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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

360 replies

Rabbitpoop · 15/03/2022 15:40

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?

OP posts:
Mickarooni · 17/03/2022 08:47

The OP isn’t poorly communicating or a nightmare!! For goodness sake. She’s concerned about her child. Based on the bloods and the length of time and what meds have said, I’m not convinced it’s the DD’s appendix but equally, this child is in pain and should be supported. It’s up for the medics to be the clear communicators.

Theluggage15 · 17/03/2022 08:49

You are doing really well OP and stepping up for your daughter. It’s the hospital that is a nightmare not you. Hope you get some answers very soon.

ilovesushi · 17/03/2022 08:50

I hope you and your DD are okay. It is a hideous no man's land before you get properly diagnosed trying to deal with rubbish communication, nothing joined up, repeating things again and again to different people, nothing happening, endless delays and your child getting sicker and sicker.

Schmz · 17/03/2022 08:54

99.9% of posts here are very supportive to the OP

A very few have pointed out another perspective

As far as I can see I’m the only one voicing the opinion that OP comes across as a nightmare to communicate with

And on the basis of that, OP threatens to flounce off …

This is what I mean -
If she doesn’t get a unanimous agreement
Which you won’t get in healthcare -
Then she’s all riled up !!

The OP’s understand histrionics are unhelpful and in my opinion will be driving health care professions to think what is going to head off a complaint as opposed to what their clinical judgement suggests …

OP flounce on that !! You DO sound a bloody nightmare !!

ilovesushi · 17/03/2022 08:56

No she doesn't. She is a worried mum who is stressed and exhausted.

Sickofthesoapbox24 · 17/03/2022 08:56

@Mango101

Well no because it’s not ever possible to have a 0% rate with any of these things. The fact you’ve said that makes it obvious you don’t really understand the issues at play.

The UK isn’t really bad at imaging at all especially in an emergency context. Non-emergency imaging has a wait which is the major fall of the NHS at the moment - the wait times.

The negative rate is so high because of situations like this where the doctors have done the tests explained them and the patient pushes and says they’re not happy with watching and waiting on that small chance. The only way to actually exclude it is to go in take the appendix out and send it off to histology. Then it can be looked at down a microscope and it can be decided. That doesn’t mean it’s the right thing to do.

People saying get a CT scan are misguided. CT scans have a cancer risk in everybody due to the radiation. Children absorb radiation much more than adults and likely liver longer to see the affects. For every 1800 kids you CT scan you’ll give one of them cancer they wouldn’t have got otherwise. That’s why we don’t do it and we use bloods, clinical assessment and US. In cases where these are equivocal we use mri. Yes in isolation all these things are bad at diagnosing appendicitis but together they’re pretty good.

Doctors know that they can be caught off by the tiny percentage and they plan for that. Medicine is literally about weight benefits of investigation and treatment vs risks from investigations, treatments and missing something.

OP it’s obvious the issue here is a breakdown in communication. Like PP have suggested ask for a chat with the consultant in charge of your daughters care so they can inform you of the risks and benefits to make a decision. It’s not a doctors job to decide what’s best for a patient but to present the risks and benefits of all the options so a patient can make an informed decision.

AiryFairyLights · 17/03/2022 08:58

@Rabbitpoop I’ve read all of your posts (not ask the replies) and the one thing I feel I have to say is TRUST YOUR INSTINCTS - it’s bloody hard, especially when your guy is telling you one thing and drs are telling you another or in your case not telling you very much at all!
Hopefully you get some answers today x

CinematicNightScenes · 17/03/2022 09:00

On a post like this, where someone is clearly in a highly, highly stressful situation, if you don't have either anything helpful or supportive to add then just stay away. Criticising someone at a time like this is reprehensible.

@Rabbitpoop you are right to be concerned, you are advocating for your child - hang in there.

thedancingbear · 17/03/2022 09:04

[quote AiryFairyLights]@Rabbitpoop I’ve read all of your posts (not ask the replies) and the one thing I feel I have to say is TRUST YOUR INSTINCTS - it’s bloody hard, especially when your guy is telling you one thing and drs are telling you another or in your case not telling you very much at all!
Hopefully you get some answers today x[/quote]
I agree. You should ignore the medical experts with their outstanding academic records, and decades of training and experience, and their hugely advanced equipment, and trust your spidey senses.

I hope you get answers too, OP. But they will come from medical professionals, and not your waters.

EllaPaella · 17/03/2022 09:04

It all sounds like an absolute shit show from the hospital, appalling lack of communication. OP is anxious and worried about her child as anyone would be.
Surgeons and doctors giving conflicting opinions, nurse saying DC is to go home then suddenly no, surgery in the morning.
I think you should speak to PALs if this carried on any longer.

badger2005 · 17/03/2022 09:06

@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.

Sorry - of course I don't mean to over-ride the medical advice! But if I've understood right since they have come in several medical professionals have told the OP that she can take her daughter home. So in her shoes I think I would do that.

Schmz · 17/03/2022 09:07

As @Sickofthesoapbox24 points out it is very clear that a breakdown of communication has occurred-
OP’s understandable distress could corner the health care professions into factoring her distress into clinical decisions ….
Which is why I suggested trying to regulate the distress and build rapport with the team -
They are all on the same side - wanting a good outcome

Bobbins36 · 17/03/2022 09:14

We had a v similar thing when DS was around 7/8. We all thought appendicitis, GP sent us packing to hospital QUICKLY and all a bit fraught and he was in a lot of pain. Turned to be mesenteric adenitis - inflammation of the membrane covering the abdominal cavity, so very close to the appendix and presents with similar symptoms. Worth ruling out both tbh.

Good luck, it’s horrid when they are poorly x

Stroppypeople · 17/03/2022 09:17

@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.
Bless you . I have just read your whole thread and you do not sound tricky or hard to communicate with! I could have written this about my 17 year old son a few years ago. Months of RIF pain that would come and go ,nausea and he like your daughter very stoic and not a drama lama . He eventually was admitted right in the middle of his A levels mocks! He sat on the ward revising and I thought he would be sent home because he was so calm . Anyway he did go to theatre and had a manky,infected appendix removed! So good for you for advocating for your daughter…I hope she is better very soon 💐
CinematicNightScenes · 17/03/2022 09:17

The best outcome would be that all investigations find nothing - there is some benign or unknown cause for the pain and symptoms.

If the medical and surgical teams were of the view that there was no cause for concern at all (panic over nothing) then I don't think Op's daughter would have been admitted (I am not a medical professional).

My recent experience in a very large hospital is that everything takes AGES. Communication is poor and/or delayed. No criticism of staff as clearly run off their feet and overwhelmed and seemed to be working on a fire fighting basis.

I found it is case of being quietly persistent and endlessly patient. You will get seen and will get answers.

DomesticatedZombie · 17/03/2022 09:24

Really feel for you, OP. Hope you're okay and your daughter is seen soon and you get a good outcome.

Waiting in a hospital when you're tired, stressed, hungry and frustrated is hellish. Flowers Brew

Stroppypeople · 17/03/2022 09:30

@Schmz

99.9% of posts here are very supportive to the OP

A very few have pointed out another perspective

As far as I can see I’m the only one voicing the opinion that OP comes across as a nightmare to communicate with

And on the basis of that, OP threatens to flounce off …

This is what I mean -
If she doesn’t get a unanimous agreement
Which you won’t get in healthcare -
Then she’s all riled up !!

The OP’s understand histrionics are unhelpful and in my opinion will be driving health care professions to think what is going to head off a complaint as opposed to what their clinical judgement suggests …

OP flounce on that !! You DO sound a bloody nightmare !!

I think you are reading the wrong thread ! Where has op been a nightmare to communicate with ?!!! Everything she has said makes complete sense . Am guessing you are a HCP…you come across as very defensive!
RantyAunty · 17/03/2022 09:31

I really feel for you and your DD. I hope they get it sorted out soon. Flowers

It's a perfect example of how women and girls are fobbed off by health care.

comfortablyfrumpy · 17/03/2022 09:34

I hope you and your DD get some answers soon, you must be worried sick. Flowers

RosesAndHellebores · 17/03/2022 09:35

The problem with blaming poor communication on uber busy and overwhelmed staff is that poor communication has been ever thus. The communication needs to Improve.

CinematicNightScenes · 17/03/2022 09:40

@RosesAndHellebores completely agree, I think a lot of complaints against the NHS could be resolved simply with better communication.

We found in hospital (for very serious condition) that people just sort of randomly turned up, did something and left - and if you asked what would happen next they wouldn't know. Then someone else would turn up and do something and on it went. No time frames given.

It would be so much better if they at least provided an outline of what would happen - even if they said 'it could be several hours time etc'

People would then at least know. It is the endless sitting, waiting around with no idea of what is going to happen next or when it will happen.

JaneyJimplin · 17/03/2022 09:48

Hope you've made some progress op

Hotpinkangel19 · 17/03/2022 09:51

Not seeing the appendix on a ultrasound is not uncommon so don't worry about that.

Zilla1 · 17/03/2022 09:54

The problem with 'Trust your instincts' is the self-selected sample and other biases. Most posters will talk about how they knew they were right and how it took far too long for a diagnosis and effective treatment.

For those that want to consider an alternative perspective, IME what % of serious, non-obvious undifferentiated presentations do you think the patient and Dr Google are right and in which the above sample might sit? Anecdata as I can't find rigorous research but c1%. And IME a greater proportion of patients with serious, undifferentiated presentations would end up dead if the HCP had done what the patient initially wanted rather than a robust diagnosis and treating the actual condition?

In this case, how many healthy patients would have had the risk of a GA and surgery to remove a healthy appendix for each time the patient had an appendicitis requiring surgery and the patient just knew? For how many is it a different problem entirely? How many times does the appendicitis settle and the medic's advice turn out to be correct (btw it did for my family in similar circumstance)?

I'm not saying that HCPs always get it right nor that parents shouldn't advocate for their children.

Bromse · 17/03/2022 09:56

Rabbitpoop, please do come back. I for one want to know how things are with your daughter and I know that is true for other posters.

You've communicated your concerns on here extremely well.

Doctors are not always right, if they were there would never be conflicting second opinions. Sometimes it is difficult for them to decide on a course of action based on a patient's symptoms.

I do hope your daughter's problems are soon resolved.

Our role is to be supportive of anxious fellow posters, we are not personally in their situation. Of course we don't know all sides but we do know when someone is anxious and needs a hand hold.