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?

My daughter was like this aged about 10 , sent in for grumbling appendix , diagnosed with constipation when she wasn’t and then fobbed off with a diagnosis of mesenteric adenitis - turned out she had coeliac disease . Hope you get to the bottom of it @Rabbitpoop and your child gets well soon .

"They couldn't see her appendix during the scan".

Then surely the scan needs to be redone?

I would query whether she could have Crohn’s disease, this can present with pain in the exact area of the appendix (right ileac fossa) and can come on quite suddenly and persist like this (obviously it’s a lifelong condition). Has this been mentioned at all @Rabbitpoop?

My husband was told by three consultants that he didn’t have appendicitis until he had a CT scan and then changed their minds after the scan showed it had burst while they were fannying about.
He nearly died, thanks to their incompetence (this was pre Covid)
Keep on at them until you know one way or the other.
I’m not bashing the NHS as the staff are over worked and under paid - I have had some excellent treatment from them but this was unbelievable.

@Oblomov22

"They couldn't see her appendix during the scan".

Then surely the scan needs to be redone?

I wondered that too. They just kept repeating the scan didn't show anything amd if it was appendicitis the scan would have shown something. This isn't what the NICE guidelines say. I asked about an abcess and they said that would have shown in the bloods.

@Jchina

I would query whether she could have Crohn’s disease, this can present with pain in the exact area of the appendix (right ileac fossa) and can come on quite suddenly and persist like this (obviously it’s a lifelong condition). Has this been mentioned at all *@Rabbitpoop*?

No one has mentioned Chrohns, no. It seems to be the options are either surgery or go home.

Just googled Crohns and she doesn't have any of the listed symptoms other than the stomach pain.

Good luck for the morning OP

Thank you for advocating for her.

Many still have the “doctor knows best” mindset and wouldn’t have. My mother included.

9 and a half hours later we're still waiting in A&E waiting room. Pretty fed up.

Did the eh have the decency to explain how you were told to go home when your child needs surgery ?

CAn you kick your medical Insurance In ? They don't normally cover emergency's but it still might be a quicker option.

Has ur DC had a calprotectin test? The markers on that should be pretty clear that there's something wrong

We're apparently booked in for surgery now so I'm reluctant to do anything different.

No they haven't explained anything at all.

I think some of the issue is that DD is very stoical and doesn't make a fuss so she doesn't look like she's in any pain. So she doesn't look like a classic case of appendicitis.

What I'd really like is just for a doctor to sit down and talk to us and explain what is going on. The last doctor we saw kept contradicting himself and talking over me e.g. saying it could be a urinary issue and when I said that her urine was tested and she has no urine symptoms he said "I know" in an annoyed way. So why did he suggest a urine issue then?

It's horrible to have no trust in the staff and yet have to trust them to look after my precious DD 😢

Tbh I wouldn’t be waiting for thme explain I would have been asking what happened.

@Peanutssuck

Has ur DC had a calprotectin test? The markers on that should be pretty clear that there's something wrong

Is that CRP? Yes she's had that and it was normal. Which is why they're reluctant to operate. Which I get. But then what else could it be and why is no one exploring any options other than surgery or go home?

If nothing else OP I’d be raising a complain afterwards.

@Roundeartheratchriatmas

Tbh I wouldn’t be waiting for thme explain I would have been asking what happened.

I did and they just said sorry and then wouldn't engage any more than that.

Wow. Would absolutely complaint you PALs when you get chance

@Rabbitpoop
Calprotectin test is a stool sample.
CRP is c-reative protein which is a blood test that measures for signs of infection and inflammation.

Did they say they couldn't see the appendix on the scan or that they couldn't see any appendicitis? They should be able to see the appendix and if they couldn't then they could repeat the scan.

I have so much sympathy for what you are going through - it is the entire feeling of lack of knowledge about the situation - you can't physically look yourself in her stomach to see what is going on and the people that you rely on knowing, don't seem to know.
You are the only advocate for your child and you have done a great job so far ! Keep lots of notes of what is going on and what you are being told. xx

They couldn't see the appendix. The sonographer told me this. The doctor just said the scan was normal. I questioned this saying that I was told they couldn't see the appendix and they said that if there was a problem with the appendix they would be able to see it.

We're now booked in for surgery (although I'll believe that when I see it) but I'm worried they haven't done the right rests or explored the other options. It just feels like no one is engaged in his care at all.

*tests
*her

I'm so exhausted and demoralised. Have barely eaten for 48hrs as I'm always waiting for someone to come so vant leave the room. And no food available at this time anyway.

I’m so sorry you’re both in this position.

Has she been admitted now ? Is there a 24 hour supermarket or petrol station anywhere near so that you can go there later ?

She's been admitted but we've just been left in the room for an hour. Still not had any food or water. I can't leave the hospital as I have to stay with her in her room.