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.

Perhaps because the quickest and easiest tests for coeliacs disease won't bloody work if you stop eating gluten?

Or because reintroducing gluten (so the tests work) after having cut it out is agonising?

Or because a high temp and recurrent bouts of tonsillitis are not signs of coeliac disease.

OP I hope and pray that PALS can help you get your dd onto the list for surgery. My neighbours son had his health transformed by a tonsillectomy. Ditto my mother 60 years ago.

I’d try all avenues OP. I’d speak to the GP again and talk about the effect on her mental health and her falling behind at school, ask them to push for her to go on the urgent surgical list. I’d also ask them about sending her for a second opinion. Plus speak to PALS.

This talks about getting a second opinion.

elht.nhs.uk/patients/how-seek-second-opinion

Each health authority has guidelines for tonsillectomy. It’s worth quoting it for your area when arguing your case.

The guidelines in my area are 12 times in 12 months da had it 11 times he has "grown out" of it now he just gets it every march and October occasionally December they remarked that ne is regular as clockwork last time he was at the Dr's

Hi, is she still getting tummy aches too? My daughter was tested for coeliac and we discovered she has a primary immune definitely. Explains why she had bad glue ear, tonsillitis, etc and always getting poorly. Might be worth asking for them to do a blood test to look at her immunoglobulins next time.

@Curiouscucumber she has had her immunity levels tested and they came back ok so the Gp is pretty sure the problem is just her tonsils. She does get bad stomachs a lot but it's only when she's on the antibiotics now (which is pretty much all the time) so we're giving the probiotics to hopefully try and help that

@Isaidnoalready in our local trust it is 7 episodes in 12 months, we are nearly at double that in 6 months and they still want her to wait a year

But if you count back a year she’s still exceeded the criteria so it seems bizarre they want to wait.

My youngest had an 'urgent' op to remove his tonsils and adenoids. Despite being on the urgent list there was an argument between the hospital and the funding authority and it took 6 months... but, it should have been done urgently because he had it done for sleep apnea. Have you recorded her sleeping to see if she stops breathing in her sleep? That might help you push for more urgent help.

Afraid my experience with private consultants is also that for them to help with NHS lists it needs to be a consultant for where your GP has referred you to. If you Google ENT at your hospital they should have a list of consultants, and I then checked for each which hospital they practiced at privately. Depending on the doctor they don't seem to always to show immediately if you just search by hospital.

However, they should be able to at least be able to give you advice about what you can do in the meantime. We are part way through the private process for DS with glue ear /adenoid issues. He's only had tonsillitis 4 times in the last year, and if he'd been bigger (he's only 3 and only 13.5kg) the consultant was talking about taking them out so I think your private consultant would definitely be happy to do it. Even if you can find the money, just to flag private hospitals have surgery wait lists now too (knock on from NHS ones). We were told 6-8 weeks but 4 weeks after the 'press go' consultant appointment we're still waiting for a date so I think it'll be significantly longer than that.

I've been thinking about your DD since posting yesterday.
I'm 57 and the criteria then was so much lower I had 3 bouts and I was told if I had another I'd need my tonsils removed!
I think PALS is a good shout, perhaps they could liase with the CCG in your area( who fund) as she definitely meets the current guidelines for removal and prescribing constant antibiotics is not recommended these days either

Look up the guidelines for your local NHS trust. In my area for example it is 7, when they have been treated( with antibiotics) per year

Apologies you already know this

@uncomfortablydumb53 in our area it's 7 bouts to get put on the general waiting list. This is what she's been put on but we are trying to argue that she's had 12 infections in 6 months, so potentially in a year will have 24 infections so surely that should qualify her for the urgent list. It's just so frustrating that they don't seem to care!

@uncomfortablydumb53 I will definitely try contacting pals and the ccg though so thank you for that suggestion!

I wish I could think of more to help
Your poor DD is missing out, both quality of life and educationally

I literally spend most of my days wishing I could do more but I just keep fighting and fighting and getting nowhere. Every Gp we have seen has said she's not gaining weight or thriving because her little body is using everything it has to constantly fight infection. I wish I could just make it go away for her!

Is there any way you could afford to pay for her to have the tonsillectomy privately? Any grandparents who could help maybe?

Your poor dd.

Have just rejoined mn as am so sad for you….

other ideas…

ring your MP.

write letter to PALs.

write to the local paper.

write to the daily mail or the sun.

start a Twitter account and post daily about your daughter in the hope it goes viral.

I’m so sorry you are going through this and I’m so sorry for your baby.

you sound tough and your going to have to be tough. You’re going to have to fight for your daughter. Don’t be under any illusions that the people that scream the loudest in these situations will get what they want. Please scream loudly. This is an unbearable thing to read. Keep going!!! We are here to support you.

I would also look at the link between psoriasis and tonsillitis and see if that argument helps speed them up at all.

Also, look up the complaints procedure for your nhs trust. Start a complaint immediately. You are complaining about being non urgent not your care (although that hasn’t been great you need to prioritise her tonsils coming out).

the reason you need to do this immediately is because you can’t go to the health ombudsmen until you have completed this process. You would not believe how quickly things move when you make a compliant to the ombudsmen (I have done about 6/7 complaints to various ombudsmen and have won all but one of them). People will tell you continually along the way you will not win - do not listen to them!! You can win.

Also, you should document every single day of her life, every meal eaten and missed every temperature, every crap sleep.

also Don’t worry about her education (and I say this as a teacher who is obsessed with childrens education), you cannot worry about everything at the moment. Just focus on her health.

I would genuinely donate to a go fund me if you started one for her operation privately. Its absolutely ridiculous to make her wait after so many bouts of it in such a short span of time. You shouldn’t even have to think of going private or raising any money, nor should you have to endlessly complain. The NHS really has gone to shit, that coming from an employee.

Also, are you under a specific consultant yet, a department or several hospitals? Who has your referral been made to?

I would make best friends with the secretary of whichever consultants you are under or might be under. I would ring them and tell them your story and just say you would be ever so grateful for anything they can do for you. I would keep a list and I would ring them weekly. Hi me again Mrs smith, just ringing to see if there’s any way the waiting lists could be wiggled, dd still ill, any support at all you can give me would be so much appreciated, I’m so grateful for all your help.