Son UTI for over a year -help

[cosietea]

I do have another thread in chat which tells the whole saga but I'm really after some quick advice from anyone medical please

Son 16 years old
Ecoli infection in urine since August 2023 ( yes over a year!)
8 course of antibiotics ( all sensitive to the infection)
Still infected
One ultrasound 10 months ago which showed debris in bladder but nothing concerning with bladder or kidneys

What would be causing this persistent or reoccurring infection please? Already had a referral to paediatric but they sent him home with more antibiotics back in September and we are back to square one

Help please! Anyone have experience, knowledge of what would cause this and how to resolve? Not getting much help from NHS

Paediatric nurse here - he should at least have had a follow-up with the paediatrician he was seen by. He needs a referral to a urologist. Time to start jumping up and down.

@cosietea I had a stubborn ecoli UTI which cleared up with IV gentamicin. Has he had this? Not sure if it's suitable for his age, mind you!

Yep, as @TopKat28 says. Go to your GP and get a referral to a Urologist. Depends where you are, either paediatric urology or an adult urologist now he’s 16.

We saw paediatrics in September but because he's not unwell with it ( no fever or pain) she wasn't that bothered and discharged him back to GP with nothing stronger than they were able to prescribe

He's had
3 course of Trimethropin
Amoxicillin
Nitrofurintoin
Cefalexin
And now Pivmecillinam which in the strongest the GP said she could prescribe

I've made a complaint through PALS yesterday because I need something more to happen. Why are antibiotics not clearing it when they are all apparently sensitive?

I asked about IV but was told he's not sick enough

@Covidwoes hope you don't mind me asking if this via the NHS and how long did you have the UTI before they offered this?

I'm seriously considering going in to debt to pay for private care but have no idea even where to start

Don't bother with the nhs they're utterly useless for uti.
Head to the chronic / embedded uti Facebook page. Read CUTIC uk, look up the work by professor malone Lee and lastly and most important make an appointment at the Harley street clinic to treat his embedded UTi. Best of luck

Firstly when he is getting so many in a year they should be taking urine samples and seeing in a lab which antibiotic is most effective for it. Sometimes the bacteria can become antibiotic resistant, particularly when you have an infection that has had multiple treatments in a row - one infection I had had become resistant to the antibiotic I was prescribed. Part of the issue I had was they kept putting me on 3-5 day doses that never cleared it - I always found I needed 7-10days but because the policies about over prescribing they gave me a succession of short doses which likely led to the bacteria growing resistance becoming useless. There was an article in the Guardian where they talked about increased antibiotic resistant infections since the move to lower antibiotic doses.
https://www.theguardian.com/society/2019/oct/04/rise-in-persistent-urinary-tract-infections-could-be-linked-to-antibiotics-crackdown

I was eventually put on a low dose of antibiotics for 6 months which did clear the infection that wouldn’t go away but honestly I would try and avoid that if possible as it has done a number on my digestive system as it kills all the good bacteria too. If this is the route the urologist decides be sure to pair it with a really good probiotic with lots of different bacteria strains.

I rarely get infections now because if I start to feel exhausted and other symptoms coming along I take dmannose for a few days and drink lots of water to try and flush it away. I haven’t had one fully develop in 3/4 years (I used to get around 4 a year) but when I did I took some dmannose with the antibiotic. Dmannose is a sugar found in cranberries and other fruit but at much higher concentration in powder or tablet form. It works by binding to the ecoli so it can’t stick to the bladder wall and then you pee it out. You take it with a very small amount for water, wait 30minutes to let it work and then drink a pint of water. I would not use it instead of antibiotics btw as they are absolutely necessary with a bad infection - it can only get rid of an infection on it’s own when it’s very mild and is mostly best as a preventative.

Thanks for the response

This particular infection has been sent to the lab every time and comes back as sensitive to all antibiotics, however they still don't work, although interestingly they are max 7 days and nothing longer

He did also take d mannose with the last lot of antibiotics but again, no difference

Does anyone know what the range for white blood cells is, I only see this in his records but have no idea if this is high?

One of his urine cultures came back with this note

Mixed perineal flora

This means the sample contains the sort of bacteria you would find around your bum/in your groin area. A contaminant of the urine sample probably (very common).

I am sorry don’t know what that is - I definitely got a confusing mixed flora result before. I know there has been some discoveries done about people with chronic infections having bacteria bound to the bladder wall that is very difficult to treat - sometimes tests won’t pick up the bacteria as it’s bound to the wall but there isn’t much in the urine itself.

Has he tried a thing called Hipex - I haven’t used it but I have read good things. It apparently changes the acidity of the urine to make it less hospitable to bacteria. Some people have had good results with it.

With the dmannose you do need a decent amount and also there are some on the market that are not very good. My regime with dmannose when I feel it coming on is to take 2000mg 4/5 times a day and follow each dose half an hour later with a ton of water - I do it for a week. If I am too late and an infection has already fully developed it won’t clear it without antibiotics. If you’ve already exhausted this maybe ask about the hipex - I think you can get it without a prescription. It is very frustrating- I went through it for years before I got clear of it and now have a ton of food intolerances from all the antibiotics.

White blood cells from a blood test or in his urine?

@nalgidu from his urine

A blood test last month showed nothing abnormal

Not sure if this is relevant but he also had an episode of chest pain upon exercise and was admitted to a&e and had raised troponin levels. Normal ECG and ECHO and they sent him home. A week later his levels had come back to acceptable ( not zero) and we do have a follow up with cardiology soon

I have no idea if this could be related to all UTI infections and antibiotics use

@RandomWordsThrownTogether thank you, I will look in to hipex

We did the powder for d mannose because he does struggle with capsule and he was having 3mg twice a days

@Teisen1990 thanks, I have previously looked up this professor but honestly I'm not in a position financially to book in to Harley street, I wish I was

@cosietea only a few weeks, but it was only because I started vomiting and had a fever, that they took action! I wouldn't have got it otherwise. UTIs are treated soooo badly. Unless you're really unwell, the medical profession couldn't care less sadly.

Thank you all. I will see what comes of the complaint and carry on with GP for antibiotics until this is fixed

Well he still has an infection except this time it's showing pseudomonas bacteria which is resistant to a lot of antibiotics

I don't know where to go from here. He had a lot of pain when urinating today

We are waiting on GP to call back after they speak to microbiology to see what next to prescribe

We now have a prescription for Ciprofloxacin

Ciprofloxacin is a really hefty drug.
Also, the bladder has lots of bacteria in it, just because one has been cultured doesn't mean that is the one that is causing the issues

Yes I have heard this but it seems to be a last resort for the GP

Head to the chronic/embedded uti Facebook group. You'll find lots of support. Your gp won't be able to sort this I would bet