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Original poster

A&E or wait to see the Gp??

588 replies

ohnoohnoo · 14/06/2022 04:42

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.

OP posts:
hatetheheat2 · 15/08/2022 15:02

Cakeorchocolate · 15/08/2022 13:17

Any updates @ohnoohnoo ?

Hope dd has recovered from the latest bout and GP updated referral to reflect another infection to get it considered urgent.

No updates so far but thank you for asking. We're still just waiting for the hospital to look at the new letter from the Gp

justasking111 · 17/08/2022 13:44

@hatetheheat2 hopefully better news now

hatetheheat2 · 17/08/2022 19:05

justasking111 · 17/08/2022 13:44

@hatetheheat2 hopefully better news now

Still no news from the hospital yet but hopefully we will get moved up the list soon!

Original poster
ohnoohnoo · 30/08/2022 13:33

Not sure if anybody is still watching this thread but thought I'd update a little bit for anyone who may be going through similar!
Our GP wrote another letter to the hospital 2 weeks ago after her last bout of tonsillitis m, however the hospital have decided she still doesn't qualify for the urgent list.
She's now woken up with it again this morning, despite only finished her last full dose of antibiotics 10 days ago and being back on her daily low dose antibiotics.

This is her 12th bout now since feb so it's honestly just ridiculous! I've managed to get the money together for her to have a private consultation next week. I still can't afford for her to have the surgery privately but someone recommended me getting the consultation because apparently this can help to be bumped up on the nhs list if the consultant thinks it's necessary.

OP posts:
hedgehoglurker · 30/08/2022 13:43

Yes, still following. This is very distressing. I hope you've managed to get the appt with a consultant who is at your local hospital/ where you are being referred to. If not, I'm worried it might not work as you hope.

Original poster
ohnoohnoo · 30/08/2022 13:52

@hedgehoglurker oh no I didn't realise it would have to be in our local trust. Unfortunately the only hospital that could see her privately is 40 mins away from where we live. I honestly just don't know what to do anymore. She's still on the low dose daily antibiotics which just aren't doing anything. She then has ten days worth of coamoxiclav every time she gets it which is approx every two weeks. Yet they still won't see her as an urgent case.
She's back at school next week and she's just going to be absent again constantly if this carries on.

OP posts:
OhFFS! · 30/08/2022 13:54

In your position I think I would still see the consultant that you've found. You need the correct diagnosis and even with a different trust, you might be able to use that with your local one

IWishIWasABaller · 30/08/2022 14:02

If I was in your shoes I'd think I'd be trying to come up with a way to go private. The damage that the constant antibiotics must be doing to her little body and the constant pain & discomfort. Her whole life will change with them removed, we had the same issue here with my son. We were told that the public wait list was 5 -7 years luckily we had private health insurance at the time and they were removed a few weeks later. Is there anyone close that could lend you the money or maybe find a consultant that does payment plans ?

Original poster
ohnoohnoo · 30/08/2022 14:18

IWishIWasABaller · 30/08/2022 14:02

If I was in your shoes I'd think I'd be trying to come up with a way to go private. The damage that the constant antibiotics must be doing to her little body and the constant pain & discomfort. Her whole life will change with them removed, we had the same issue here with my son. We were told that the public wait list was 5 -7 years luckily we had private health insurance at the time and they were removed a few weeks later. Is there anyone close that could lend you the money or maybe find a consultant that does payment plans ?

The consultant offers payment plans I think so this may be an option. I just want them removed now because I'm so worried about the impact of constant antibiotics, especially because of how strong the ones she's on are!

OP posts:
uncomfortablydumb53 · 30/08/2022 14:35

I'm so sorry your DD is still suffering badly
You've just posted what I was going to say!
Stick with the private consultant because if they can find a way round it then they will, especially for a paediatric case.
Definitely talk about a payment plan, My friend had to have a hysterectomy and had a payment plan
Her consultant prescribed her HRT then she was able to get it from nhs GP.. There is a possibility your situation would work the same The consultant needs to send paperwork to the GP

hedgehoglurker · 30/08/2022 15:15

I hope I'm wrong. I just don't see that a single appt/ diagnosis from an "outside" consultant will sway the opinion of the consultant at the hospital, who ultimately will be managing their list and performing the procedure.

Your GP has done the referral, so they don't seem to need convincing, such as the PP case for the GP to continue a prescription for HRT.

I would want an appt with a consultant who your GP can refer you to and is able to get my DD on their NHS list. Can your GP recommend a consultant? Or, can the private hospital advise on how it might be able to help your DD achieve the surgery faster, ie which hospital to be referred to?

As you already have a diagnosis, I'd only have a private appt if I can follow through with the private surgery, as I worry that you cannot afford to potentially waste this money.

UrsulaPandress · 30/08/2022 15:47

I’m so sorry to read that your daughter is still suffering.

WestIsWest · 30/08/2022 16:18

hedgehoglurker · 30/08/2022 13:43

Yes, still following. This is very distressing. I hope you've managed to get the appt with a consultant who is at your local hospital/ where you are being referred to. If not, I'm worried it might not work as you hope.

Maybe it’s different in different areas but I’ve experienced a private Consultant out of area referring back into the NHS for urgent treatment twice in my family.
I hope they get her sorted soon OP it sounds awful for all of you. Do you give her probiotics? Might help some of the stomach pain if it’s the antibiotics that are causing it.

WestIsWest · 30/08/2022 16:19

hedgehoglurker · 30/08/2022 15:15

I hope I'm wrong. I just don't see that a single appt/ diagnosis from an "outside" consultant will sway the opinion of the consultant at the hospital, who ultimately will be managing their list and performing the procedure.

Your GP has done the referral, so they don't seem to need convincing, such as the PP case for the GP to continue a prescription for HRT.

I would want an appt with a consultant who your GP can refer you to and is able to get my DD on their NHS list. Can your GP recommend a consultant? Or, can the private hospital advise on how it might be able to help your DD achieve the surgery faster, ie which hospital to be referred to?

As you already have a diagnosis, I'd only have a private appt if I can follow through with the private surgery, as I worry that you cannot afford to potentially waste this money.

They could put her on their own NHS list though.

hedgehoglurker · 30/08/2022 16:53

WestIsWest · 30/08/2022 16:19

They could put her on their own NHS list though.

Show quote history

Yes, if they have one, which is exactly why I suggested liaising with the hospital to see if this is possible.

Original poster
ohnoohnoo · 30/08/2022 17:05

@WestIsWest that's what I'm hoping for! We've started some probiotics but aren't seeing much improvement yet. Hopefully we will do soon

OP posts:
DuckbilledSplatterPuff · 30/08/2022 17:37

What an ordeal for you both. One of my DCs had tonsil problems and it involved many sleepless nights. Not as bad as your poor little DD tho. I hope you have some success with the probiotics etc. Wishing you all the best and hope you get a resolution soon.

isthismylifenow · 30/08/2022 17:41

Good grief OP, I have only just read this whole thread I don't even know what to say as it's shocking the way you've been treated.

Let's hope she has the surgery soon. My dd very was unwell with all sorts of seemingly unrelated illness, and once the tonsils were out, she was so much better. I'm not in the UK so it works a bit differently, but she had urgent surgery due to quinsy. (that is what came to mind when you mentioned the pus previously).

Im sorry you and your dd have had to go through this.

Original poster
ohnoohnoo · 30/08/2022 17:45

isthismylifenow · 30/08/2022 17:41

Good grief OP, I have only just read this whole thread I don't even know what to say as it's shocking the way you've been treated.

Let's hope she has the surgery soon. My dd very was unwell with all sorts of seemingly unrelated illness, and once the tonsils were out, she was so much better. I'm not in the UK so it works a bit differently, but she had urgent surgery due to quinsy. (that is what came to mind when you mentioned the pus previously).

Im sorry you and your dd have had to go through this.

Thank you. I honestly never thought it would be this much of a fight to have them taken out. I don't understand how she is classed as non urgent when her little body is fighting the infection every 10 days/ 2 weeks. Hopefully the private consultant may be able to help!

OP posts:
WestIsWest · 30/08/2022 18:23

Have you spoken to PALS? I’m wondering if you could ask for a second opinion about whether it’s urgent or not? Hopefully seeing the private consultant will move things along. You really shouldn’t have to be going private though, especially for a child!

Original poster
ohnoohnoo · 30/08/2022 19:16

@WestIsWest I wasn't aware that PALS could help with that but I will definitely give it a try if they can. I'm happy to take any suggestions people can think of at the moment as we just aren't getting anywhere.

I've got a sobbing DD tonight with a temp of 41.5 despite calpol and ibuprofen and I feel like a failure as a mommy because I just can't get the help she needs!

OP posts:
SammySueTwo · 30/08/2022 19:42

This is horrific.
I understand that times have moved on since I was young and several of my friends had their tonsils out in the late 70s/early 80s after a few bouts over possibly a prolonged period.
My god daughter had bad bouts at least once every 6 weeks and did meet the original NHS threshold for removal. After months and months on the waiting list (during which the bouts continued) the threshold had moved and she was told she would come off the waiting list. After two further bouts in a month, she went back on the list - the wait was over a year.
In the end her aunt paid for the op privately. I'm afraid it cost thousands - but otherwise it could have impacted exams etc. I am pleased to report no issues due to the op or since.
There is a risk that the private consultation will confirm the diagnosis but not speed up an nhs op - but I think it's a risk I would take. This situation can't go on and maybe a second opinion would firm up the urgency.

Original poster
ohnoohnoo · 30/08/2022 19:50

@SammySueTwo thank you for your comment. I'm glad your god daughter managed to get them out in the end.

The current threshold I think is 7 bouts in a year, we have had 12 in 6 months so I'm not sure how she still doesn't qualify! My fear is that the only way to get it sorted is to pay to go privately but we just can't afford it.

I honestly am so worried about not only her health but her education. She is going in to year one and is already significantly behind because of the time she has had off poorly so I just don't want that to get any worse

OP posts:
BloodyCamping · 30/08/2022 20:02

UTIs, mouth issues, stomach pains sound like celiac. Why not go gluten free while waiting for the consultant.

Original poster
ohnoohnoo · 30/08/2022 20:03

BloodyCamping · 30/08/2022 20:02

UTIs, mouth issues, stomach pains sound like celiac. Why not go gluten free while waiting for the consultant.

She's already had the tests for coeliac and it came back negative

OP posts:
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