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.

Thank you all. It really means a lot to have such support on here. She's spent the whole day in tears today doubled over in pain in her stomach from the antibiotics and crying that she can't eat due to the pain in her throat. Despite calpol and nurofen her temp hasn't gone below 41. But then I can't take her anywhere because every time I've taken her to a&e I've been told it's 'just tonsillitis' and there's nothing they can do.
I'm just so bloody sick of the fighting. I want to be able to tell me little girl that I can help her get better. I know this may sound overdramatic but its so hard seeing her poorly every 2 weeks, to the point she can't do any normal activities at all.

This is what I've been doing with the ENT department where she's been referred but they just keep telling me it's not urgent. By this point I'm honestly wondering how bad something has to get to be classed as urgent!

I agree this is a really good idea. The secretary helped me get the Consultant to review my DC’s case and it was fitted into a cancellation (was already on the urgent list) after Covid meant all but life threatening ops were cancelled for months so we’d been waiting a very long time.

I'm sorry if this has been mentioned before and I know lots of tests have been done but dairy intolerance doesn't always show up - have you tried removing all dairy from her diet? My son had similar recurrent ear / throat infections , I was at the end of my tether but tried him without dairy and he was so much better!! Still needed surgery but had far fewer infections and was much better in himself. Hopefully worth a try for a few weeks while you're waiting for an appointment? X

You don’t sound over dramatic at all OP. It must be awful feeling like you’re just hitting a brick wall all the time. I think the advice to document things each day is good advice. I’d also carry on with regular contact with the GP so there’s a record of her being so unwell still. Maybe ask the GP directly what it would take for her case to be considered as urgent? I also agree with making a formal complaint that she’s not on the urgent list.

She had a dairy allergy when she was born but slowly grew out of it and has done the dairy ladder/had all the dairy intolerance tests since then that has shown it has gone but thank you for the suggestion. Like I say any suggestion is really appreciated

Yes I think I'm going to try and make an appt with the Gp tomorrow and find out how I go about making a complaint with the hospital etc, they are in full agreement with me about her needing to be seen urgently so hopefully they will be willing to help!

I know it was mentioned before but do treat her for threadworms too.

What probiotics is she on?

That’s great that the GP has been supportive.

you don’t have to ask the GP about how to make a complaint - just do it. They might even try to put you off (it won’t make any difference - ha ha). Look up your hospitals website and there will be a how to make a compliant button. Also complain to their trust.

dont worry about the letter being perfect. Just write down the basic facts. 5 paragraphs tops. Be polite and factual.

Hi OP. This sounds pretty traumatic for you all. I have quite a lot of experience with recurrent tonsillitis having had one child go through this and have his removed and my second is now in the same boat. In my experience tonsillitis does cause severe abdominal pain and high fevers, for both of my children it’s only ibuprofen that actually works for them, so I’d be really tempted to give that (especially now the medics all seem to agree that this is tonsil related).

regarding eligibility, I think it’s both number of recurrences and duration, if I recall it’s longer than 9 months, but sounds like you could use the sleep apnoea argument to expedite things (if only you could get the appointment).

you mention she’s been on Co-amoxiclav every time, have they ever done a throat swab? That might be a good idea because tonsillitis is caused by a biofilm and as such is very hard to get rid of. If the bacteria are only partially sensitive to the co-amox that won’t be helping.

tonsillectomy was a game changer for my older child, hoping it will be the same for my younger.

I would also keep a record of how much weight she is losing, OP. And how many courses of antibiotics she us given. Weigh her every week and point out repeatedly that she is under weight and failing to thrive because of the frequent infections and subsequent antibiotics.

Thank you for all the advice. I managed to get a phone appointment today with the Gp that originally listened to us and referred her to ENT. He was absolutely disgusted that she still hasn't been seen. He actually went off on a bit of a rant about how bad the nhs currently is. Anyway he is going to write a new letter this morning and send it to the consultant that he knows in ENT urging them to see her as a matter of urgency.

Obviously I'm hoping that will work but I'm not holding my breath because we seem to hit a brick wall at every turn at the moment. He said that if that doesn't work he would urge me to try and get it done privately (he obviously expressed that he doesn't believe we should have to pay for it and said he would never normally urge somebody to do that) because the impact it is having on her life is huge.

I'm so glad the GP will write to the consultant and I sincerely hope Your DD's tonsillectomy will happen as a result.
It really is outrageous how much her life is being affected.

As a warning, when I had mine out, they said they wouldn't remove while an infection was still active. They gave me a strong course of multiple antibiotics to really clear everything out before removing.

I would complain about the treatments. If they're giving her the same treatment each time and it's coming straight back what do they think giving the same again is going to achieve!?

When you see the consultant take a list with you. A written list you can give them. How many times she has had it, what the treatments have been, but also what the effect on her life has been. How many days off school? How many days and visits to hospital, how many doctors appointments? It makes it clear to them how urgent it is seeing on paper.

@ohnoohnoo, I haven’t read everyone else’s comments - only yours, so apologies if I missed anything or I’m mentioning things other people have covered. I can’t help with the waiting; it’s absolutely awful and I wish your poor DD was able to have the surgery already.

I don’t know if this is helpful; I do hope it is. I know an absolute fuckload about year-long sore throats and the only medication that will actually numb it, no shit, 100%. I have a type of vasculitis that initially caused a bunch of sores in my mouth that wouldn’t heal, and the throat pain was terrible, and that went on for absolutely ages while they tried to diagnose it. And even though I was an adult, I felt very much like your DD! I just wanted to cry because I was hungry but my stomach hurt (because they kept trying to give me antibiotics since the mouth sores kept getting infected) and my throat was horribly painful (from the sores). I know she’s very young, but if she’s old enough to take antibiotics then she should be old enough for a 10mg xylocaine/lidocaine spray for her throat - this is the only medication I know of that is 100% effective, because it’s not mixed with anything else, like most over the counter throat sprays are. This is something even a GP can prescribe. I don’t know enough about dosages for children, but they must have a child-appropriate version of straight xylocaine spray. It might be a little scary for her, but once she experiences the fact that her throat will be completely numb, as in 100% of the pain gone, she may be much more willing to have it sprayed in her mouth and not afraid of it or a small unpleasant taste (to be honest, I don’t really remember it tasting of much, but I’m also not a scared child, so I’m not as sensitive to it). I really remember that time period as before I had xylocaine spray and after; it made such a huge difference in the throat pain. I also think maybe they could give her something to protect her stomach from the antibiotics? I mean, they give versions of Gaviscon and omeprazole to babies in formula, so they must have an age-appropriate version for your DD. My concern is that if she’s experiencing that much pain in her stomach, she may really need some protection in there before it causes damage from something like over-production of stomach acid. I know I have to take omeprazole when I take certain antibiotics even with an adult stomach, because otherwise they’ll tear my stomach up.

It sounds like you’re doing so well trying to advocate for her in the face of a really labyrinthine system. I’m sure it’s so difficult, and I hope it’s worked out soon. Good luck.

@ohnoohnoo, I haven’t read everyone else’s comments - only yours, so apologies if I missed anything or I’m mentioning things other people have covered. I can’t help with the waiting; it’s absolutely awful and I wish your poor DD was able to have the surgery already.

I don’t know if this is helpful; I do hope it is. I know an absolute fuckload about year-long sore throats and the only medication that will actually numb it, no shit, 100%. I have a type of vasculitis that initially caused a bunch of sores in my mouth that wouldn’t heal, and the throat pain was terrible, and that went on for absolutely ages while they tried to diagnose it. And even though I was an adult, I felt very much like your DD! I just wanted to cry because I was hungry but my stomach hurt (because they kept trying to give me antibiotics since the mouth sores kept getting infected) and my throat was horribly painful (from the sores). I know she’s very young, but if she’s old enough to take antibiotics then she should be old enough for a 10mg xylocaine/lidocaine spray for her throat - this is the only medication I know of that is 100% effective, because it’s not mixed with anything else, like most over the counter throat sprays are. This is something even a GP can prescribe. I don’t know enough about dosages for children, but they must have a child-appropriate version of straight xylocaine spray. It might be a little scary for her, but once she experiences the fact that her throat will be completely numb, as in 100% of the pain gone, she may be much more willing to have it sprayed in her mouth and not afraid of it or a small unpleasant taste (to be honest, I don’t really remember it tasting of much, but I’m also not a scared child, so I’m not as sensitive to it). I really remember that time period as before I had xylocaine spray and after; it made such a huge difference in the throat pain. I also think maybe they could give her something to protect her stomach from the antibiotics? I mean, they give versions of Gaviscon and omeprazole to babies in formula, so they must have an age-appropriate version for your DD. My concern is that if she’s experiencing that much pain in her stomach, she may really need some protection in there before it causes damage from something like over-production of stomach acid. I know I have to take omeprazole when I take certain antibiotics even with an adult stomach, because otherwise they’ll tear my stomach up.

It sounds like you’re doing so well trying to advocate for her in the face of a really labyrinthine system. I’m sure it’s so difficult, and I hope it’s worked out soon. Good luck.

I've just had the news we've been waiting for!!! We've been moved on to the urgent list and she's got an appt with the consultant at the end of sept!! I know it will still probably be a wait from then to get them out but at least we are finally being listened to and seen urgently.

Thank goodness.

Hallelujah!

Brilliant news, well done OP, she’s lucky to have a Mum who’s fought for her. Though you shouldn’t have bloody had to!

What do you think made the difference, was it the GP’s intervention do you think?

I definitely think it was the Gp we spoke to last week. He was the only one who listened to us a few months ago and did the referral after us seeing so many other people. He was so disgusted by her treatment when we spoke to him last week so I presume his letter was asking them to see her but also complaining about the treatment and that seems to have made the difference!

Thank goodness for a more positive update. Hope the appointment comes very soon. X