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.

Sadly, this is good advice

Oh OP I really feel for you both. I would want answers too and I can't believe they are sending her home. Do you have a children's hospital near you?
I really hope you get answers soon & she feels better

Wow your poor little girl. You must be so frustrated OP

I've just read all your posts OP and my heart aches for you and your DD. It's so difficult to stand up to medical professionals. Can you contact PALS to complain?

Unfortunately we don't have a childrens hospital near by.

Do you still have the blood tests tomorrow?

The problem is in fairness is that admitting her isnt going to solve the issue - what she needs is a proper referral and testing done to get to the bottom of what is going on and potentially as well properly targeted antibiotics.

A&E are treating the current infection - they are not necessarily the people but it is finding the right department.

Who is getting the blood tests - the GP you need an appointment to start the diagnostic process to figure out what is wrong. At the moment they are just treating the infections separately rather than figuring out the underlying cause.

This is the area I think where the NHS can fall short in getting you to the place you need to be.

Good luck - DS in the end needed proper targeted strong antibiotics to remove his infection that was recurring. The concern for you is that it is both tonsil and urine based

Poor you OP, this is so hard for you. What area of the country are you in?

I would call 111 and ask for a referral for a second opinion. Say you're very scared and she seems to be getting worse.

I'm surprised she doesn't need IV fluids by this point. You poor things it sounds awful.

Also agree with making sure your husband is there next time you see any medical professional

wishing you well OP and your daughter. Sounds incredibly stressful. Just to note re pp comment above, my son recently had a very nasty bout of tonsillitis - the main thing he complained about was tummy pain, with a high temp. GP considered appendicitis, but 2 days later the tonsils erupted and all became clear. GP said they often get swollen glands in their tummy with it which causes pain.
His tonsillitis came immediately after horrible Chicken pox, and both with breathing difficulties, so I do think that unfortunately some kids are prone to these back to back things - we had 2 months of solid illness. I would absolutely make a separate appointment with your GP and go armed with a list of infections and dates to see if they would consider underlying causes/ options to boost immunity, if for nothing other than to set your mind at rest. It’s awful for your daughter and incredibly disruptive for the whole family.
i also got some probiotic kids chewy things and kefir yoghurt for after the antibiotics on recommendation of naturopath friend, it can’t hurt.
all the best!

Does the hospital have PALS? Its patient support. I'd contact them if it does. Also ask for a second opinion. Look up NHS guidelines for advice. Hope you get answer soon and hope your dc gets better soon.

Your poor DD. And you. It must be so hard seeing her so poorly all the time.

It’s possible there is an immunodeficiency which is allowing these infections to rage in your poor DD

Quite - repeated infections and weight loss in a child can indicate immune system issues, and a full blood count is needed to exclude that as a matter of some importance at the outset

This sounds awful. I would make an emergency GP appointment tomorrow.

Ask them to write on her notes that ‘mum is extremely concerned and worried about sepsis’ and insist they write that on her notes.

Also and I don’t know if this would work where you are (I’m in another country) but my friend is a nurse and had a gut feeling her child was I’ll and asked for ‘mum asking for a full medical review’ on her child’s notes and insisted they write it. They didn’t send her home.

of course you can question the consultant! He hasn’t even done a blood test!!!!!!!! Just keep going at them and bring in back up if you can.

is your Gp any good at all??

So very sorry for your child, how awful. My friend's son went through hell getting his coeliac diagnosed, I do hope the blood tests show something tomorrow. I hope she has a better night.

But if her symptoms do not fit sepsis and the Drs have explained why, this will just make you look over-anxious to any future Drs and more likely to be dismissed.

They said this about my nephew and sent him home with antibiotics. He ended up being rushed back, being very poorly and being rushed to a different hospital for emergency surgery. He had appendicitis and it had ruptured. He spent over a week in the RVI. Please push for them to scan her stomach.

They cannot make you leave with a sick child.

Oh how dreadful.

I hope you've managed to stand your ground still and see the paeds consultant, (not that they'll be inclined to investigate further at this point). Tonsillitis clearly doesn't cause stomach pain or UTIs.

The paed consultant has been poorly communicated to if s/he thinks this is just about the tonsillitis.

If you're being discharged there should be a letter for your GP. If they don't give you a physical copy, ask for one and read it before you leave.

I'd also ask to see your child's notes, they probably won't let you, but you want to see that they are accurately recording the multiple visits for multiple infections, and symptoms.

I'd want to see that the letter and notes make clear all of the presenting symptoms, not just the fever and visible spots on the tonsils.

I suggest submitting a complaint to both the GP practice manager and the PALS team for the hospital that you don't feel your child's repeated symptoms are being appropriately investigated.

Not that any of this helps you on the spot. I'm so sorry that your daughter is so unwell and you're not getting the care you should be for her.

Just got home. The consultant passed on a message to us that apparently it can't be anything to do with her immune system because she is too young so she just needs to get over this infection. This is without seeing or examining her at all. I'm beyond furious.
Luckily we still have the blood tests tomorrow so we will see how she gets on tonight and go from there.
I will update if we get any further news as I hate when a thread is left unanswered and hopefully this might help someone else in the future!

Autoimmune neutropenia (I have it) is rare it more common in children
It should show on bloods but its tricky as neutrophils should rise to fight infection
I've just had tonsillitis (seems to be everywhere at the minute!) and it took me 2 courses of antibiotics to get rid
Warm drinks helped me a lot

This is fairly fucking appalling. And I’m a champion of the NHS. I just can’t see our hospital ever treating anyone this way.

So many repeated and extreme infections that require antibiotics and they won’t do a blood test. I just can’t believe it.

She was diagnosed with a severe UTI this morning and severe bacterial tonsillitis this evening and they still won’t entertain the idea that she might have an issue with her immune system.

I feel so frustrated on your behalf.

I’d start the complaints procedure now. Keep a record of all illnesses and all prescriptions and durations and more down all the doctors that have seen her (or not seen her in this case).

I hope the bloods go well and you get some answers soon.

I'm so sorry your little one is in so much pain. I know you can't have a moments rest yourself while they are suffering because my ds was a martyr to tonsillitis.

When he was 3 he had such bad stomach pain we took him to the walk in, who sent us to local hospital paed ward thinking it was his appendix. They did tests and said it's actually tonsillitis. We didn't realise he had it at that point as he had no fever and he was pre verbal so couldn't tell us he was in pain in his throat.

They said children feel pain in their stomachs due to swollen glands from other infections. He had tonsillitis so many times before they were removed and possibly a third of the times he would get this stomach pain, and the fever would make him sick so he was in all kinds of a state.

I am just so sorry you're going through this, but glad your dd has an excellent advocate in you x