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.

That's really interesting. I suffer from UTIs continually. At least one every 2/3 months.

@LovesLaboursLoss

Her urine has been tested but they have never told me what the results are or changed her antibiotics.

I always wipe her now after having so many UTIs but when she's at school she obviously has to do it herself.

She has a bath every other night and clean knickers everyday. We never use bubble bath or anything as I don't want it to cause any more infections.

Ive questioned a few times about whether she needs antibiotics or not and each time I've been told she has a significant infection that wouldn't clear on it's own.
Hope I've answered everything there, my brains a bit fried today so I'm sorry if I missed anything.

I only got this treatment, amongst some others, when I was seen at the hospital in the bowel and bladder service. I think they said to me that more than 4 utis a year and you should be referred.

I remember your thread and it crosses my mind every time my daughter gets stomach issues. I hope he continues to be well.

Your poor little one OP. I hope she’s better soon and they finally get to the bottom of it. It must be so distressing for you.

I really do despair at the lack of care. I hope you get done answers.

So do I. I really want to make a formal complaint but I'm a bit nervous about it because I don't want it to affect any care she may receive going forward!

Just seen your update for me @ohnoohnoo I think you need to insist on knowing what bacteria re in her urine.

I also wonder if you could give her a pack of wet wipes ( moist toilet tissue) to use at school? Her teacher might be able to help out here or a TA, if she keeps a pack at school. She's only 5, and may well not be wiping her bottom carefully enough- and wet wipes make a huge difference.

Paper alone does not get bums clean and if she's having a bath only every other day this might be something to consider too. A nightly shower would help and was her bottom with mild soap.

Another thing to consider- has anyone said this? - is threadworms. I'ts possible she has them and you don't know. They come out of the anus at night and get everywhere, around the vulva, transferring bacteria. Worth asking her if she has any itchy bottom? I'd be giving her a course of tablets just in case.

Thanks, these are definitely things to consider. I will ask at school if they can assist if needed in the toilet and will also provide some wet wipes.

She has a bath every other night because she has a skin condition on her scalp and if we wash her everyday it gets much worse. But I could look at doing a shower with a shower cap or something.

I did actually consider worms when all this started but she has never complained of itching. I've also checked her bottom a few times when she's asleep just to make sure, as well as checking her poop but I'm pretty sure it isn't that.

Our Gp is leaning towards it being coeliacs at the moment as we do have it in the family but we will just have to wait and see what the results are. When she complains of stomach pains (which is 95% of the time) she always points to exactly the same place which is right in the middle between the bottom of her ribs and her belly button.

There is good evidence that cranberry juice prevents UTIs, a recent systematic review of this has been published. If I were you I'd be encouraging cranberry juice as much as possible (obv. watering it down to protect her teeth).

journals.plos.org/plosone/article?id=10.1371/journal.pone.0256992

one of my daughters was treated appallingly - missed fracture for 3 months (didn’t believe her or us, wouldn’t do ct/mri etc, blamed it on her autism and dislike of school 🙄😡) when eventually found it took a further 2 years to regain full strength and movement in her hand - even then they blamed that on dd imagining the ongoing pain etc. I wanted to complain and sue for medical negligence - dd won’t as she’s researched and apparently it’s flagged on your notes and you’re treated differently (for the worse) in future 🤷‍♀️😡

Before I was diagnosed with coeliac disease, I had constant recurrent UTI’s which ended up in kidney infections and pylenophritis more than once. It was only when they couldn’t get to the bottom of why I was constantly getting them (after clear CT’s, MRI’s etc that they literally did bloods for everything and found Coeliac disease). They think it was the pylenophritis that triggered the coeliac disease.
I’ve no idea if there’s an actual link between the 2 but reading your thread it really struck me to mention. Since being diagnosed 12 years ago, I’ve only had one UTI.

@Frazzledbutcalm can I just say- I’m not sure where your daughter has found this information but it is absolutely not true. A complaint won’t ever effect your care, it isn’t “flagged” anywhere.
I would definitely complain in your case.

Thank you happy 😊 …. I too know/assume that won’t happen (I’d imagine if anything they’d treat you better to ensure no complaint/suing is ever made again!) … it happened when dd was 15, it affected her GCSE’s too. She’s now 18 (I believe you have 3 years from turning 18 to bring a lawsuit if the event happened when they were a child), she has autism so is pretty stuck in her ways once she has her mind made up. It was horrendous at the time, she couldn’t even hold a piece of paper yet they were saying it’s all in her head, she’s fine, just doing it to get out of school 😡 It was a terrible 2 years, they messed up so much in that time.

Apologies for derailing the thread …

My son has a medical condition that means regular UTIs.
He takes full antibiotics as needed but he also takes a daily prophylactic dose of trimethoprim. Plus, as suggested by our specialist nurse, he takes cranberry supplements and water d mannose, which is often used in utis and is available from Amazon.

Between 1 and 4 he also had regular tonsillitis, it’s so horrid seeing them in pain. His infections have become less regular as he has aged, he is now 12. I hope your daughter feels better soon.

It’s waterfall de mannose not water, sorry.

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Does she have blackcurrant juice at all? Red juices are notorious for causing irritation and that leads to utis

Same here. I ended up in hospital with blood poisoning due to kidney infection. Was getting a ton of UTIs, constantly in pain, loosing weight. Just felt terrible all the time. Bloods never picked up coeliac for me, which is apparently common. Whilst in hospital with kidney infection a really good consultant took one look at me and referred me for a biopsy. Finally got a coeliac diagnosis after being told for years I had IBS. If the bloods don't show anything you could request further tests. Hopefully it will show up on bloods for your DD if it is coeliac and you can finally get to the bottom of things and treat them correctly. Feel so sorry for you and your DD.

Sorry to keep coming back with more updates but we seem to be at a bit of an impasse tonight. She's generally been feeling a bit perkier although still had a low grade fever. Tonight though her fever has spiked again. So she's had it for 5 days now with no sign of it letting up. I thought I remember once being told that a fever should only last 5 days? So hopefully it will be gone tomorrow but if not I'm stuck on what to do, seems that there is no point taking her back to a&e after how they've treated her so far!

A&E will be able to view her blood results though, if that helps you make a decision?

Please go back to A&E & say you're worried about sepsis.

To be honest I'm doubtful they would after the other day. They couldn't find her stool results from the following week and had no record of her being admitted previously. Makes me have no faith in them at all. I might try and get an appt with an ooh dr

How is she in herself? Her other stubbornness?

Fever in and of itself is not necessarily concerning but if there are other things you are worried about then definitely try and get her seen by ooh

She's crying saying her stomach hurts, won't eat and also says she can't move her neck properly as it hurts