A&E or wait to see the Gp??

[ohnoohnoo]

Have posted a few times about this issue, I should probably change my username as my details are now probably quite outing but I've kept it the same so people can see the previous issues!

Short version of backstory is that DD (5) has been poorly every few days since Feb which was when she got admitted in to hospital with stomach pains and vomiting. Eventually needed a drip and was told it was some sort of gastroenteritis. Since then she has been on antibiotics almost constantly for different things, tonsillitis, urine infections etc. She can't seem to go more than 5ish days without coming down with something else.

Things ramped up 3 weeks ago when she got another urine infection. Temp went to the highest it had ever been (41+), got put on antibiotics and after a couple of days seemed to be getting better. However she then developed severe diarrhoea, going up to 15 times a day and it was just fluid, sometimes had blood in it. That has continued and is still going on.

Gp agreed to do a stool sample and also referred for bloods to see if there is a reason she keeps getting poorly. Stool sample has come back negative for c diff, gastroenteritis and anything else they tested for. She is booked in to the hospital for bloods tomorrow.

Here's where I'm not sure what to do. I picked her up from school yesterday and as soon as we got home she started screaming and crying saying her stomach hurt again, she was literally lying in the foetal position and said she couldn't move. Gave her some calpol and rang Gp to let them know it was happening again. They have booked us in for a face to face appt this morning. Since then she has developed a really high fever and is still crying with stomach pain.

Should I wait and take her to the Gp this morning or should I just take her up to A&E so they can see how bad she is getting and hopefully find the cause quicker? I don't want to waste anybody's time but I'm also at the end of my tether and just want somebody to help her.

I had my appendix out aged 12, it wasn’t infected, suffered with stomach issues throughout my teens, 20’s & 30’s. Had at least 3 colonoscopies, sigmoidoscopy and endoscopy. All NHS In Various London hospitals. Moved abroad and was finally diagnosed with coeliac disease aged 40! Funnily enough by a UK trained doctor who was “Gut health” expert. She was giving me all the woo BS and then when the extensive tests came back from the Lab in California, she said, do you know you have coeliac disease? Er no. My dad had also been struggling for years, had a bowel resection for ‘diverticulitis’ and was diagnosed coeliac aged 78, going GF has changed his life. My DS has also been diagnosed when we got back to the UK privately, as the NHS refused to look into it. Thanks NHS. Honestly do not be fobbed off. I now also have rheumatoid arthritis. Auto immune diseases like coeliac, crohn’s and colitis are so often missed and dismissed as IBS until it gets very serious. Push for further investigations and don’t be fobbed off . Wishing you all the best OP and your daughter.

Just stopping by to say you are not being unreasonable to stand your ground. I’d be asking for full bloods as well if they haven’t already.

Honestly, I can vouch for this. Probiotics can really help heal the gut. After a long journey with my child, this actually worked.

You might want to investigate the possibility she has a chronic/embedded uti with the history of recurrent urine infections. See the link below for more info. inews.co.uk/news/chronic-uti-children-denied-treatment-losing-childhood-urinary-tract-infection-1540249

Repeat urine infection can also lead to decreased kidney function

very good point. 10 UTIs is insane how has she not had her kidneys checked?

I’d go to a and e
do you think it could be a food allergy ?

They have agreed to do the blood tests here so we are just waiting for that now

Definitely don’t back down OP, I’d be refusing to leave the hospital without bloods and a scan of her stomach/kidneys/appendix etc your poor little girl, I hope you find some answers today so she can finally get on the mend!

That’s good. Ask them what differential diagnoses they are looking to include/exclude via the bloods. Write them down while you’re being told.

When the results come back, if they says “bloods all fine”, ask specifically what has been excluded as a result. Again, write it down in front of them. Ask what else it could be and what investigations would need to be done to rule that out.

If you can get a piece of paper write it all down. All the infections, which antibiotics - everything you can remember.

Stress its impacting school and sleep and keep asking for referrals for urology, and gastro clinics. Ask for scans to check for something 'structural' that's impacting her. It sounds awful, but you do need to ask, and push these days.

If she has recurring UTI and you didn't get a scan at A&E, have her referred to a paediatrician, either there or at the GP. DD had recurring ones and she got a referral to one and they did the scans.

I am shocked your GP has not referred her for further tests. It is your GPs job to refer her for tests and to a specialist. Have you been seeing different GPs each time who have not realised how many UTIs she has had? As someone else says her treatment does not correspond with NICE guidelines.
But it is the GP who makes these referrals, not A and E. This is why contrary to Mumsnet wisdom going to A and E is not always the solution.

Just to add, it would be easier when she is referred to a paediatrician because then usually you can contact them directly if you have a problem with DD's infection again. Also make it clear to GP that infection is recurring so would definitely warrant a paed referral

Poor little thing.
My dd had 4 UTIs in a six week period so has had an ultrasound of her bladder and kidneys and we have an appt in august for a different scan (can't remember the name but think it begins with D) where they put dye in through a cannula to see how the kidneys are working.
Please ask the dr to do these scans.
I hope you get to the bottom of this xxx

But it is the GP who makes these referrals, not A and E. This is why contrary to Mumsnet wisdom going to A and E is not always the solution

it depends. If your child is actually sick and admitted, you are referred for tests via the system. Having said that, I can’t help but feel that the OP’s GP has seriously let them down here after 10 infections. I would be furious.

Your poor DD, OP. I know you said that she's had diarrhoea, so this will sound unlikely, but has she been checked for constipation? My DD had recurrent UTIs, massive stomach pain and a kidney infection when she was about 7 and the GP worked out that constipation was the problem (she hadn't been drinking enough at school and had been getting massively dehydrated). She didn't have signs of constipation (in fact it looked like mild incontinence with diarrhoea and some blood) but it cleared up once she was treated for the constipation.

There's a lot of other good advice on this thread, so get the more serious stuff ruled out too.

Hope everything went well at the GP appointment and that your daughter is feeling better and getting the treatment she needs.

Glad you went ahead with the A+E trip. I really hope you get some answers, more than "another UTI", as in an explanation for why she is getting them repeatedly.

I really hope you get some answers

What a nightmare. Your poor little girl. Sounds like she is really suffering. I hope you get some answers.

Sounds awful, definitely a&e to get her in the system. Much easier than the scattergun approach to now.

All the antibiotics are bound to have played havoc with her digestive system, but this seems more than that and pre existed the antibiotics.

Has she been tested for coeliac? H pylori? Has she had ct scan? Ultrasound? At this point I would suggest an upper endoscopy at least and an abdominal and pelvic ct scan.

It could be something as simple as mesenteric adenitis, but that’s a diagnosis of elimination.

Please do go to a&e, and be prepared with a full summary of the history. You can’t go on like this.

Not the update I was hoping to give but we have been sent home they decided to keep the appt for tomorrow for her blood tests and also want another stool sample. They said it's because they can't find her notes on the system so they don't have her previous stool result or what blood tests the Gp requested.

They have said it is a significant UTI so have sent her home with more antibiotics and told us if she doesn't feel better later today I can take her back and she will be admitted.

They had the cream on her arm ready for the blood tests to be done there so I am just so confused as to why they didn't just go ahead with them there.

Just feel like I'm banging my head against a brick wall!

God, this is so bad how you are being treated. They ought to have admitted her. Fingers crossed you get to the bottom of all this very soon x

At least you have bloods to be done tomorrow. Ask specifically what bloods they are doing and if there are others they have ruled out. Start writing everything down that they say so you can ask the right questions.

They have said you can take her back if not feeling better - use this service if at all necessary.

I think you sound like you need to get mroe specific with your details, your notes and your questions. Make a note of the name of each doctor, what they said, when. Be detailed in your questions.

Good luck for the tests tomorrow

Excellent advice. I’ve been on the vicious cycle of uti - antibiotics - upset tummy for years. Finally sorted it now and am waiting for a stool sample analysis of gut health. I have to wait three months after my last antibiotics because that’s how long it takes the gut to recover.

Obviously infections have to be treated but working hard on gut health is vital.