DMSA and MCUG tests for 6mo, I have reservations

[CBear6]

DD was in hospital last week with a UTI. It was her first ever UTI, she responded well to IV antibiotics, and she's back to her usual chipper little self. She has three days of oral antibiotics left to take.

We have a follow-up appointment on Friday where they want to do a repeat blood test and urine test to make sure the infection has cleared up. At this appointment they want to book her in for DMSA and MCUG tests - details of them are here on the NHS website

I'm concerned that she doesn't fit the criteria for 'further testing', also the doctor half-explained the two tests when we were discharged on Friday and left out lots of the detail I read on the NHS site. I'm concerned that these tests aren't entirely necessary given the lack of recurrent UTIs in her medical history and that they're overly invasive for very little gain (even if they did diagnose a problem the majority correct themselves with no treatment).

Am I over thinking it? Has anyone got DCs who have had these tests? I don't have a lot of confidence in the hospital where she was admitted, the same hospital where her follow-up appointments are, and they have a history of not giving the full story and omitting information until after the fact (something we found through personal experience and from reading results of patient surveys). Ideally, if she needs the tests, I want them done elsewhere but I don't know how to go about requesting that. When she was in this hospital in November (with bronchiolitis) they wanted to do a test and I refused as they said it wouldn't change the course of treatment or duration, I felt it was testing for testing sake. One of the nurses pressured me for several hours, popping in and out of the room, repeatedly asking if I would 'do what's best' and change my mind, making sly comments, telling me awful stories, etc until I agreed that they could do it. Is it just as simple as saying 'I want to go elsewhere and I won't agree to the tests until I get a second opinion'?

[kulikova]

Hello ! Did you have those tests in the end ? I appreciate it's been 4 years ago but maybe you remember ? I am having the same dilemma with 16weeks old. DD 1 had UTI at 5 weeks , it was horrendous. Until they found out the cause of her fever they put poor thing through lumber puncture as well as 7 days of antibiotics. We had follow up kidney scan 3 weeks ago and it was normal . Saw paediatrician yesterday , that's 2 months after UTI , and she thinks DD should have both tests . I would like to get maybe a second opinion as not sure if those tests are a must have and what are the risks if she does not have them ... just too invasive the tests are . How did you go about them ?

[Starsandcars9]

Not for uti but my dd had the Dmsa for her kidney - was fine. The putting the cannula in for the dye was the most distressing bit. The test itself was about 40 mins and she was strapped in to a big MRI type looking machine. I could sit next to her though and touch her etc. they had a big tv above her which played teletubbies.
If the docs are recommending it I would do as I've found they generally don't recommend tests in babies and children unless they are really needed.

[Starsandcars9]

Although having said that second opinion good as I have found docs do have different opinions! Can you ask more why they think required?

[Starsandcars9]

Was her kidney function always normal or are they worried about damage?

[Starsandcars9]

Ps I would ask dr to explain more why required to you and then you can sense check if sounds right or not. You can challenge them to explain to you if you don't agree.

[kulikova]

Thank you for replying . My DDs kidneys were fine as we had two scans , one when she had UTI at 5 weeks and one as follow up app in st Thomases .

[kulikova]

I have booked GP next Friday to take DDs urine sample as the paediatrician advised . I will ask GP how I can have a second opinion on that . Also will try to arrange anther chat with the same paediatrician to ask what are the risks not having those tests . I did ask why she thought my DD needs the tests and she said because she had UTI at 5 weeks and they recommend those tests to babies who had UTI before 3 months age. I think it's just eliminating all
risks - that's their standard approach . They put DD through lumber puncture when she had UTI just because they were concerned she may had miningites as high fever and they were trying to diagnose... it wa very distressing and I did not want to have lumber puncture but they scaremongered me and I gave in . Could be the same now - eliminate all possible risks approach .

[kulikova]

Of course I have an option not to do the tests she said but I did not ask the question on what are the risks if we do not. Hard to think of everything when you have just been giving info. I got back home and only then read up on the tests .

[kulikova]

By the sound of it you had MSUG not DMSA though . And you only had one UTI right

[Starsandcars9]

Dmsa but no utis - ours was for kidney damage over something else. The lumbar puncture must have been distressing but at 5 weeks old it must have been really hard to know what was up with her - meningitis could have killed her so they weighed up the pros and cons. Luckily she didn't have it. Distressing but a good outcome. She's older now so these tests are most focused - you need to seperate out your distress over what happened at 5 weeks and now.

[IwillrunIwillfly]

The reason they want her to have the other tests are to check the kidneys are working properly. Nice guidelines recommend them in all young children with uti's. They need to check they the infection wasn't caused because the kidneys aren't working properly.

During the mcug, they use a small catheter (plastic tube) to put some fluid into the bladder and check that there's no kidney reflux (where the urine goes from the bladder up to the kidney. It should only go one way). In the dmsa scan they put a small cannula in and give a dye into her veins. They then scan her kidneys to check they are working properly in filtering the blood. The dye allows details to be seen that won't be seen on a normal ultrasound scan.

The risks of not having the tests are that an underlying cause for her infection could be missed or damage caused by the infection could be missed that may need further treatment. The ultrasound scan she's had will only be able to see that she has 2 kidneys and that they are a normal shape and size etc. The other scans give much more detail.

The reason they will have done a lumbar puncture is because that's what is advised in all babies under 6 months with a high temp without a clear source. Its part of a full septic screen where they basically look everywhere for possible infection (spinal fluid, blood, urine, throat etc). Infection can spread very quickly in babies from one area to another so its important they fond out exactly where the infection is. Where the infection is also determines how long the treatment needs to be.

Hope that hellsna bit but if you have more questions its absolutely fine to speak to the Dr again. You should be able to be confident in the plan for her treatment.