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.

Also raise in the children's day clinic her history and ask for their help and advice in getting this resolved. I don't know anything about children's day clinics so I do not know what they can refer to. But they should be able to advise you what the best thing to do if they can't directly help.
If they can refer ask to be referred urgently. Emphasise how long this has been going on.
You need to be in the system and you aren't really at the moment.
You might be lucky but be prepared that it might take a long time to diagnose and resolve, especially if the underlying cause is something like constipation plus gut imbalance. Or it might be as simple as they have not yet given the right antibiotic to clear her uti.

No medical knowledge but good luck OP today. Stick at advocating for your daughter.

Fingers crossed a good, experienced nurse takes the blood, listens to you and goes to fetch a doctor.

I feel for you OP. That sounds very difficult. Maybe ask them to review her medical records, asking ‘is it your view that this is all normal childhood illnesses’. Then repeat ‘so 10 uti’s is normal?’ and do keep track of the names of the people you speak to. Also keep track of what they’ve tested for so you can do research and ask for specific other tests and scans. When being fobbed off I’ve said (very calmly and politely) ‘so are you refusing my request? Ive gotten a ‘no, if you really want it fine but I’m not convinced etc etc’.
you really shouldn’t have to fight this hard.

I’m used to being in hospital with my eldest. Never had a UTI but pneumonia was her favourite. She’s up into double figures on that one. After about 1/2 a dozen admissions they did serious investigations. Turned out to be an issue with the structure of her lungs.

She was under the care of a lovely respiratory consultant, we had a routine appointment with him and I mentioned my daughter looked to be coming down with a chest infection, I said this is how the pneumonia starts, she goes from a few cold like symptoms to A&E in about 12 hours. He listened to her chest and said there was maybe a hint of a crackle. Gave me a prescription for antibiotics “just in case”.

That evening she did her usual and went downhill super fast. I took her to A&E and she was admitted to HDU. Lovely respiratory consultant happened to be in checking on a patient and said he’d thought I was exaggerating 🙄

I hope you get answers soon. I know full well how hard it is when they’re ill and you just want to make it better. Big unmumsnetty hug 💐

I hope you get answers soon OP. But yes please push the GP for a referral, sadly A&E won't do anything and the best way is to get her in the system by having a referral. Can you also change GPs if you don't get anything from your current GP?

Your poor DD. I really hope that someone has taken your concerns seriously today.

@ohnoohnoo I hope you're okay

@QuidditchThroughtheAges thanks for your thoughts. We've had the blood tests done today. When we took her in she still had a temp of 40 and was quite upset but they didn't even ask how she was they just said "we've seen you were in A&E but let's just get the bloods done". Then we were sent back home.
Luckily DD has been so brave and is actually starting to perk up a little bit tonight. We've been told it will be a week to get the results so now I'm just hoping these antibiotics keep working and we don't get even more problems before the results!

That’s really shit treatment. Poor little mite. Hopefully you get some answers soon.

With every update I read, I just feel so appalled for you. The treatment of your DD and toy is inexcusable. I can’t fathom the nonchalance with which they’re treating your family. I really hope you get some answers soon.

Does she snore? She might need her tonsils out. Has anyone suggested that as an option yet?

OP you're being treated appallingly. Don't feel bad about being unable to go private - tbh we have private insurance but the few times we've needed the kids seen it hasn't been an option available privately .

I would absolutely be asking for an urgent referral and I'd be looking up NICE guidelines for all her problems too.

Aside from anything else being on constant antibiotics is bad in itself for your immune system.

I hope you get some answers soon. I've been that parent before where I've had to go against doctors and honestly it was so so tough but turned out my 3 year old had double pneumonia and not 'a cold' as they'd insisted. Sometimes you just have to banish doubts and fight.

Hi, many years ago when our DD was young she had repeated bouts of tonsillitis, She was so poorly, burning to the touch and v high temp. I fought for some time and finally saw a consultant and he said her little body was being poisoned every month with the infection. She was small and underweight for her age also but the GP threatened to remove me from the practice if I called them again! Thankfully consultant decided a urgent tonsillectomy was required and she never looked back. We actually saw dr privately and he put her on the urgent NHS list as we didn’t have the money for private surgery. Good luck OP, I hope someone listens to you soon!

Yes the more times we see people the more I'm getting annoyed at how we've been treated. I'm going to start making a complaint through PALS.

To the poster asking if she snores, she certainly does, I've honestly never heard such a loud noise come out of her .

In terms of the tonsillitis I've read that she needs to have 7 cases in one year before they would remove, however as we are at 5 cases in a few months I'm hoping they may still consider it. That's just one issue at the moment though as we also need to address the constant UTI's as well as getting to the bottom of why she keeps getting poorly

The utis are likely as the tonsils are a reservoir for bacteria, when it’s recurrent like this the antibiotics never kills all the bugs and so they spread.

If the bloods come up with her immune response being ok then you need to push for the tonsils out.

Mention snoring, and take a liar from scum of all her absences, that worked wonders in dds case.

She put on half a stone the first month hers were out, she was and now is a different child. We couldn’t believe quite how much she’d been suffering until it stopped.

People don’t realise how debilitating recurrent tonsillitis can be

List from scum = list from school!!

We got to the magic number of 7 bouts of tonsillitis in the time frame, I was then told it didn't matter. If I said he'd had 7, they'd insist on waiting till 8 so don't be led by that. Push for it now if you can. Tonsils and adenoids out and grommets in (for glue ear) were life changers for our DS when he was 4. He's never really been properly sick since.

My daughter got repeated tonsillitis. On one occasion we saw an older, experienced doctor in an out of hours clinic. He said that she needed three weeks of antibiotics to once and for all kill the bugs. It worked and she’s hardly had it since (25 years later)

The same thing happened to me recently with repeated utis. I had three weeks of antibiotics and haven’t had one since.

I hope you have luck with the GP, OP.

How much does your DD weigh, we were told they don't like taking tonsils out if they are under 15kg? (Because the risk of bleeding is high and if they are smaller they don't cope as well with it).

If she snores, one possibility that got mentioned to us was sleep apnea. It can apparently cause poor weight gain too.

Might have more luck going down the sleep apnea route for getting tonsils removed than the tonsilitis route, though perhaps the combo would be even more likely. My DD was very prone to tonsilitis but it was the lack of sleep from snoring that pushed the doctor to refer her to get them removed.

A random suggestion but does she have lots of baths? My sister can't use bubble bath as it gives her UTIs so when my DD started getting them I cut out bubble bath and they stopped. Hope you get answers soon, your poor DD.

@ohnoohnoo

I've posted this a couple of times but have you got any answers from the GP?

1 Is her urine being tested and what bacteria is there? Is the AB targeted at that bacteria?

2 Do you wipe her after she has had a poo? Most UTIs (unless there is an anatomical issue) are caused by bacteria from the bowel.

Is she having enough showers? Clean knickers daily- all the usual stuff?

You might know this already (sorry) but scented bubble bath or scented shower products and scented soap can cause UTI type symptoms.

3 Does she always have to have ABs for her throat infections? I thought nowadays they held off this. I thought they did a swab and only gave ABs for bacterial infections, not viral.

She is also as PPs have posted, in a spiral of being given too many ABs. These destroy the gut health, which means her natural immunity is lower, and therefore she can't fight off infections.

I'd be questioning your GPs as to why they keep giving her ABs rather than advising painkillers, lots of fluids and rest.

Poor baby, how is she doing today?

Hi Op, I’m so sorry to read the battle you’ve been having.

I don’t have much advice I’m afraid but I do work in a GP surgery. Your DD’s blood results will almost certainly be back today, tomorrow at the latest. It’s getting the GP to file them that takes such a long time 🙄. If I were you then I would ring the surgery and ask to be put on the GP’s list for a phone call to discuss her bloods tomorrow.

also, if her urine samples have been getting sent off to the lab then I would also ask for those results too. She may need a change of antibiotics as some infections are resistant to certain drugs.

Has the GP asked for a stool sample re the bloody diarrhoea? I can’t remember if you’ve mentioned it at all, if not then please ask for it to be tested for bacteria and also inflammation. You will need to provide 2 separate samples.

Good luck OP, I know how hard it is to fight the system. You’re doing a grand job though 😊