring - is there a way without having a scan?
What does ‘mixed growth’ mean? I read and hear conflicting things. The dr said it wasn’t an infection but online it could be?? I’m super confused

OP posts:
Justheretoaskaquestion91 · 04/12/2021 20:04

Have a scan. You need an ultrasound but that’s does not always show reflux so you will also need a DMSA. Push push push for it.

Justheretoaskaquestion91 · 04/12/2021 20:05

Sorry you will need a cystogram to show reflux and you need the DMSA for scarring.

Hospedia · 04/12/2021 20:22

Two or more UTIs in the space of six months is classed a recurrent UTI and the NHS guidelines on this state that a referral should be made for investigation. From recent experience, this would initially be an ultrasound to check the basic structure of the kidneys and bladder and that they're all present and accounted for. Further tests would then be directed by the results of the ultrasound.

Nomoreusernames1244 · 04/12/2021 20:27

Sorry you will need a cystogram to show reflux and you need the DMSA for scarring

You really want to put a toddler through a urinary catheter and exposure to radioactivity because she’s had a couple of UTI’s?

Go talk to your GP. Push for a Genitourinary referral if you must, but please listen, if you are being told it isn’t necessary, it isn’t necessary.

Even if there has been some small damage to the kidney, it’s unlikely to cause a problem. And the first step anyway would be a much less traumatic blood test for kidney function. That would show if function is impaired.

Most women have had multiple UTI’s at some point in their lives. Very very few go on to develop any renal issues.

Hospedia · 04/12/2021 20:35

You really want to put a toddler through a urinary catheter and exposure to radioactivity because she’s had a couple of UTI’s?

Trigger point for investigation is "a couple of UTIs" - two or more in the space of six months. Its not about checking for scarring as such (although this is important), its mainly about checking for underlying causes that could cause issues/are causing issues with kidney function such as duplex kidney, structural anomalies of the urinary tract, cysts that impede on kidney/bladder function, and so on.

First port of call would be the GP for a referral, the preliminary test is usually an ultrasound and then clinical decisions will be made on whether further testing is needed.

Nomoreusernames1244 · 04/12/2021 20:40

First port of call would be the GP for a referral, the preliminary test is usually an ultrasound and then clinical decisions will be made on whether further testing is needed

That was kind of my point. Get a referral and be guided by the clinicians. Telling op to ask for invasive tests from the off won’t help anyone, let alone the toddler in question.

Maddylee · 04/12/2021 20:51

She’s had a full blood count prior to all of this and everything came back fine.

Lathe dr isn’t overly concerned and said if she gets another one then they would consider further tests. But because the first was ‘mixed growth’ it wasn’t considered as a confirmed UTI even though she was given antibiotics prior to the lab results coming back because the dip test showed nitrates. I don’t really know if mixed growth is an infection or not. She certainly had more severe UTI symptoms second time around.

I don’t want to put her through anything unnecessarily as I have been told they would need to put her to sleep. And the radio active dye sound a scary.

Maybe I will ask for a blood test first.
Would it be that easy for the kidneys to scar after 1 possibly 2 UTIs?

OP posts:
Maddylee · 04/12/2021 20:51

Sorry for typo. I mean to write doctor isn’t overly concerned….

OP posts:
Justheretoaskaquestion91 · 04/12/2021 20:53

The point of the scans is more to find out the cause of the UTIs. I say this as someone whose baby nearly died of sepsis after having repeated UTIs (including breakthrough ones despite the permanent antibiotics he was on).

Kidney issues and UTIs are no joke. I would maybe wait for another confirmed one snd then push but I would certainly want some answers. Depends if she seems like she’s in discomfort or not.

Hospedia · 04/12/2021 20:54

How old is she? My DC has never had to be put to sleep for testing and that's from age 1 up to present (age 4).

Pythonesque · 04/12/2021 21:07

I am not up to date on UTI management in young children, but I do recall that some of the guidelines for prophylactic treatment and investigations were being relaxed some years ago, particularly for girls. In your position I'd probably talk to the GP both about whether referral is indicated now but also, what will be done if it happens again.

Having said that, how have the samples been collected? Some methods of collection are useful for dipstick tests but unreliable when sent for culture, and a "mixed growth" result can occur just because the sample culture was not a "clean catch" or similar specimen. Noone wants to arrange invasive investigations on a toddler unless they are absolutely necessary, but equally you don't want to miss a serious issue either. An ultrasound scan is only one of the investigations that might need to be considered if there is real concern.

Hope the little one is better quickly.

nervousfirsttimer1985 · 04/12/2021 21:23

My little girl is just turning 4 and when she was 9 months old she ended up in hospital due to a UTI. After this she was automatically sent for follow up tests (cystogram and Dmsa). Turns out she has reflux from both kidneys. Since then she has had a nightly low dose of an antibiotic. They haven't subjected her to more tests yet as they are giving her time to grow out of it and due to the invasive nature of the testing, they don't want to do them unnecessarily until she has had the time to hopefully grow out of it.
At the time of the first (and only) uti, I wasn't clued up on the long term effects, but now I know I am glad they sent us for the follow-up tests. I am not sure if different trusts have different policies, but that was the case for us.

Nomoreusernames1244 · 04/12/2021 21:26

Maybe I will ask for a blood test first.
Would it be that easy for the kidneys to scar after 1 possibly 2 UTIs?

She’s had a blood test? Or did the “blood count” not include kidney function?

Out of interest why are you so concerned with kidney scarring? What do you think will happen if they are?

Maddylee · 04/12/2021 21:43

@Nomoreusernames1244 she had a blood test for something else but this was prior to the first ‘suspected’ UTI. It checked for everything and the sr told me at that point that there was no issue with her kidney function. I have suffered from many UTIs myself when I was a young adult but I never realised that they could do damaged - very naive I know. Many times I would just drink lots of water and cranberry juice. Only once did I need antibiotics.

My daughter is 3 and never had a UTI prior. I am very confused about the first as she was in pain, but after the first dip it was confirmed it was fine no infection and from then on for a week or so she was ok. (I had to see an out of hours GP and the only thing I could find to collect the wee was a humous pot which I washed out before shams so I hope that didn’t impact the results!)
When I took back it was a proper sample pot. The nurse said it showed weak nitrates and we got antibiotics. When they sent it off it came back mixed growth. I was told at the time this meant no infection.

Then she’s had the second one but this has been confirmed to ah e had the E. coli bacteria so think this is poor wiping (another thing I feel guilty about)

I thought kidney scarring = impact on kidney function. I am concerned about the first incident when potentially if that was a UTI she didn’t get antibiotics for over a week. But for some days she wasn’t showing symptoms (second time around she was needing a wee every 10 mins and it was just a dribble)

OP posts:
Theluggage15 · 04/12/2021 22:31

When my daughter was two she ended up in hospital because of extremely high temperature and slightly low oxygen levels. It was due to a UTI. She was referred for ultrasound, the radioactive dye test and a voiding test. No scarring was shown and no structural issues. Her consultant said she would grow out of it as her ‘tubes’ got bigger. She carried on having UTIs which were immediately treated with antibiotics and they got fewer and fewer as she grew until stopping completely.

She is 25 now so things may have changed, but yes, I would be pushing for tests to rule any structural issues out. I remember reading up about it then and the rule was 2 in 6 months warranted investigation, my daughter being in hospital meant she went straight to testing.

Maddylee · 04/12/2021 22:41

I think they are ruling out the first ‘one’ as it wasn’t a confirmed UTI.
If there was something wrong structurally would’ve she have had more UTIs prior to now?

May I also ask for the children who had confirmed reflux or structural - when you had tests done for a UTI what bacteria was found? They have assumed the ecoli was from poor wiping but could it also be ecoli from a reflux issue? Sorry to ask I am just trying to understand is there is a way to distinguish

OP posts:
Flamingolingo · 04/12/2021 22:51

My youngest child developed a UTI at 3 weeks old and had a couple more as a young baby. He did have all the investigations, largely because he was extremely young, but turned out that everything was fine. So, yes, I think I would have expected you to have seen this previously if that were an issue.

That said, perhaps you should talk to the gp anyway. You could either just leave it now and if it doesn’t come back then don’t worry further, or have a quick chat about management and at what point the gp would be expecting to refer. We have sample bottles at home and an agreement with the surgery that we can just drop samples whenever needed, but we rarely need to anymore.

I think kidney damage is usually caused by reflux, i.e. wee flowing backwards, and the recurrent infections are usually a sign that urine is not leaving the bladder as expected.

MissTrip82 · 04/12/2021 23:00

It’s very easy for people to say you should ‘push’ for imaging when they have no idea what they’re talking about. You can see plenty of people replying with strong opinions aren’t even sure what imaging, what it’s looking for, and what the risks are.

There are guidelines on imaging in Paediatric UTIs; you can discuss them with your GP.

www.nice.org.uk/guidance/cg54/resources/urinary-tract-infection-in-under-16s-diagnosis-and-management-pdf-975507490501

Pawprintpaper · 04/12/2021 23:06

You’re obviously worried, I think you do need to speak to the GP again, but as you don’t sound like a clinician, I can’t see how you can demand specific tests or know whether they would be the appropriate thing to do.

Often medical testing is a process of elimination, often with standardised protocols and algorithms. GPs can refer for tests but they sometimes have to go through an approval panel at the hospital to assess that the patient meets criteria for an appointment.

I would see the GP, write down your concerns before the appointment, ask your questions and ask what the plan is from here. I would be tenacious and hold them to account but would be wary of telling them their job.

Justheretoaskaquestion91 · 04/12/2021 23:11

@MissTrip82

Are you reading the same post?! Most posters, including myself, have children who have had UTIs due to reflux and so definitely have experience in this area and know exactly what scans etc. My son needed an operation at 10 months old as his was so severe.

His bacteria was E Coli. You don’t sound very sure though OP so my advice would be to seek a second opinion.

Maddylee · 04/12/2021 23:18

@MissTrip82 thanks for the reply. My daughters second was ecoli but the dr put this down to poor wiping. I wipe her all the time at home so I suspect at nursery something happened whereby she tried herself it wasn’t supervised.
I just wasn’t sure if a dr could say an ecoli could definitely be put down to poor wiping and UTIs due to reflux for example could contain the bacteria.
I am trying to get her to drink more at home and educating about proper wiping. Dr wasn’t keen to follow up unless she had another confirmed UTI

OP posts:
ThinWomansBrain · 04/12/2021 23:51

suggest you read the NICE guidelines for treating UTIs in children.

google "nice guidelines uti children"