Recurring UTI in 6 yr old DD - desperate for some help

[igetmorelovefromthecat]

My 6 year old dd started having smelly wee back in March (a very strong smell of fish). I did some research on the net and realised it was probably a UTI, took her to docs and it was confirmed to be just that. Given antibiotics, i don't really like the things as I have had a terrible time in the past with doctors overprescribing them to me and making the infection resiliant, but I gave them to her, and they did work in that the symptoms disappeared for about a week then came back again.

More, stronger antibiotics prescribed and doc assured me these would do the trick. Exactly the same result as previous time, it came back after a week. She was sent for a scan at the hospital and it was found that her bladder and kidneys were fine, everything as it should be.

I took her to the homeopath and she was given a remedy which made the smell go away for about 2 months. The infection also made her lose all ability to know when to go for a wee and she would have accidents pretty much every day at school and would need changing. Not full on weeing herself but just enough to make her pants a bit damp and therefore smelly as her wee smells so bad. But after the homoepath she literally overnight stopped wetting herself.

Unfortunately the remedy stopped working and since then she has tried other homoepathic remedies but they have done nothing at all. The symptoms all returned, worse than ever, and she also started wetting the bed which is something she had never done before. The other kids at school started noticing and she has been really embarrassed about it, I feel so sorry for her. So went back to docs and was prescribed more antibiotics. They didn't work at all, and a urine sample showed that the infection had now become resistant to that type, she was presribed a different sort which she finished a week ago and they did seem to work, but I noticed tonight that the smell had returned.

I am desperate here as the docs don't seem to have any answers and all they can/will do is prescribe yet more antibiotics that don't bloody work and are making the bugs stronger with every course that she takes.

Does anyone have any ideas of where I can go next with this? I would be hugely grateful to anyone who can help.

Your poor DD. Whereabouts are you? I recommend seeing a pediatric urologist. We saw a very good one in London who you could be referred to if you're nearby.

My DD had UTI-related issues which this doc sorted out, when all other doctors kept barking up the wrong tree.

Thanks Doozle, unfortunately we are in the back water of Somerset but to be honest I would travel anywhere if it meant we would get some answers. We did go to see a paediatrician but it was a bit of a waste of time, she didn't really come up with any real explanation of what was going on.

referral definitely needed - possibly something like reflux? ASk your GP about paed urpolgists more locally.

I checked my notes and we saw Mr Agarwal privately at the Cromwell hospital in London.

(I also saw a general paediatrician before this who was no help at all so no how frustrating)

In the meantime, have you tried probiotic powders? My DD had countless rounds of antibiotics, which to my mind, just seemed to leave her open to more infections.

Once we started the probiotics, things seemed to improve. It may have just been coincidence but certainly nothing to lose by trying.

Mr Agarwal mentioned that girls are notorious for putting off going to the toilet and also not voiding completely. He said do everything you can to not let her withold urine and try to check she's let it all out. Know it's more difficult when they're at school isn't it?

Know how frustrating

Do you know what infections were cultured and what antibiotics were given? Not all antibiotics will be effective, uti's can actually be v tricky to treat ( as you've found)

It's vital that a 'clean catch' sample of urine is sent off for culture at each outbreak/ symptom of infection. You will prob be put on an antibiotic in the meantime until infection is confirmed- most likely trimethoprim or cefelaxin. Or a stronger more catch all antibiotic like augmentin duo. You should know within 48 hrs what infection has been cultured and this antibiotic might then be changed

My 5 yo dd has frequent uti's as a result of severe vu reflux. She takes a prophilactic dose of trimetheprim every night to prevent infection. I second giving acidofolus (sp?) probiotic powder to help with side effects of antibiotics

I would be asking for a kidney scan after these infections, and possibly further investigations to check for reflux. Don't be

Fobbed off that reflux is only a problem for babies and toddlers and children grow out of it. My dd hasn't

Hope things improve soon. If you are not happy with the care at yr acute hospital a urology referral is the way to go

Sorry for 2 posts. Can't do long messages on phone

Oh yes, what are you collecting in? Clean catch essential.

If they're giving you those childrn's urine collection bags, these have a very high false positive rate. But I guess at 6 years old, they wouldn't be using these?

Thanks for the replies. I will definitely try and get a referral for a urologist.

The first 3 courses she was given were all amoxicillan, I can't remember the name of the last type but it had an orangey/peach flavour if that gives you any clues.

I always get her to wee straight into a speciman pot, so there shouldn't be any risk of contamination.

The doctors have talked about putting her on low level antibiotics long term but I am really against that idea as I don't think they should be used like that and they don't actually seem to work anyway so what good taking them long term would do I am not sure.

I had severe reflux and persistent UTI's from aged 6yrs (so not true that babies younger childrne only) kept getting treated and recurring but it appears there was a permanent low level infection permanently in one kidney which destroyed about half of one kidney.

I was on AB's for over a year (2 years form memory?) - Septrin whcih I think has been withdrawn now due to side effecs though I had none.

Don't refuse long term AB's on a general anti AB principle - in the right hands (ie a specialist urologist) the right long term AB is way way way more preferable to the permanent kidney damage I have.

Yes I second Kewcumber re: low dose antibiotics. DD was on trimethoprin for about a year and that helped enormously.

Hi, I had loads and loads of UTI's as a child which weren't picked up early enough and went into full blown kidney infections which made me so ill. I suffered on and off my whole life until recently. Apparently giving birth sorts out a lot of UTI problems. Very often UTI's are caused by the ecoli bug being transferred upon wiping from back to front. You should be able to find out if that is a reason for your daughters UTIs, it would have shown up in the urine analysis when an infection was diagnosed. If so wiping from front to back to be emphasised etc, I was also on long term low dose trimethoprim for nearly 2 years and it made an enormous difference. Also when there is no infection present, you can encourage her to drink cranberry juice - the high cranberry content one twice a day which stops the bad bacteria sticking to the wall of the bladder and so can be used as a preventative (I swear by this), other things like no bubble bath in bath water is a big one. Hope things can be resolved for her!

I'd never even heard of reflux until I posted this thread and have now read up on it...sounds like dd could very possibly have it but would that not have been picked up when she went for the ultrasound?

Yes it is coliform bugs that have caused the infection, though she doesn't wipe her own bum very often (yes I know she probably should!), she asks me to do it and to be honest I don't really mind as it means she is being wiped from front to back. She hardly ever poos though, it seems to be getting worse to the point where she will only poo once a week. I have recently spoken the doctor about and and she gave me lactulose but dd goes bananas whenever she has to take it and after 2 weeks I can't see any difference, she is still not pooing.

If long term ABs is the only option then that's what we'll have to do, I am really scared about her getting kidney damage. But so far none of the short courses have managed to clear the infection completely, so why would the lower dose work? Also would the infection not just come back as soon as she stopped taking them, even if it was after a year or two?

As far as I remember, no, reflux wouldn't be picked up by a scan. You'd need a MCUG (micturating cystourethrogram) to check for this.

The urologist/paediatrician would look at the whole clinical picture before deciding whether to do this. MCUG seems to be standard practice if you have a younger child with UTI's. But not too sure at your DD's age.

i have to confess that i don't know much about UTI's but there is a link between constipation and UTI's. My little girl has severe longterm constipation and her surgeon is always asking if she has any urinary symptoms, i know that when she is really bunged up she wets herself as the pressure of her bowel presses and squashes her bladder, Thats not really much help i know but may be part of the problem.....

"The doctors have talked about putting her on low level antibiotics long term but I am really against that idea as I don't think they should be used like that and they don't actually seem to work anyway so what good taking them long term would do I am not sure."

Please don't disregard this advice. Kewcumber is right. The other alternative is permanent kidney damage and possible kidney failure in the long term. I am surprised that your GP hasn't followed this up and referred your DD for bladder reflux tests and DMSA scans. UTIs have potentially very serious implications, and in this case I think that homeopathic remedies are not the way forward.

DD has bladder reflux and was on a prophylactic dose of antibiotics for three years, but it did the trick by preventing infections and keeping the urine sterile so that when it flowed back towards the kidneys it didn't cause a kidney infection. In this case using a low dose of antibiotics, carefully is definitely the best way to deal with this. You can't gamble with your daughter's health.

Yes PUMBA I had read that too recently so I am really trying to get her to poo, like I said the lactulose doesn't work and I am giving her loads of fruit but that's not working either. I will take her back to the docs tomorrow.

Bunbaker you are right, I am really scared that she will have permanent damage if it's not sorted soon. Was your dd fine when she stopped the ABs?

Perhaps ask the GP about movicol alot of people seem to say it works well, wasn't the case for us but we seem to be in the minority..

Sounds very much like my two eldest daughters.
Had all the scans etc. Long term low dose anti biotics has done the trick for the eleven year old, no longer wets bed either!
AB seems to have worked for nine year old, but still wears dry nights.
Now look as if my three year old dd is following in her sisters footsteps.

Yes, yes very surprised they have not put you on a low dose of Trimethoprim daily to prevent the infections, this worked well with my ds.

Hope things improve soon.

Hi igetmorelovefromthecat
I love your name BTW. DD is absolutely fine now. She just has to get her blood pressure checked annually as it is a good indicator of how the kidneys are functioning.

She was started off on a low dose of Trimethoprim, but had a breakthrough infection, so she was put on Cephalexin and had no more infections after that. Her UTIs were so serious she ended up in hospital with them, and I was told that if she ever had an unexplained high temperature I should get a urine sample to the doctor for testing.

I am not against homeopathy BTW as I have used it for myself, but it is a complementary medecine, and in this case no amount of homeopathic remedies are going to kill off the nasty bacteria in a UTI.

I hope you get to the bottom of this and your daughter feels better soon.

Oh God feel your pain, DD curently on co-amoxiclav for her UTI, we were on Trimethropin (sp) but after it taking both me and DH to pin her down to get it anywhere near her nouth they changed it yesterday, DD has been incontinent and constipated for everm never toilet trained and aDr finally suggested that she has infections and is now being referred for a scan, what really pees me off is that we have been under a general paediatrician since March who has never even suggested a urine test and it takes a very nasty fever and pain for her to be finally referred to someone.

Just as a side was told by the doc that amxycillan won't even touch the bug.

Good luck with your DD.

FiveGoMad
I am horrified at the incompetence of your DD's doctor. DD had two UTIs within a week, and ended up being hospitalised for the second one. At the first one the GP asked for a urine sample and, after the second one the doctor at the hospital said straight away that he was referring her for a bladder reflux scan and a DMSA scan (this checks the kidneys).

A simple dip test indicates the presence of infection, but not which bacteria it is, so they send the sample to the lab for testing so that they can prescribe the correct antibiotic for it. Amoxycillin might work on some bacterial infections, but DD has had Augmentin, Trimethoprim and Cephalexin for UTIs. This is why the sample has to be tested at the lab.

Thank you Bunbaker, the only reason why we ARE being referred is that she now has a nasty infection and a high fever, otherwise we would still be plodding along with us thinking that DD was lazy, this answers a lot of questions.

does your dd go to the toilet regularly at school. sounds a stupid question, but lots don't like the loos because of the bullying that sometimes goes on there and the fact they are frequently dirty and smelly. Also, baths every day (no bubble bath etc). You will probably need drugs on top of all this, but those things can help.