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.

Hoping your daughter gets better soon and you get some answers. Your local hospital sounds terrible. I remember my sister being constantly ill for a period of time when I was younger and kept getting dismissed. Turned out she needed her gall bladder removing, obviously she didn't fit the criteria for somebody who who gets gall stones/needs removal as slim 15 year old and it was totally overlooked but one day my mum just refused to take her home, they ran more tests and discovered that's what the issue was. There definitely seems to be something more going on and I really hope she gets some proper treatment soon.

It definitely seems like testing for celiac & chron’s would be a good idea. Celiac should really be done with endoscopy, blood test doesn’t always find it.

The poor little thing. You must be absolutely beyond worry. If you don’t get anywhere with your local hospital ask for a referral to a specialist paediatric centre and say you are not happy with the care you are receiving and want a second opinion. You need to trust your instinct- being that poorly over such a long time isn’t your average run of poor health.

I remember when my baby had a missed kidney infection. The reg on call in paeds was so bloody patronising and sent us away saying it was just a virus and gave us advice on going up a nappy size (still so pissed off about that). I knew she wasn’t ok and went back next morning. When I saw her she was like oh still a bit worried are we in that special sing song voice you’d only use on someone you thought was stupid… Said child then went blue, vomited all over the place and started fitting.

Hope she’s feeling better soon, sounds horrible.

PUJ obstruction is something that can cause recurrent urine/kidney infections and is extremely common in children

x

Is it worth speaking to PALS?

Good luck tomorrow and don’t doubt yourself !!

I can’t believe what I’m reading. It’s bordering on negligence on part of that hospital. I’m so sorry OP.

When you have your appointment tomorrow make sure you’ve got notes of dates/frequency of infections etc and any questions you want to ask. It’s so easy to forget in these situations.

I hope you have a settled night with her.

Was just going to write the same as @Sexnotgender re bullet pointing all the illnesses and medications this far

If you're not taken seriously tomorrow can you log a complaint with PALS?

How is she this morning?

Hope it goes well at the hospital today

Hope your DD had a better night.

The only other one I can think of in terms of getting some form of referral is to ask whether you've had your DD weighed officially to show how much her weight is suffering? I think at 5 you can still get a HV to do it. If she's crossed several weight centile lines, that can be a reason for referral to paeds. My experience is HV can be good in that kind of scenario, and if they can't refer you on directly I've found going in saying 'the HV said do this' does help get GPs to refer.

She had the same kind of night, couldn't get temp below 40.5 even with medication. Tossing and turning all night as her stomach was so painful. Just keeping everything crossed that something is picked up in the blood tests today so that hopefully we have an answer as to what is going on!

Please, please make contact with your local PALs team. They sometimes have people at the hospital who can be with you and help navigate the system. I really hope you and your LO get some answers today.

PALs officers- that's what they're called. You can find your nearest one here www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Really hope you get some answers today OP. Do you have a consultation with the Dr or just an appointment for bloods? If the former I would be pushing them for a plan.

Sorry if someone else has already suggested this but im at the airport so can't check the comments properly but when she has bloods today maybe you could ask them to also check for glandular fever. Recurrent tonsillitis can be a symptom of this. I suspect it's probably something else but still worth ruling out x

Your poor dd , and you. I hope you do get some answers soon as to why so many UTIs and infections generally. Her weight is an issue too, I don’t understand why they said they would admit her if she wasn’t better and then when you took her back they just sent her home again.
I hope you do get to see someone who will look at the whole picture and work out what is going on.

OP I don't think the 'bloods' will necessarily give you the answer here, I really do think you need to try and scrape together the cash for a private assessment, sorry She needs a proper check over, not just 'bloods' taken with no context or proper check over. Good luck op, I am so sorry you are going through this, but you were incredible advocating for your little girl

@PrivateHall no but where we do bloods is on the ward and if a child presented for bloods looking how op says her child looks I'd ask for a dr review immediately

Ahh that would be good! Our paeds venepuncture is done in outpatients in a nurse led clinic, so I guess it depends on the setup. However our paeds would have just got them done when the child was in A&E rather than this carry on!

I agree with a PP who said that even if you have to borrow it or put in on a credit card, get an appt with a specialist and get some answers. For the sake of £250 it's worth it.

I wouldn't allow this situation to carry on for the sake of a relatively small amount of money.

But she is unlikely to get the answers for £250. You are acting as if you go into a consultation with a private Dr and come out with a clear diagnosis. That is unlikely to happen in a case like this.
In reality, there is a range of possible causes for OPs DC. She will need various tests. It may take a long time to diagnose especially if it is a relatively minor thing like constipation as the underlying cause or poor gut bacteria because it takes time and trying various approaches. Or if the cause is more than one thing.
Go private if you want, but only do so on the basis you can spend a lot more than £250.
The OPs GP has ignored NICE guidelines. The child should have been referred ages ago. Kick up a fuss and insist on an urgent referral. Say you will take any cancellations of appointments.

Alternatively, keep taking her back to A and E.

CONCLUSION
Recurrent or persistent infection is a major manifestation of primary immunodeficiency. While most children with recurrent infection have a normal immunity, it is important to be vigilant in this population for unusually frequent or severe infections. The early involvement of a clinical immunologist in cases of suspected immunodeficiency is crucial since early investigation and treatment of a child with an underlying primary immunodeficiency can prevent significant end-organ damage and improve survival and long-term outlook.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3377046/

Good luck today OP!

Where are you having the tests? Will a different HCP have a chance to have a look at her in the clinic? You can definitely ask for a second opinion if so

The tests are being done in the children's day clinic at the same hospital. I'm going to ask for further advice whilst we are there but I presume we will be seeing a nurse rather than a dr.

To those suggesting private, it really isn't an option unfortunately. Obviously I feel horribly guilty that I can't get her that but finances have been tight this year and credit cards/loans etc are not an option.

I've been given some really good ideas of what to ask for from this thread though so I feel a bit better prepared now. I'm going to request an appt with out Gp as soon as the results are back and ask for an urgent referral. I've also just emailed our Gp surgery and asked for a copy of her full medical records so that we have a definitive list of every medication etc she has taken