Struggling..recurring utis

[Xxsamx]

Hey not been on here in a while but having such a hard time ...

My daughter has been suffering from recurring uti’s for 3 years she is now 8. She will get a uti every other week if she is not on a low dose of antibiotics.

We have had another bladder scan which showed she does not empty her bladder fully she keeps some liquid in. The person scanning her sent her back to the toilet twice but she still wasn’t empty.

All the doctors keep going on about is constipation. Although she may not go every day she does go most days and doesn’t struggle. I had been giving her lactulose but the doctor wants her to go every day moved on to movicol 2 sachets per day but she is now soiling herself. I feel so bad she can’t go to school doing that! Going to call the doctor tomorrow and see what they suggest? Maybe only one sachet?

She also does dribble her underwear a lot previous to the soiling the last few days.

I’m at my wits end. I don’t know what else to do, hospital say she will grow out of it? I’m sick of having to get on at her all day to drink more, go to the toilet, have you done a poo. She gets annoyed and frustrated I feel so bad for her. She also hates talking about it she is embarrassed.

The hospital do not want her to be on the low does of antibiotics as the bugs become resistant which I totally understand but if she isn’t on them she gets utis non stop! Then she is grumpy irritable, getting up at night for the toilet, wetting herself even more. The hospital don’t seem to care about these symptoms but it is so difficult to deal with.

Next app not till April.

Suppose I’m wondering if anyone is in the same boat and can offer tips

Hopping for a miracle

[Hidden]

Are you sure it's not one UTI that is resistant to the antibiotics and so keeps coming back? Personally, it seems to me that sometimes a particular antibiotic may only put an infection in a kind of remission and not kill it.

[Xxsamx in reply to Hidden]

Hey no each infection is sent to the lab so they know what antibiotics will kill the bugs and the antibiotics she been given should apparently work. Thanks for your reply

[Hidden in reply to Xxsamx]

Paradoxically, repeated doses of antibiotics can reduce immunity to another infection because they kill off the beneficial bacteria in the gut. Supplementing with oral probiotics can help.

[Xxsamx in reply to Hidden]

Probiotics on my list to get tomorrow thank you!

[SallyandPaul]

Good morning,so feel your pain. Our daughter is nearly nine and has been suffering with constipation since she was three. Over the last six months she has suffered almost constant uti s because of soiling. The several different types of antibiotic eventually did nothing so they wouldn't give her anymore. I too was at my wits end. Just before Christmas I did a disimpaction which I hadn't done for years ,maybe really stale poo makes uti s worse. Anyway they gave her medication for thrush in case she had that ( I don't know) also antiseptic oilatum for the bath(no soap bubble baths etc). We give her loads of drinks including cranberry. I also bought her pads to line her knickers so that she can change those herself at school and usually doesn't have to change tights and knickers as well.As for the movicol she has a maintenance dose of 21/2 to 3 sachets a day. I wouldn't reduce by a whole sachet , try a half or make it up and reduce by one teaspoon every few days. I would say until you get the right dose but that's a a very fickle thing!! The other thing I did was buy those wee test strips online so I knew if she had an infection. Things are a little easier for us at the moment, do hope they are for you soon. Take care xx

[Xxsamx in reply to SallyandPaul]

Hey my daughter doesn’t usually soil only has done the last few days because of the movicol, I called and spoke to the doctor and they said to reduce by to 1 sachet and see how she goes. I don’t want her to have an accident at school! That’s a good idea about the test strips! I may order some, I can tell by my daughters behaviour though if she has a uti strange as it may sound. Thank you for your reply!

[Littlecabbage]

I agree with Peristalsis that she should be checked for resistant bacteria. Has her urine been cultured recently to see exactly which bacteria are present, and which antibiotics they respond to? It is true that resistant bacteria can be temporarily dampened down by antibiotics, but if they are not killed, they will multiply again once the course finishes. The issue is that your daughter will have to be off antibiotics for two weeks probably, to get meaningful results from a culture and sensitivity test.

If it isn’t a resistant bug, is is definitely constipation? Has this been shown to be the case on scans? If she’s had constipation issues in the past, it does sound like a likely cause, but retaining urine can be due to other issues (such as “voiding dysfunction” which my son has - see my posts for details). Are you under the care of a paediatric urologist? If not, I would push for referral for a more thorough investigation.

[Xxsamx in reply to Littlecabbage]

Hi yes her urine sample is always sent to the lab, and they tell me which bugs it is resistant to trimethoprim being one as she used to take that nightly.

I don’t think it is constipation that’s the thing but because she isn’t going everyday single day they are saying it is? She never has leakage and doesn’t struggle to go. I feel like the is an easy diagnosis for them to say! She had a bladder scan would that have shown the compacted feces?

I will have a look at your post about voiding issues. She is under a urologist we have just been referred back, she has also had a DMSA scan in 2015 which showed her kidneys where healthy no scarring.

We have been referred back to urologist as she was seeing a nurse at the hospital but all they told us every time we went was to drink more, go to the toilet more every single time we went!

Thanks for your reply!

[Littlecabbage in reply to Xxsamx]

Fair enough, sounds as though the C and S giving you useful results. I’m glad you’re being referred back to the urologist. Can you ask them specifically whether they are confident that constipation is the underlying cause, and how they can be sure if so? I’m sure I read on here about another child being diagnosed due to faecal impaction being seen on a scan.

And if not, can anything else be done to correct the urine retention (e.g. my son had a cystoscopy to check for anything partially obstructing the urine outflow - there wasn’t anything in his case, so his problem is due to his pelvic floor muscles not relaxing fully when he passes urine).

Good Luck.

[Xxsamx in reply to Littlecabbage]

Yes I am going to ask if they are 100% sure it is the constipation that’s causing it, she has had a flow test which did say she had an over active bladder tried lyrinel but didn’t make much of a difference. I do think it could be because she doesn’t relax but how can you change this?

[Littlecabbage in reply to Xxsamx]

From what I’ve read, the only available treatment for “voiding dysfunction” (where the muscles don’t contract/relax at the correct times to allow full voiding), is biofeedback therapy. This is something I plan to ask about at our next urology appointment. I have attached a couple of links about it to my own posts if that helps.

[Xxsamx in reply to Littlecabbage]

Thank you I will have a look!

[Hidden]

You also might want to try prohibiting chicken in your household. It is a contentious subject but Superbugs are plentiful on chicken and they can infect the bladder via eating chicken.

[Xxsamx in reply to Hidden]

Interesting I’m going to look into this more thank you!

[LauraLillyPugh]

Your post sounds how I feel with my 4yr old! Similar situation and currently on keflex as resistant to trimethoprim at the last uti! We are 2/3 if the way through the biofeedback thingy but they aren't sure of its effectiveness given her age and that she has overactive bladder and dysfunctional voiding! They keep trying to tell me she's constipated but she doesn't have the overflow stuff and as soon as she is on medication for it she soils and I'm not willing to put her through that as well as wetting! I see the consultant next month but I hate to think this is life for her (and me) for the next however many years xx

[Xxsamx in reply to LauraLillyPugh]

We are the exact same keep saying it’s constipation but I don’t think it is, I think it’s an easy diagnosis for them! I’ve cut the movicol down as she was soiling her self every day and was so embarrassed about it and so emotional;(( They have never mentioned the biofeedback therapy to us? Going to ask about that! Can I ask where about are you? We are in Scotland land I wonder if we had private health care if we would get more answers I’m not downing the NHS just frustrated at the time this is taking and have got nowhere in the last 3 years. Xx

[LauraLillyPugh in reply to Xxsamx]

We are in Greater Manchester so under the Manchester Children's hospital. As my daughter is so young it literally took me a year if not longer to get the appropriate referral and then it has been a process of elimination with lots of tests and scans. I do fee very lucky to be under a wonderful urology team in Manchester where the nurses all care and understand the difference in what a consultant might say and what we know as the parents of our children and daily life with them. Unfortunately after they messed about with senna (she flat out refused movicol and lactulose) we still struggle some times with little accidents but they aren't the usual overflow accidents which makes me think it is now more of a sensation issue or control of which laxatives will not have a good effect...it's so hard isn't it! I'm just glad to have found a couple of other parents who have similar struggles as I was starting to get really fed up and felt like I was going crazy! The biofeedback I think is having some effect so it might be worth you pushing for that! Although in saying that I don't know if al places do it but would expect that they should have someone trained in the urology department! Xx

[Littlecabbage in reply to LauraLillyPugh]

I have been looking in biofeedback therapy for my son, and they don’t seem to offer it at Birmingham Children’s Hospital, despite having a full paediatric urology team. I know they do offer it at the Evelina Hospital in London.

[LauraLillyPugh in reply to Littlecabbage]

What a shame! I would have thought that they would offer that if they have a full team xx

[Becsjd]

Have you looked into cuti also the luts clinic.

I now believe my daughter has a deeply embedded bladder infection that her body is so used to being there that it doesn't give her temperatures but does give her other symptoms especially pain and wetting...

Try Google and see what you think x

[SallyandPaul in reply to Becsjd]

facebook.com/photo.php?fbid... been looking through these older posts trying to find some help. We have a hospital appointment next week but are on antibiotics yet again which seem to do nothing. Our daughter suffers pain and wetting but no temperature at the moment. She literally drinks bucket loads, just don't know what to do anymore. Have you had any success with getting rid of the infection?

[Xxsamx in reply to SallyandPaul]

Hey no we have not had any success. My daughter is currently on night time antibiotic cephalexin to keep her utis away. We had an app at the hospital on Thursday for a dmsa scan but the nurse couldn’t get the dye in her vein :’( so we are going back on the first of May. We are trying to give her probiotics everyday we have heard that helps, we are also getting her to drink as much as we can. And she takes lactulose to Help her go regular, which she does most days but the doctor still insists saying she may be constipated OMG she’s not constipated!!! Dives me insane feel like I’m talking to a brick wall. I feel like I have no support and every time I go to the hospital they say the same stuff, drinking regular going to the toilet often . I feel like I’m being interrogated whenever we go and I’m doing all I can.

How long has this being going on for you?

[SallyandPaul in reply to Xxsamx]

Bless you thank you for your reply.our daughter is just nine and has constipation since she was three. It started when we went on holiday and we were in the car for two days. She had a urine infection soon after and has had a few over the years but this one has been going since last July. She also has probiotics every day and really drinks loads, always has done. Saw a consultant when she was six and that helped but has always had medication for the constipation. So difficult to get the dosage right so she has constant soiling which causes the infections. Have a hospital appointment in Tunbridge wells next Thursday for the infections not holding my breath but will let you know if we get any joy. As you can imagine so feel for you both but glad we're not on our own xx

[Becsjd]

My daughter is 7 and been having issues since a baby. Treated for 3 yrs..We are now looking at cycospothy and suprapubic catheter and video urodynamic studies.

[Francesca17x]

This is so like my daughter. It’s devastating dealing with this. My daughter just completed a urodynamics study which showed she didn’t have an overactive bladder but she did have high levels of residual urine even after going to the toilet 3/4 times. I am getting no answers as the why this is. The next step for us is biofeedback to retrain the muscles . She had dysfunctional voiding and now an extreme fear of the toilet which has resulted in constipation and encopresis. If I was you I’d be asking for an X-ray to confirm the constripation. There is no point giving movicol and causing more unnecessary distress for your daughter . The stuff is leathal when it’s no needed, my daughter was on it and had diarrhoea accidents most days at school... it was awful. I made the decision to take her off it against th doctors advice. Are you any further forward after your recent hospital appointment ?

[Sharonjsy]

Hi My daughter is 9yrs and was diagnosed with CRS at 3yrs she has been on prophylactic antibiotic since then it helps she takes 2.5ml daily of co-amoxiclav. She still gets rare urine infections and it sometimes a struggle to get antibiotic to treat but if not on daily 2.5ml she would have uti's constantly.. Good luck x

[Sharonjsy]

My daughter had a scan when she was 3 as it was constant UTI'S she was passing white urine and passing blood they could see her bladder was not emptying but they should have followed it up and didn't everytime she had a uti she got antibiotic but the minute she was off it she had another uti... At 3 1/2 she was diagnosed with CRS and has been on a low dose antibiotic ever since.. She is 9 now she still gets UTI'S but not as often.. She will at one point have to try self catheterize to empty her bladder proper. When she was diagnosed she was sent for a urodynamics test

bladderclinic.com.au/proced...