To think I'm right and the doctors are wrong?

[Rabbitpoop]

DD is 13yo and has had really bad nausea and stomach ache for 10 days. Shes been off school the whole time and very little appetite. GP thought it was appendix related so sent us to hospital. First surgeon admitted us and said seems like appendix as she only has pain in the exact area of the appendix. Put us on the list for surgery.

Saw another surgeon who said he wanted an ultrasound first. Fair enough. They couldn't see her appendix during the scan but no obvious signs of anything else wrong so surgeon passed us to paeds.

Paediatrician came in and said it is constipation before he even examined her. She isn't constipated at all and the pain is only on the bottom right side in a specific area. I questioned him and pushed back quite a lot as I'm 100% sure this is not constipation. She's had no change in her bowel movements. Paeds said there's no sign of appendicitis in her blood tests so it's unlikely to be appendicitis.

I looked up the NICE guidelines and it says that you can't rule out appendicitis by blood test or ultrasound and that it can present differently in different people. It seems the only real way of telling is laparoscopy/surgery but the surgeons won't do it as she's not writhing in pain.

I don't know what to do. I'm sure it's not constipation and that it's something to do with her appendix. They said they wouldn't give antibiotics either as there's no sign of infection.

I'm worried they're just going to tell us to go home and she'll continue to be off school, feeling sick, barely eating and with a stomach ache.

Any advice?

When things r not clear and the person still has abdominal pain they shd be given a laproscopy. it is the only way to confirm what is happening.

DD had appendix out aged 4. She was very poorly within 48 hrs. Temperature, severe pain,that meant she couldn’t stand, high pulse rate.

Persist. I had appendicitis as a child a long time ago . GP insisted it was, hospital doctor said constipation. GP insisted I was kept in. The next morning I was in the operating theatre.

@Sickofthesoapbox24

YABU

She has had an assessment by the correct sub-speciality, negative relevant blood tests and imaging. NICE are exactly what they say they are GUIDANCE not a strict rule book.

The clinical suspicion is this is not appendicitis and that’s based on clinical assessment and relevant clinical investigations.

There are many meta-analysis out there on the predictive negative value of normal WCC and CRP in acute appendicitis especially this far on I. The clinical course. NICE guidance is often quite far behind the evidence.

The doctors are comfortable adopting a watch and wait approach which sounds completely reasonable in the context. They want to avoid giving your child an unnecessary operation. Negative (I.e. unnecessary) appendicectomy rates are still around 15%!

The rate should be zero. UK's really bad at imaging.

[quote Sickofthesoapbox24]@GirlOfTudor

In response to your comment, mainly cos my knickers get in a bit of a twist about imaging modalities.

Sorry but you’re not quite right.

1. Ultrasound is actually very useful in children in diagnosing appendicitis and excluding appendicitis. Less so in adults.

In addition CT carries a radiation (therefore future cancer risk) that is often deemed unacceptable in many cases with children that’s why they get an US and in some centres an MRI if the US is equivocal.

Although CT can be helpful if the diagnosis is unclear as it’s a good modality to pick up the mimics of appendicitis.

1. A number of large studies have now shown that a negative CRP and WCC 24 hours after symptom onset is at least 97% (some even cute 100%) negative prognostic value for appendicitis I.e it’s pretty good at excluding it.

But obviously everybody worries about the tiny percentage that will be missed particularly if the patient isn’t understanding as nobody wants to get sued.

1. During the pandemic many people of all ages with uncomplicated and complicated appendicitis were treated with just antibiotics and no appendicectomy with good outcomes and lower complication rates. The omentum is pretty good at it’s job even in perforated appendicitis.

This is obviously not the population that have appendicitis secondary to appendiceal/cecal tumour which tends to be the older population.

1. Although complication rates of appendicectomy are low, many studies only look to one year out comes which largely misses people coming back many years later with adhesions secondary to surgery that can cause big problems. Obviously, there’s an argument for the inflammation alone to cause adhesions so it’s tricky to unpick that argument.

However, there’s a reason many doctors including surgeons say ‘avoid the surgeons knife and you’ll live a long and healthy life’.

In conclusion, appropriate clinical assessment, blood results and ultrasound combined are very good for assessing appendicitis likelihood in children. People are often scared of missing the tiny percentage that can’t be ruled out by these as nothing is ever gaurenteed hence the super high negative appendicectomy rate when the sample is sent to histology.

P.S in the UK we call it an appendicectomy not an appendectomy.[/quote]
Great post @Sickofthesoapbox24

OP
I get that u are a frightened parent
But you need to start building rapport with the health care team
You don’t want them making clinical decisions based on the path of least resistance from you as opposed to what is clinically indicated for your daughter

You are tired stressed and scared and angry
But you sound like an absolute nightmare to communicate with
Regulate your emotions and you can start thinking more logical

OP I had an almost identical experience a couple of years ago. DS had pain and nausea for days, eventually acute enough that we went to A&E. Pain started central on tummy button then moved to lower right quadrant, just like appendicitis. No changes in bowel movements, wind, bloating etc. Absolutely nothing to suggest constipation or digestive issues. Doctors suspected possible appendicitis but tests didn't show it up. They then suspected constipation. It just didn't add up. I felt like you - that I was screaming and no one was listening.

Turns out it was - constipation. They were right. DS had a build up of small lumps of impacted poo, probably caused over months or years, which had never been large enough to affect his bowel movements, but had eventually started causing pain. He was put on a (very unpleasant) two week deimpaction regime, taking laxatives 10 times a day to fully clear the bowel. It worked - problem cured.

Of course, your doctors could be wrong. But just bear in mind that even if what they're saying seems to make no sense to you, that doesn't mean it doesn't make sense. They're doctors, and although they're not infallible, they know a lot more than their patients. I truly don't mean that in a nasty way, because initially I felt exactly the same as you do. (Incidentally, the most senior doctor we saw put a lot of faith in the old fashioned 'hopping test'. If a child with stomach pain hops on one leg and the pain doesn't instantly become much, much worse, then it's probably not appendicitis.)

If it is her appendix, trust me, you will know. She will be in a LOT of pain (think labour). It does sound like you’re overthinking it. She doesn’t need an op now, no way.

If it does progress and is appendicitis they can deal with it then.

There is also a nasty tummy bug going round with more pain than vomiting.

You do sound a bit over anxious about this OP

OP sounds like you are having a dreadful time with all this uncertainty.
She wasn’t being asked to isolate as this is only for planned ( non urgent ) surgery.
The reason they said constipation is that the caecum ( the largest bit of colon) is next to the appendix and this is what dilates the most and is tender .

The other things it could be include that she has had an ovarian cyst that burst (so no cyst to see) . The fluid irritates things and can cause pain in the lower abdomen.

Could also be mesenteric adenitis. Swollen lymph glands due to a viral infection.

Or Blood from her period can sometimes bleed backwards into the pelvis and irritate bowel.

I hope you get to the bottom of things soon x

OP have you asked to speak with the Consultant. In your circumstances I would request that. They are unlikely to say no but if they do simply say neither you nor your daughter can consent to anything, even leaving, without that discussion. In my experience there is absolutely no point trying to establish accurate clinical facts with nursing staff.

I’m coming in from the other side of the coin. When I was 11 this happened to me. Scans, blood work all fine. My mum insisted that it was my appendix as we had a history of appendicitis turning nasty pretty quickly. The doctor said ‘there is nothing wrong with that appendix, she is trying to get out of school’. 8 days later, 2 days into the summer holidays (so wouldn’t have got me out of much school!!) it burst, I nearly died, I was in hospital for 10 days and in a wheelchair for weeks after.

Appendicitis is often missed. White blood cells aren’t elevated in up to 30% of people. Scans are good for detecting but still miss around 4%. Lots of doctors on here commenting - I think the NHS is amazing, and our doctors are good at what they do, but you aren’t always right.

Hope all goes well today and your daughter is feeling better soon OP!

I think I'm going to step back from this thread as being told I'm a nightmare to communicate with when nobody has communicated with me at all and that I'm over anxious and that I'm not advocating enough for my child is making a bad situation worse and not helping.

Just to reply to your aibu... i reckon that the doctors are right.
Of course there are stories of cases where appendicitis was missed, so there is that tiny chance, but that's always the way - the decisions are made based on what's probable, and it sounds v unlikely that it is appendicitis.
You might say 'well what else could it possibly be?', but there are lots of answers to that (including constipation).
I think the doctor who is in error here is the one who agreed to arrange an operation. He may have felt like you were insisting, but he shouldn't have agreed imo. and having agreed he shouldn't have disappeared!
in your shoes i'd be asking what to do if it is constipation, and then go home, get your dd some food and water and rest.

You are not over reacting and you are not a nightmare to communicate with either - you know your daughter.
My DD wouldn't be here if I'd just accepted what all the consultants and doctors were saying.
Ignore anyone saying you're being difficult, you've been treated absolutely appallingly.

But you need to start building rapport with the health care team
You don’t want them making clinical decisions based on the path of least resistance from you as opposed to what is clinically indicated for your daughter

Oh come on, how do you "build rapport" with a team who don't talk to you and pass you from pillar to post when each new person you speak to has no information? Its the team's job to "build rapport" and actually communicate and explain.

The OP is a "nightmare" for wanting to understand treatment plans for her daughter? Really?

I would imagine she knows as well as all of us that whilst "watch and wait" can be the right thing to do its also the most popular method of healthcare rationing. She also seems to be getting conflicting information from different doctors/departments/nurses. Again that is a team responsibility not the patient's.

@badger2005 you should not be advising the op to take her daughter home!
That could end extremely badly.
A doctor wouldn't "agree" to surgery on a whim, and your opinion on whether he should have agreed is redundant when you are not a surgeon.

@Rabbitpoop

I think I'm going to step back from this thread as being told I'm a nightmare to communicate with when nobody has communicated with me at all and that I'm over anxious and that I'm not advocating enough for my child is making a bad situation worse and not helping.

You get some vile people on here OP. They just want to stick the boot in because it makes them superior and they forget there’s an actual human being on the receiving end.

Of course you’re worried about your DD, of course you want them to do something about it, and sometimes medical staff are wrong. I hope the surgery goes well and they get to the bottom of it.

I have read every one of the ops posts and see no indication she is a nightmare to deal with or can't communicate or build rapport. In the ops shoes I'd have been a lot more assertive days ago and would have insisted someone with an experienced and competent overview of the case had discussed the possibilities and reasons for test with me.

It sounds as though the ops daughter and the op have been mercilessly messed around from start to finish. Hospitals need to up their communication and ensure it is polite and accurate at all times.

OP I’ve read all your posts and I feel so sorry for you and your daughter. At no point do you sound remotely like a nightmare or over-anxious, you sound tired and worried and stressed just as anyone would be in your situation. I can’t believe you turned up for surgery with your daughter nil-by-mouth all night and then had to wait 9 hours in A&E! I’d go out of my mind. I hope you are both ok and that you get the answers you need very soon.

She's 13?
Has anyone ruled out a gynaecological cause?

Op drs would not operate just because a parent has said that they want them too so don’t worry about that. I hope you have managed to get some proper food and drink.

@Rabbitpoop

I think I'm going to step back from this thread as being told I'm a nightmare to communicate with when nobody has communicated with me at all and that I'm over anxious and that I'm not advocating enough for my child is making a bad situation worse and not helping.

If you've been on mumsnet for a while you'll know. There is a twat on every thread.

You don't sound difficult to communicate with. The hospital you're in sounds pitiful. You have lots of support here and many people have been through similar.

How is she this morning?

I'm so sorry have read all your posts. You're advocating for a child, keep it up.

I hope you manage to get some answers today

Don't step back. I totally understand your frustration and concern. We recently had a family member in hospital in a serious condition. Whilst they ultimately got wonderful care, the amount of sheer waiting, waiting, waiting to find out what was happening. To be moved to a ward. To understand what the treatment was going to be. One person saying one thing, another person saying something completely different. Add in the exhaustion from not sleeping, not eating well, constant at least low level stress, sometimes high level stress - it is utterly draining.

Hang in there. Be quietly persistent.

We came to recognise that ultimately the care is given but the process of getting there can be nightmarish indeed.

@FirewomanSam

OP I’ve read all your posts and I feel so sorry for you and your daughter. At no point do you sound remotely like a nightmare or over-anxious, you sound tired and worried and stressed just as anyone would be in your situation. I can’t believe you turned up for surgery with your daughter nil-by-mouth all night and then had to wait 9 hours in A&E! I’d go out of my mind. I hope you are both ok and that you get the answers you need very soon.

Just echoing the above. I do hope that your daughter gets relief from the pain, and that everything gets sorted out.

Sending you a you must be so exhausted and worried.