Duplex kidney, dilation and reflux

[Waffle12]

Hi all

Am just wondering if anyone is or has gone through similar. Sorry for the long post.

20 week scan showed dd had duplex kidney and renal pelvic dilation. This was monitored through pregnancy and the last scan showed dilation was 19mm I think. They said that she may be susceptible to uti's, but equally there may not be any issues.

The plan was to put on daily trimethoprim from birth, and carry out ultrasound and kidney scans once born to get the full picture.

Trying to cut a long story short:
At 5 weeks dd got a high temp. Took her to a&e on instinct, and turns out she had a uti. Crp markers were 150 and she was classed as having sepsis. 2 nights admission and 5 days worth of iv antibiotics.

They changed her normal daily antibiotics to cefalexin, but due to a national shortage had to revert to trimethoprim.

All was good till start of December at about 14 weeks old. Got a temp again, called the ward as we now have open access and went in. Another uti! Crp peaked at 106 this time. 5 days of iv again.

Was told we had to change to cefalexin and managed to secure 3 months worth from hospital.

Consultant seemed sure this would help, but ended up in hospital again yesterday at 18 weeks old- another uti. Crp at 67 but could peak higher still. More iv antibiotics.
Now worried the cefalexin isn't working! She did have a catheter put in for a scan the day before, so that could be the reason for the uti, but would have thought any bacteria would have been killed off by her daily antibiotics.

Scans so far showing that the duplex kidney is struggling a bit to drain at the top, and looks like bottom half has reflux. She has been referred to great ormond street.

I am finding this all so stressfull and am constantly worried about her. The only sign we have had of all 3 instances was a raised temp, and the infection takes hold quite quickly. So basically having to watch her like a hawk, and rush her in if she gets a temp. It's really exhausting. I am having to do all the hospital stuff on my own as ebf, and dh looks after older dd (4)

I am not looking for any medical advice, but just wondered if anyone else was going through this? What happened? Any advice? Did they get better as they got older? (dd is 4 months)

Thank u for reading.x

Awww op hope your ok, it all sounds exhausting and you must be worried. Sounds like the hospital have been brilliant though and she's having great care.

My experience is from my nephew who has one duplex kidney. This was picked up via similar circumstances when he had a UTI and luckily the GP referred him for a scan. It wasn't until he was about 3 months old though (not picked up during my sisters pregnancy!). They said he wouldn't require any further checkups.

Anyway, he hasn't had any more infections since the initial one but has suffered with bad reflux so he's had to stay on a complete dairy free diet to manage it and she was using gaviscon for him too every day as he was really struggling.

Fingers crossed your daughter finds the best medication - good luck op

Thank you for responding @wineandsunshine

So glad to hear your nephew has not had any further issues since his 1st infection.

I keep hoping that the latest instance is the last, but not looking good as she has had 3 and she is only 4 months old. Trying to stay positive, but it's so hard. I know this is nothing compared to what some people go though with their children, but it's all relative isn't it.

The hospital have been amazing and cannot praise them enough. Really helps that we can call the ward direct as well rather than havjng to go through a&e or the dr.

Oh your welcome! I know how worried my sister felt.

I'm glad to hear the hospital have been brilliant, I can't fault the NHS! Hopefully GOSH will be able to answer any questions you have and/or have different things to try. Fingers crossed as she gets older it doesn't effect her.

Sending big hugs op x

Hi Op,

I have no advise as I'm currently 27 weeks pregnant and last week both kidneys were measuring 14/15mm but we are due to have more scans.

The doctors seem to give hardly any info saying it could be something could be nothing but that it's rare that both are enlarged.

So just a hand hold to say your not alone

Oh @busylifebusywife so sorry you are going through an uncertain time with your little one.

Fingers crossed its nothing to worry about. I know from what the doctors told us that there are certain things with the kidneys that can correct themselves either later in the pregnancy or shortly after birth, but it obviously depends what it is.

Big handhold right back. My only advice at this stage is to stay positive and find out as much as you can from the doctors/sonographer. Ask whatever questions u need to.

Have u been assigned a specialist doctor to review the scans?

It's really hard hearing that there could possibly be something wrong with your baby as u just want everything to be perfect dont you. But try not to worry too much until you get some definate answers. And if there is something, at least they will know about it from the start and be able to put a plan in place from day one.

Fingers crossed for your little one and big hugs.x

OP I have a duplex kidney, and I only found out last year... I'm 36 and I've been okay so far x

I have a duplex kidney and only found out when I was about 18. I've only ever had 2 UTI's in my whole life and they were at the beginning of my pregnancy and symptomless.

Thank you @Cheesey21 and @Hotpinkangel19

It's good to know that these things can be relatively problem free.

We got the results back from the urine cultures and it's quite a rare bacteria that has caused this. That coupled with the timing of the catheter, the consultant is putting money on it being the catheter procedure that caused it- although we will never know 100%. Sounds strange, but I am hoping it is, as that means there is a specific reason for her getting a uti, not that she has just had another random one just due to her condition.

Really hoping that this is the last time. I cant bare her being I'll and having so many needles in her. She is very difficult to canulate, and often even if they do get one in, ot stops working after the first day. Had 4 days of iv antibiotics so far this time, and so far 6 canulars or attempts to get one in :-(

Sorry-just had to vent a bit

Thank u all for your replies.x

My DD has this. She had a series (or perhaps one long lasting infection) for about 12 months when she was 3, that's how she was diagnosed. She was put on trimethoprim for 18 months and then taken off it a year ago. She hasn't had any infections since the original ones. She is being monitored yearly and is doing well. The consultant thinks she will need lifelong follow up but maybe not any further treatment, it will depend on her yearly bloods etc.

OP I sympathise about the cannulas. They always struggle to find veins on DD. The last lot of bloods they took from the top of her foot. It was awful for her but it meant they only needed one go.

Thank u @imaflutteringkite

Glad to here your dd has been able to do without the antibiotics-thays brilliant.

Could I please ask why they decided to stop the trimethoprim after 18 months? Did they see a specific improvement in her kidney as she got a bit older, or was it just down to the fact she had been uti free for a certain amount if time?

DDs duplex kidneys (she had double full plumbing on both sides) was picked up at about 7 months, she had recurrent UTIs due to reflux and pooling. She had corrective surgery when she was about 18 months and since then has pretty good function (she's nearly 30)

She is still prone to UTIs but the signs get picked up on quickly by her carers and she goes straight onto antibiotics each time (She is non verbal and lives in a specialist unit due to her learning disabilities - her kidney problems are purely incidental not connected in any way)

Whilst her having surgery was hard for us all, it was straightforward and she was in hospital for about a week in all, with follow up scans for a couple of years afterwards.

Best of luck to you and your little one x

Thank u @Wherearemyminions

Wow 2 duplex kidneys!! That's really reassuring to know that surgery went well and has improved things. We have been told that surgery may be an option somewhere down the road as she has reflux on the bottom half and possibly an obstruction on the top half leading to the poor draining.

Good to know her carers are so on top of things and recognise the symptoms and get her treated straight away.

Thank u for sharing your story.x

Hi OP - didn't want to read and run. We didn't have duplex kidneys, but we did struggle with a UTI-prone baby who spent the first six months on trimethoprim (all that happened there was that he developed trimethoprim resistant UTIs instead). We were lucky because it turned out that there wasn't a specific reason for his UTIs and he hasn't had any now for a couple of years (he's 3.5). I do remember it being really worrying though, and I think the only thing you can do is have a really low threshold for taking a urine sample to the GP - every fever if it makes you happier, ours were always really good about quickly dipping a sample for me, often without an appointment. They might also allow you to have some dipsticks at home, because if caught early enough then oral abx should be enough.

Ultimately, my understanding is that if they can't get the infections under control then they will consider a surgical option. The paediatrician we saw (at Southampton Children's Hospital) seemed fairly relaxed about UTI-prone children, and said she had many many on her books. It does seem to be a watch and wait kind of thing, partly to see what happens, and partly waiting for them to be big enough for surgery to be effective. We had to wait several months for DS to be big enough for a specialist scan called a MCUG where they do a live x-ray with dye to see the extend of the reflux to the kidneys, perhaps you've already had one, or are waiting for one?

I do agree that the catheter is the most likely source of the most recent infection, which is perhaps comforting. Other obvious things that I'm sure you're doing are things like having a really low threshold for a nappy change, not waiting even a few minutes after a poo if at all possible (and it's not always possible).

Hopefully your appointment at GOSH will come round quickly and you can be reassured by their plan of action.

The answer to your question about coming off the trimethoprim is one I think I might have an answer to - back when we were having tests done the paediatrician discussed a plan where my DS would stay on abx until he was dry at night as this seems to be a further risk factor for developing UTI in prone children. I think most adults with reflux (and it's not that uncommon, many people don't even discover it until later) don't have to take the prophyliactic antibiotics.

This is an article talking about recurrent UTIs in adults, and taking longer-term antibiotics (at therapeutic and not prophylactic doses). I've no idea how this translates into children and recurrent UTIs but it might be a conversation to have at some point with her drs if you feel it would help

www.theguardian.com/society/2019/feb/20/in-pain-all-the-time-will-there-ever-be-relief-for-women-with-chronic-life-changing-utis

She came off the trimethoprim after she'd had a period without any uti's. I think it was 12 months free but it might have been 18 months. I'm so paranoid though, everytime she's ill I panic it's a UTI as she typically doesn't show any symptoms and is just a bit off colour.

So dd is now on her 4th uti!! Was cranky on sat, then started with a temp yesterday. Trusted my instincts and took her in again and sure enough looks like another one (waiting for urine cultures to come back to confirm what bacteria it is).

I am getting so disheartened. I was hoping that the periods between uti's would get longer, but this is her 3rd one since beginning of december and 4th one overall! She is only 4 months old.

They havent checked crp this time, and instead of the usual iv antibiotics, they have advised us to increase the dose of her daily antibiotics-so at a 'treatment' level as opposed to profalaxis level. Wasnt her normal consultant that we saw, and the one we did see could see her history. Just a bit worried that the treatment is different this time. Have left a message with her consultant to talk it through and just waiting for him to get back to us.

I really appreciate all the replies so far.

Anyone actually going through something similar at the moment?x

Hi op,
I'm going through slightly similar at the moment in that I'm 30 weeks pregnant with dd with suspected duplex or more likely cystic dysplasia as right kidney is showing very abnormal and with what looks like cysts at the moment, been told that until she born we won't really know what it is exactly but will need to go home on the same antibiotics as you do it's interesting to hear about the recurrent Utis as worrying about that. Me too wondering when and how they know if to stop this! We not sure if she will need an op either it's all waiting! Also mentioning possible genetic links as she also very small. I agree is so stressful and like you keep trying to get as much info as possible!

Hi @fingerscrossed27
Sorry that u are going through all this uncertainty with your little one at the moment. It's so hard not to worry isn't it, and not to know exactly what to expect. It's good that it has been picked up on though so they know from the outset that ur little one will need a little extra care and attention.

We got the results of the urine culture today, and actually although it looked initially like a uti, they have now confirmed it isn't!! She must have just had a virus. But they said we did 100% the right thing taking her in given her history. So we are back to her having 3 uti's but only 2 definately caused by her condition. Desperately hoping she gets a break now.

Definately get all the info u can, and dont be afraid to ask any questions u can think of. Thank u for replying and here if u need a chat.x

@Waffle12 hope you are child is doing well now !

I am on a similar boat with multiple utis in a month. Baby has renal dilatation and my pediatric team are not responding to my calls. I felt so lost and depressed

Hi @Sunnylily

I'm so sorry you are going through something similar. It's very worrying isn't it- especially when they are so small.

I can tell you that my daughter ended up having 2 operations at GOSH. The first one was a conservative one which took away the bit of the kidney that wasn't working and the extra tube in the hope that it would work, but unfortunately she got more uti's so she ended up having the second one. The second one was more to do with her bladder as she had reflux there aswell which was a bit more unusual and all linked to the duplex kidney as the tube that was left joined the bladder too far down .

And i'm happy to say that worked brilliantly. She has not had a uti since (she is now 6) and has been signed off completely from GOSH and our local hospital.

That's awful they are not responding. Is there anyone else you can go through or if you are in the UK can your GP help to chase?

Thanks very much for responding xx really appreciate it !

I have already asked my GP to follow up with my hospital. The hospital has given an appointment in February end. Meanwhile worried if he is developing another round of UTI.

We have referred ourselves to GOSH - self funding. It's bit tight for us as we are paying. We are kind of lost in the nhs system.
Do you have any idea how I can expedite the process with NHS ?

The initial plan was to be referred to GOSH( by the postnatal pediatric team) instead of my local hospital urology team. But something happened in between and we are being looked after by our local hospital urology team and the doctor is not even a pediatric urologist. He is urologist for adults.