Hydronephrosis in 12yo dd

[WaltonOnNaze]

Dd is 12 and had hydronephrosis diagnosed antenatally, and a pyeloplasty as a baby. No problems since (discharged from urology clinic aged 6). She had a us scan last week for other issues and it showed severe hydronephrosis again. She had had a scan in summer 2021 which was normal so this has developed in last 18 months. She is now being urgently referred to paediatric urology but I am obvs v concerned. Has anyone had this - a surprise recurring hydronephrosis. What happened?

Hi, I am sorry to hear you and your daughter are going through this. My DS is also 12 and had the same issue antenatally and then had bilateral pyloplasty in Southampton aged 9 weeks; with follow up operations after kidney drainage (sepsis) and then cut out the bad bits. He had follow up scans and a few break through infections and was on antibiotics for first year to try to prevent. Last break through was about 2 years ago. He has also been recently discharged but hasn't had a scan since 2018; Dr said there would now be "no chance" of this happening again. Has she had UTIs since 2021 (do you dipstick urine at home and then send to lab?). I hope she is feeling well in herself. I am so sorry you are so worried, I would be too. x

Sorry just to add, having read my message I made it sound all about me and my DS which I really didn't mean to. I am sorry. I just wanted to share our similar stories. I do hope your DS is feeling OK in herself

Hi @slightlyslumamama no you didn’t not at all. I appreciate the reply. She actually had a second blockage at six months and a jj stent inserted then removed at 18 months but only ever had one uti (aged about 20 months). She had prophylactic antibiotics until she was two. She does have occasional nighttime incontinence hence the us last week to investigate that. But there have been no other UTIs or issues so it is a bit of a shock. I am quite stressed, and at the risk of sounding pathetic, it has brought back all the memories of the stress from when she was a small baby having operations. But mostly I am just concerned about why it has happened again and what this means.

Does sound very similar (they stopped the prophylactics for DS as they weren't stopping the UTIs); some of those antibiotic poonamis will stay with me forever. DS too has had some nighttime incontinence on and off until last 6 month or so (fingers crossed). So it seems no UTI identified last week which might be something positive to hang onto.

I am completely understand your feelings and it isn't pathetic, those times were horrendous and I am not surprised you feel as you do and it is triggering memories.

Did they give no indication of timeline? I would have thought they would push through for referral to ensure that they can investigate soonest.

Do you have urine testing kit at home if she starts to feel unwell?

Originally, I was told by consultant that there was a possibility of reoccurrence of PUJ owing to the tubes closing up again at the surgical sites and that DS should be scanned every few years up until late teens. However, paediatrician discharged him in October 22 as I said, because he thought this couldn't be the case now.

I completely understand your worries and sorry I can't be of more help. I hope you get some answers soon.

I completely understand 🌻
my DS9 had the same as a baby and has just been referred back to urology due to some urinary incontinence and feelings of his bladder not emptying.
It does worry me and bring back all the memories of his surgeries and worry his first year. Sending you hugs and hope for answers and a plan soon xx

Didn't want to read and dash.

I completely understand your worries and the awful memories that resurface and I hope you and your DS get some answers soon as well.x

Thanks both. No we never test urine at home and have never been told to.

re timeline. GP rang back after speaking to paediatrician at local hospital and said we’ll get appt this week and also bloods then they will decide what course of action and whether at local hospital or Great Ormond St where she was treated as baby (we are in London).

Good news they are taking action and a treatment plan won’t be far away.

wishing you all the best.

(we tested at home as so many breakthrough infections I think!)