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.

Has anybody checked to see if she has an allergy to the antibiotics? Is the pain on the lower right, that is where her appendix is.

How are things this morning OP?

I'm just quoting this as it's really good advice so i hope the OP has seen it.

With so many antibiotics there is simply no way she has a healthy gut. If I were the OP I'd move her directly to a paleo diet with no sugar and fermented food every day (this is not a weight loss diet for the avoidance of doubt!) and probably take her out of school for the time being if she keeps getting sick there. Your poor dd needs a total reset.

Op - what is the condition on her scalp that you mentioned? Is it an autoimmune condition e.g. psoriasis? Please be aware that autoimmune conditions often come in clusters ie having one makes you more likely to develop another one. I say this because both Crohns and celiac disease have been mentioned on this thread.

I'm sorry the doctors have been so useless. Wishing you and your daughter the best.

Thanks for the comments. The condition on her scalp isn't psoriasis as far as I'm aware, I think it's a type of dermatitis.

We have heard back from the drs (well the receptionist) today to say that her blood tests are clear. I know I should be happy but I just feel like we are back at square one! I'm going to ask for her to be referred to paediatrics as I just don't think her getting poorly this often is normal.

OP that is actually really good news as it means she doesn't have appendicitis or sepsis or meningitis brewing - they show up on blood tests as high infection markers.
Sorry that she's still so under the weather though. I really hope she gets a break soon. If she has recurrent uti it's worth looking into being referred to the centre at the Whittington hospital in London who have a special clinic for recurrent uti

Ask for a print out of the full results.
Read what tests they have done, compare that to what they should have taken them for (generally stuff like full blood count and inflammation markers such as C-reactive protein (CRP) and interleukin-6 (IL-6) and research the actual levels they show.
I've had several blood tests over the years which show a thyroid problem, but because it's not the normal thyroid problem, I have been told over the years that it isn't a problem, when actually it could be a problem, just not with the standard 'wrongness' a thyroid test normally shows.
The full print out should include the actual lab ranges alongside it and if you Google each test you will get a summary of what it could show if out of range.
I love looking into this kind of stuff so would totally be up for helping.

ohnoohnoo

I'm so sorry you still don't have any answers.

You say her blood tests are 'clear' but there are loads of things that can be tested for, so while it may be that the things that were tested for are negative, it might not have been tested for the right things, hope that makes sense. Is there any way you could find out what they actually tested for?

A relative had a giardia infection some years ago, but keot being told that stool samples were clear - because they weren't testing it for giardia!

Similarly I had a really very nasty infection some years ago, similar thing to the above - swabs were taken and sent for tests, I was told it was all fine (but I knew it wasn't) because again a standard panel of tests were done, but not the specific test that would have picked up the bug that made me incredibly ill.

That's a great idea thank you, I'm going to ask for a full print out of the results and will probably be asking on here to see if they are normal! Haha.

I've read that with coeliacs it isn't always picked up on a blood test so I will be asking them about that aswell.

The coeliac blood test takes over a week to come back so they may not have it yet. Also you’re right, it is often not picked up on the bloods.

Just to update for anybody still watching this thread. We spoke to a different Gp on the phone today who said that he thinks she needs an urgent referral to paediatrics because of how much worse things have gotten recently. He's going to phone back to confirm the referral tomorrow so hopefully we will get seen soon!

@ohnoohnoo Just following up on your comment about ceoliac.

Blood tests can give false negatives.
The next step is a biopsy of the intestine.

As a PP said, for these tests to be accurate, gluten should not be removed from the diet.

However, it will depend on how soon your might get the next test ( possible biopsy.)

We have a lot of intolerances in the family and I KNOW that coeliac is not that (it's an auto immune disease.) Having said that, me and one of my children had a lot of tests in the past- skin prick tests and elimination diets- for allergies and intolerance.

If (and I mean if!) your DD is not seen by a consultant soon and they move on with testing, it may well be worth reducing/ stopping gluten if she still have tummy pains.

You can check on the ceoliac support website how long you need to reintroduce it before any biopsy and further tests.

You should also push for the bacteria they find in her tonsils (swabs needed) and her urine.

Her immune system will be buggered with all the ABs so look at the other advice here on improving that.

We have heard back from the drs (well the receptionist) today to say that her blood tests are clear.

As a PP says this is meaningless.

What have they tested?
What have they NOT tested?

you are entitled to copies of all tests, in full, so ask for them to be printed off.

That’s great news. I really hope that this gets things moving and she gets seen by a specialist soon. And we’ll done for being persistent and keeping acting on her behalf when you know she isn’t right. Bravo.

Great news OP. I asked my (private) surgeon the other day whether I would have qualified for my surgery in the NHS. He said absolutely, the bottleneck seems to be people being referred from GP to Consultant (not GP bashing at all realise there are multiple factors) Once that referral happens things can move much more quickly.

Really hope this is the case for your DD @ohnoohnoo

Finally! 👍

That's great news OP

at last. It is worrying when they get ill again and again and again. poor dd and poor you too.

@ohnoohnoo that's good progress. Glad you finally got a sensible person !

Obviously keep pushing for referrals/answers but just for some reassurance, DD had a period like this when she was 6. One infection after the other for a good 9 months - year. Then it slowed down and since age 8 I don't think we've been to the GP! So hopefully it's similar and it's just a case of not fully healing and building her immunity up before the next infection strikes.

That’s good news! Hopefully you can make some progress now.

That’s good to hear. Hope you can get to the root of the problem. Good luck.

That is good. It may take some time to resolve if it is issues like constipation or antibiotics causing the issues. You can just get into a cycle with infections where they lower your immune system, so you constantly get more. So she may need help to break that cycle.
It is looking increasingly likely that it is not anything major which is good news.

So pleased you seem to be getting some movement OP!

Glad to hear you have another referral. Never be worried to take her back to a&e if she takes a turn for the worst.
How is she this week?

Not sure if anybody is still following this thread but thought I would update. DD has got tonsillitis again, not quite two weeks since finishing her last antibiotics for it. I saw a new Gp today who said that he thinks all her illnesses are stemming from her recurrent tonsillitis. He said he little body just isn't getting enough time to recover from it which is then making her prone to catching other things. The fact that she is getting it less than every two weeks, it causes her to snore and she is now experiencing sleep apnea is apparently enough now to refer her to get her tonsils and her adenoids out. We've got to go and see this Gp again on Tuesday next week so he can check if it has cleared up and then we are going to discuss the plan going forward but he is definitely pushing for them to be removed.