Child getting UTIs

[DNAP]

Our 8yo has been plagued with urinary infections since before she was 2, and is currently on her 3rd round of antibiotics in 2 weeks, for her now 28th culture proven infection. This particular one is a proteus infection, but she's had everything from klebsiella to multi resistant e-coli, and has been hospitalised a few times with pyelonephritis. Even when they are not as serious as this, they are still exhausting for her. She's now had 2 weeks of waking 6 or 7 times a night, severe incontinence, leaks foul smelling urine all the time, and is generally just miserable and very fed up with it all. If this antibiotic doesn't work, she'll have to have an IV antibiotic to clear it, which has happened a few times now. Does anyone else have a child with frequent UTIs? And how frequent is too frequent? Although she does have another health issue, the general medical consensus, is that they don't think it's related in any way, and that some kids are just prone to them. We just can't accept this, it seems insane that a young child can notch up 28 full blown UTIs, and nobody can help her or tell us why?!
Does this really seem reasonable or should we be kicking up more of a fuss than we already have?

I am no expert but my DD had frequent nasty UTI's from about 3-6, she'd suddenly loose bladder control and be vomiting until there was just bile, antibiotics always quickly cleared it up though so not as serious as your DD's
At age 6 she had a scan (I can't remember the name of it but she had to drink stuff to make it show up on the scan) they followed the progress of it through her system because they wanted to check if she had any kidney, bladder, extra ureta's, urethra issues etc. Turns out her urine had been refluxing back into one of her kidneys, damaging it.
She randomly grew out of the UTI's but has been monitored ever since due to the damaged kidney, it's now better than it was and despite its initial small size compared to the other, is catching up well - my DD is now 13.
To be honest, with your DD's history, I'd be pushing for more tests now, poor girl must be miserable, UTI's are horrid

Have you looked into D-mannose? I know it helps a lot of people with e-coli infections.
There is a newish theory that the bacteria never really go away and hide in the wall of the bladder where they form bio films to protect themselves, and re-emerge frequently. I think this is treated aggressively with long term antibiotics.
I would bring this up with an urologist.

Thank you Redgrape, yes they tested her for reflux a couple of years ago. She had the VCUG and although it showed delayed clearance on one side, this cleared when she stood up. Not sure if this was relevant in any way, but from a reflux perspective, they know it's not that. One of her kidneys functions less well, currently 40/60, so in that sense, they seem quite relaxed about it, but of course as a parent, it's not that easy!

It's genetic.

academic.oup.com/jid/article/195/8/1227/818893

Thank you, yes I'd heard of D mannose, but everything points to it being effective for specifically e-coli infection, and she gets a wide spectrum of bacteria, not just e-coli.
The bladder theory sounds very plausible too, particularly as her infections always seem to re-emerge quite quickly. However when we asked about that, we were told that as she had new infections with differing bugs, and not just the same bug re-emerging, that was unlikely to be the answer. Having said that, she had a 7 day IV last year, and it kept her clear a lot longer than the oral antibiotics. So I'm sure it must be more plausible than they think! It's very frustrating not knowing why. I know some kids do get recurring UTIs, but this just seems way too excessive!

I take it she has had renal scans? Poor girl. It sounds awful. My DD now 4, had a severe kidney infection at 2.5 and was thought to have a duplex kidney but when they operated they found it was something called a hydrocalxyxosis - v rare but can cause multiple UTIs. Really push for something to be done - there must be something causing it and there must be something that can be done.

And neither me, my sister, mum or aunts..in fact nobody in our family, or DHs.. has ever had one single UTI..so it's definitely not something she seems to have inherited.

I had a problem as an adult with an deep rooted infection that recurred every fortnight for a year or so. I had every test in the book with no explanation. I was seen by some one who'd worked with James Malone Lee in London. He did loads of blood tests and recommended 8 weeks of antibiotics. Since then I've had 2 in 15 years...
I don't know if he still runs a clinic, NHS or privately, but you might find a doctor who worked with him.

It doesn't have to be apparent in the family tree as recessive genes sometimes lie dormant for generations.

As an adult with frequent UTI's, and pyelonephritis so bad that I ended up in hospital with sepsis, I honestly feel awful for your little girl. Please push for more tests! I feel so dreadfully ill when I have UTI's and before I was catheterised it was horrendously painful urinating!

My little girl had frequent UTI's after she started pre-school. She was referred to paediatrics and had several scans of her kidneys. Luckily it was caused by my little girl not wiping properly (my little girl has coeliac and unfortunately can have messy poos if she accidentally ingests gluten). We took over wiping when she had poos and was at home and wiped her as soon as she got home from pre-school. This stopped her getting them. I spent ages teaching her how to clean herself properly, (front to back) after the toilet, she is eight years old now and it wasn't that long ago that she stopped needing help. We bought her the fragrance-free/ sensitive moist toilet wipes for children and she has been independently wiping since.

I have spent a lot of time researching how to prevent UTI's and during this research, I read that it's possible for the bacteria from the urine to spread and infect others via the toilet. There was a case of two older sisters, one went to stay with her sister to look after her, as she had a severe kidney infection. Whilst there, she contracted a UTI which went into her kidneys, unfortunately, this turned into septicemia, they were unable to find an antibiotic the infection was resistant to in time and unfortunately, she died. There was an investigation and they found the infection responsible was present in the sister's toilet bowl, which they concluded was how the sister contracted the urine infection. Having read that, and surmised that this may contribute to re-infection, I started to use Dettol all in one disinfectant aerosol spray regularly on the toilet, before and after each time I use the loo. I also use sensitive Dettol soap and wash down below with that, I use disposable dry wipes instead of a flannel or louffa to limit the chance of re-infection. This seems to be helping, unfortunately, I am still prone to them due to long-term catheterisation but I have had long periods without infection which considering I was constantly fighting uti's for over 8 months straight last year is amazing!.

I would also make sure that your daughter's underwear and towels are boil washed to kill the bacteria. Your poor little girl, I know how embarrassing the horrid sulphur/ rotten egg smelling urine is too. Have you had any support from ERIC the children's continence charity?

www.eric.org.uk/

They were very helpful when I contacted them with support for my autistic ds.

I hope you dont mind me linking to some of the things I have mentioned I use to prevent re-infection.

firstly the soap I wash with below

www.amazon.co.uk/Dettol-Soap-Sensitive-100g-Pack/dp/B00BNU08WQ/ref=sr_1_1_a_it?keywords=dettol+sensitive+soap&tag=mumsnetforum-21&ie=UTF8&qid=1517271244&sr=8-1

the spray that I use on the loo, before and after using.

www.amazon.co.uk/Dettol-Disinfectant-Spray-400-Waterfall/dp/B0080N3IRQ/ref=sr_1_1_a_it?keywords=dettol+disinfectant+spray&tag=mumsnetforum-21&ie=UTF8&qid=1517271305&sr=8-1

wipes to use instead of flannel/ louffa when washing

www.amazon.co.uk/Conti-SoSoft-Heavyweight-Patient-Cleansing/dp/B00J3UMQXC/ref=sr_1_3_s_it?s=drugstore&keywords=dry+wipes+personal+care&tag=mumsnetforum-21&ie=UTF8&qid=1517271385&sr=1-3

moist toilet tissue for cleaning themselves properly

www.amazon.co.uk/Pampers-Kandoo-Flushable-Toddler-Sensitive/dp/B00TOZ44CM/ref=pd_cp_75_1?psc=1&_encoding=UTF8&tag=mumsnetforum-21&refRID=C3QA99BF7NAGXKYYG1FT

www.amazon.co.uk/Sensitive-Moist-Softlets-Flushable-Wipes/dp/B071V4V8LZ/ref=sr_1_5_a_it?keywords=sensitive+moist+toilet+tissue&tag=mumsnetforum-21&ie=UTF8&qid=1517271698&sr=8-5

we get ours at home bargains, which is cheaper.

I also advise drinking as many fluids as possible, just water mostly, as juices etc can contribute. Another tip was to get your dd to lean forward after peeing to make sure she is completely empty. Good luck, my heart breaks thinking of your little girl going through what I go through! She sounds incredibly brave!

Oh, and Proteus, Klebsiella, e coli, salmonella and shigella all belong in the same family of bacteria called enterobacterie. They are kind of similar and quick to develop resistance.

My dd does, she's 5 and for the last year and a half she has frequent uti's.
She has scarring on her kidney we are currently waiting for a Dsma scan but she needs to be 6 months clear of infection, so far she's only been 1 month max. It's so horrible, she gets so embarrassed by it especially at school. She gets thrush nearly every time too. She doesn't have any pain luckily but she does have accidents as she doesn't know she needs to wee until it's already happening. Like your dd she wets the bed a lot too.
We do have scans and consultant appointments, her urine has to be sent off every time and she has had several of the e-coli strain too. I feel like we're getting no where with it all, every month we're buying new school shoes because her urine smells awful it's so strong and quite an unusual smell I can now tell she has an infection just by the smell.

Poor thing! They are so painful! I'd just throw everything at it, sceptic or not -D Mannose, cranberry capsules daily even when she hasn't got one, cut out other fruit juices, tomatoes from diet. Anti-bac around the bathroom more, avoid baths in favour of showers, up water intake and encourage her not to hold her pee for very long. Make sure pajamas etc are regularly changed if not worn with underwear. All the little things.
I am prone to them. My 2 year old started getting them when she started pre-school (fucking ridiculous to expect them to wipe themselves at that age). Horrible knowing what she's going through.

My dd had constant UTIs from the age of 5-12. She had probably about 20 courses of antibiotics, as well as various scans. No physical problem/reason was found. She’d take the antibiotics and the infection would clear up, but as soon as she finished the course it would come straight back again. In the end I said no more to the antibiotics, she was getting resistant to more and more types and it was clear they weren’t going to help. Her wee smelled terrible (fishy) and she would leak urine and have to wear pads every day. She didn’t become ill or have any pain though. The consultant said sometimes this just happens, and often the child ‘grows out’ of it at puberty. Right enough, not long after she started her periods, I noticed the smell had gone and she’s absolutely fine now. Sorry your dd is going through this, it’s horrible.

Thank you for all your comments, and thank you for your helpful post Caledonian, much appreciated.
Our daughter toilet trained really quickly and has always been quite diligent about bottom wiping. We became so convinced it must be that, that we did it for her for years. We use gentle wet wipes, and always wipe towards the back, and she rinses regularly. I'm a bit of a clean freak too, she has severe allergies, so dust is our enemy in this house, and our toilet seats are disinfected pretty much daily! In fact she's had so many issues over the years, that I've become much more paranoid about cleanliness than I ever was!
She's had three rounds of urodynamics, but not the invasive form, so they have never actually looked inside her bladder etc.
Her voiding functions were all deemed completely normal, and there was no residual wee left after emptying. We have grown tired of the drink lots advice, she has grown up drinking water like no child we have ever known, and has the quantities of pee to prove it!
I have also been thinking what would happen if we just stopped treating her with antibiotics every time, but I think given that some of her infections have been more serious or resistant, (i.e pyelonephritis, febrile etc..and one infection had spread to her bloodstream), they seem quick to treat, which I know makes sense, but I wondered if perhaps she would fight them better herself, as she gets older. It's interesting to hear OhSh, that your daughter eventually grew out of them. I agree, it is very distressing for them. She is completely continent normally, but becomes completely incontinent as soon as it creeps back. Leaks in her bed and her clothes, and the smell is appalling at times. In fact, we can often guess the bug by the smell! The fishiest by far is proteus, followed by ecoli, enterococcus has no smell at all, and klebsiella just smells plain weird.
She's had a couple of ultrasounds, although the last one was four years ago, and I'm not sure if ultrasound is very effective at picking everything up. We went to see a urologist privately two years ago, and he said she needed a CAT scan, particularly as she has proteus infections, but as she's had to have other cat scans and numerous X-rays, in relation to her other issues, they came back and said it was unsafe to do this, so it never happened. In the end he said, she was too complicated, and he felt it was best managed by her paediatric team in conjunction with her other issues. But of course, every consultant has their own speciality, and in the scheme of things, the impact of her UTIs, simply gets overlooked, and that's when you get the 'some kids are just prone' kind of comments, which really doesn't help at all. So here we are, nearly 8 years on, and still none the wiser Thank you all for your suggestions x

I had frequent UTIs as a child and had various scans and x rays which identified duplex kidney and extra ureters. Did her scan confirm no structural issues such as those?

Re the DMSA scan Liv4537, we too had this issue. She had one when she was 5, and the scan kept being put back, as she couldn't stay infection free. She was on prophylaxis too, and still had breakthroughs. In the end, her local paediatrician, had to ring through and say she had to be seen. There were no obvious signs of scarring, other than a tiny area on her right kidney, but her function was more disparate than that suggested. They were surprised, given how many infections she had already had by then, but said this must have been because we were acting quickly, or it could have been quite different.
I would press to get a date Liv, or the wait could be endless! Good luck x

Apparently her structure looks fine, but we were told that ultrasound is not very effective at picking up some issues, and CAT scans are far more effective in that sense. Unfortunately the radiologists are not too keen, as she's already had quite a few.

I guess if she at least gets some temporary relief from antibiotics it may be worth persevering with them, for my dd it would come back immediately after the course finished so there seemed no point.

It’s such a horrible thing for a child to suffer with, my dd was bullied and had to leave one school because of it, she smelled awful despite changing her pads several times a day. And if there’s no obvious physical cause, all they have to offer in the way of treatment is antibiotics. It’s so frustrating. When the consultant said she was very likely to grow out of it at puberty I thought ‘yeah right’, and so was amazed when she did. No more leaks, smell or bed wetting, it just stopped seemingly overnight. Fingers crossed it will be the same for your dd, although I realise puberty probably still feels a long way off for her.

My daughter has a UTI at the moment. She was diagnosed with a duplex kidney at birth. She is under a specialist but at our last visit said he would sign her off as she hadn't had a UTI for 2 years and all her scans showed things had pretty much resolved. One kidney is smaller than the other but is functioning. Now she has this UTI. She is taking Trimethoprim and I am not sure it is working this time. Waiting for the culture results to see what they say. Feeling worried.

Oh I should have said she is 10 years old.

Thank you OhSh, I very much hope so! It seems recurrent uti is a not too uncommon scenario for some kids, but the people I'd heard about, had maybe 2 or 3 and that was it. So it had me wondering just how unusual it was to have had 28 infections by the time a child was 8 years old.
AVL, Did your daughter suffer many infections when she was younger? We've often found trimethoprim as a first line to be quite ineffective, I'd say roughly half of her infections had culture sensitivities that were resistant. I hope your daughter improves soon, sometimes it can take a couple of days to really improve, so hopefully she will soon. Thanks for all your replies!

Hi, yes my daughter seemed to have quite a few infections when she was younger. Although she had symptoms but the tests would come back negative. They used antibiotics anyway and they did the trick. This time we took her in Monday with symptoms but they didn't give antibiotics as they thought it could be something else, the dipstick was negative. Tuesday we took her again and this time the dipstick was positive so got antibiotics. So all the negatives before could have missed the previous infections being too early, the cultures also didn't show anything. Still waiting on results from GP to see if anything grew this time. Will see if they will give me another antibiotic anyway as she is still having symptoms. She hadn't had a UTI for two years and her consultant was happy. I thought we were over this. It is such a worry.

She needs to drink loads of water and wipe from front to back.

OK, so my daughter had all the symptoms, with the dipstick saying blood and white blood cells. But the culture was normal. Confused about this. Going to get a print out of the report to give to her consultant and ask about this as not sure what this means. Has anyone else had this? She has a few UTI's in the past, the same, with symptoms, but they never grow anything significant. Her consultant in the past has said she hasn't really had a UTI, but what else could it be? This time we did have the positive dipstick.