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Multiple UTIs for 4 months...

9 replies

GrumpySwivelHead · 09/09/2019 20:39

My Dd(13) has been looked after by a consultant since she was 3 for multiple UTIs. She is not really dry day or night. The advice has been drink more, double void and take laxatives. She’s been hospitalised twice in the last 18 months for a kidney infection and a nasty UTi. She’s been referred to the children's hospital for renal investigations which have come back clear (following a DMSA and MRI) and now we’re waiting for a urology referral. The problem is they just don’t know why she keeps on getting infections.

The current challenge is that she has been feeling unwell with utis since June (she was last in hospital in Feb) and has been on the usual round of antibiotics constantly since then. I have been in regular contact with her consultant and we ended up in day ward last Friday, sent away with yet another set of antibiotics which don’t seem to be working but should be according to the lab results on her sample. She feels like crap and we have been at the GP 3 times in the last week. Today the GP said try different ABs and come back tomorrow if she’s no better. I’m at my wits end here as she really isn’t poorly enough to be in hospital (she has a needle phobia too so IV antibiotics would be a nightmare to handle) but she’s been feeling ‘low level’ unwell it’s very difficult to manage.

I’m just putting this out there in case anyone else has had a similar situation and had any advice.

I’m tempted to stop the antibiotics and just see how she is to get to a baseline as I don’t know if it’s the antibiotics making her feel awful.

Is there anything else I should be doing? There’s an excellent Dr at the GP surgery and I’ll give her a call again tomorrow as I just don’t know where to go from here.

OP posts:
BabyST · 10/09/2019 00:25

You say she's not dry day or night? What does she wear then? Could that be causing the constant UTIs? Or backflow is urine? Has she had a VCUG yet? Sounds like she's on antibiotics way to much?

Have you tired anything else instead?

GrumpySwivelHead · 10/09/2019 07:09

it’s definitely not reflux according to the Drs. She wears nappies at night and just changes during the day.

OP posts:
SleepyKat · 10/09/2019 07:14

Google Professor Malone Lee. If you can pay privately get to see him. If can’t afford private treatment then ask about a referral to the LUTS clinic at Whittington hospital which treat according to Prof’s guidelines.

He’s very much of the belief that standard treatment protocols don’t work in many cases and need higher dose antibiotics. I know he would say your dd hasn’t had multiple UTIs but one chronic one which has never gone away (yes, the symptoms can dampen down for a bit but then flare up). His private clinic and LUTS are the only places I know of which prescribe the regime he feels is needed as it is against NICE guidelines.

SleepyKat · 10/09/2019 07:15

He’s also a big fan of prescribing hiprex alongside antibiotics which is a bit old school but he’s found it. Works really well.

BabyST · 10/09/2019 18:49

Sounds very difficult for you both. Is she coping well with everything. I know it's not easy with.

GrumpySwivelHead · 10/09/2019 19:35

We went back to the nice GP today and had a big pow wow. She phoned the hospital lab and made sure that the antibiotics are right (it’s yet another different bug this time.) DH also phoned the children’s hospital to chase up the urology referral and turns out that it was lost in the system. It has since been found and we have been assured we should be seen within the month. The good news is that she seems to have brightened up this afternoon so I’m keeping everything crossed that this lot of antibiotics will work and we can get out of this nightmare cycle.

OP posts:
BabyST · 10/09/2019 23:16

Hopefully they can sort you guys out x

vdbfamily · 10/09/2019 23:22

sounds a nightmare. my 13 he old DD was diagnosed with reflux at 8 weeks old and has quite a lot of kidney damage from numerous infections. However, it had never caused her incontinence, in fact, the opposite in that she will go all day without a wee and this makes her more prone to infections. Hope they get to the bottom of this for your poor daughter. Must be very stressful for her.

BabyST · 12/09/2019 20:05

What brand of nappies do you use at night? X

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