Long standing PUJ narrowing and reflux nephropathy 8 month old

[anonymous977]

Hello all,

I’m just writing to see if anyone is in or has been in the same situation as myself and I am not sure if this is the right place to post.

I am super worried about my 8 month old daughter. She developed a UTI recently, which made her very poorly and admitted into hospital, they scanned her kidneys and bladder, in which they said she has PUJ and reflux nephropathy. She’s now under the urology team at a hospital in London and waiting for a MCUG. She’s on long term medication called trimethoprim.
I’m just extremely worried and upset for her as she’s constantly in pain and has been poorly for the past three weeks straight. I really need to know there is light at the end of the tunnel. Thank you,

Infokid (https://infokid.org.uk/) is a very high quality resources. Sounds as if information is incomplete at the moment so the range of possibilities is very wide. Hopefully you will be able to talk through things with your specialist team, they also tend to have parent info leaflets and support groups.

Hi! How is she doing now? Was her PUJ picked up at preganancy screenings?

My son had severe one sided hydronephrosis which was first picked up on my 18 week scan. It got progressively worse but we were lucky that his other kidney was unaffected. He had been on trimethoprim since birth and until about 2yo. He had all of the scans incl mag where his puj was confirmed. He had a surgery to his ureter at 13 month old. Bounced back super quickly. The swelling of the kidney reduced but it is not a very healthy kidney as it only contributes 10% to overall kidney function.

He never had a uti, I think it is harder with girls in this respect.

If you at hospital, you are in good hands. If these antibiotics not working they should offer you something else? Do raise her pain with them.

It is a very common thing (like thr most common congenital deffect) and a lot of people have it. Most don't even find out until later (hiugh now the scans are so good thst I think it is being picked up more often).

@@Wobblyheart hello, thank you so much for getting back to me. She’s struggling to wee again so I’m currently monitoring her nappies and then will take her to see the doctor if this persists. Just constantly worried! ☹️ and no, nothing picked up during pregnancy with PUJ. I had a lot of issues with bleeding throughout and she had growth problems so scans every two weeks but nothing ever showed her kidney problem so this is all completely new.

Oh bless your son and yourself, I’m glad overall the swelling has reduced for him and also glad to hear he has a kidney which is unaffected, the same as my daughter, her left kidney is the one which is swollen so luckily she has one that is also unaffected. Did your son ever have less wet nappies due to the urine being trapped? My daughter has never had full wet nappies since birth and now I’m wondering if this could be why? She is drinking and eating fine and seems super happy now but I can see all the signs of a UTI starting again! I just hope hospital hurries with draining the urine and going from there as hopefully then she’ll feel better, bless the little ones.

thanks again for getting back to me. It helps to know someone else has been in the same situation but of course would be better if this wasn’t the case!

How interesting. I had bleeding early on and then he had stalled growth too. But his hydronephrosis was so severe it was easily picked up.

Oh no, bless her you are doing such an amazing (and exhausting) job carefully watching her and her nappies. Do absolutely take her to the hospital/ doctors so that they can help her. I think sometimes the utis csn be persistent little buggers.

No, I never noticed him not having full nappies. I mean there were plenty of times where there were not full but overall he had good output. I think it might depend on here the narrowing is and the physiology- I bet it differs a lot. So with my son his murine that wasn't properly draining was collecting in his affected kidney making it extremely swollen. I don't know hownit worked actually in terms of him naturally draining it all but he avoided utis on thrimethoprim and being a boy I think. After his surgery his affected kidney started drain better, it reduced in size though I believe it didn't go back to a normal size still but we were recently told we could stop trimethoprim. He has another ultrasound a few months ago but we still haven't heard from consultants on whether they are discharging him or if anything else is needed.

It's so incredibly stressful for you if she seems to be getting utis. I am sure once the plan is put in place things will start being better for you both. Do you know when she will be having her scans done?