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?

Tell them what the nice guidelines are, in relation to this, then ask them if they will do it.
My bil is a paed and he told me to do this when at hospital with my dc for something different because I wasn't happy with what they were saying and felt fobbed off. I asked him, he said they weren't right and they should be doing the test I wanted them to do and that it's in the nice guidelines.
If you tell them this, they will know you know what they should be doing, that you won't be fobbed off.
This did the trick for us! Good luck!

She’s really young but my niece had an ovarian cyst at 14, so it’s not unheard of. I think at the very least they should give your DD an ultrasound. Keep pushing for treatment, good luck.

Ask for another opinion or to speak to the first surgeon again.
If they couldn't see her appendix on the ultrasound then surely they can't say that it's all ok.

I think I'd be inclined to reiterate the NICE guidelines, firmly, or get an emergency appointment with the GP for another referral. Or go straight to A&E with her. You must be really worried and she must be feeling rotten.

There is just one more thing I might consider ... Is it possible your DD is having some kind of anxiety re. school or friendships, by any chance? Stomach pain and nausea without any obvious cause are a classic symptom of anxiety. And it's also very easy for a 13-year-old to Google 'symptoms of appendicitis' if there's some reason they're scared to go to school. I'm not in any way trying to disparage your DD here, but she's only a kid and sometimes when kids are really, really worried about something they will resort to quite desperate measures. It is just an idea though and frankly I'd feel as much sympathy for her if this were the case as I would if she has appendicitis, poor thing.

How do you know she doesn't have a constipation blockage?
Going to toilet does not rule out having constipation
Anxiety could also be a reason

I definitely think you need to push for ultrasound to rule out appendicitis and anything else abdominal. If nothing physiological is found could it be abdominal migraine?

Our friends dd was only diagnosed with her appendicitis by MRI scan, the ultrasound had missed it. They only managed to get the MRI because the dad is a Dr at that hospital and he pulled strings.

@Xpologog

I definitely think you need to push for ultrasound to rule out appendicitis and anything else abdominal. If nothing physiological is found could it be abdominal migraine?

She had an ultrasound

Thanks. It's not a blockage as her bowel movements are normal and the ultrasound also showed her bowel as normal. Bowel sounds also normal.

Ultrasound also checked gynae issues and all fine.

Pretty sure it's not anxiety. I did question her quite closely as she kept missing school but she loves school and is very laid back and chilled so I appreciate the thought but am sure it's not that.

I will have to quote NICE at them I think. So fed up of waiting.

I do have private health insurance. I'm wondering about seeing if the GP can refer me for an urgent private appointment to see a consultant. I'll have to wait and see what they say next and perhaps try that tomorrow.

I have private medical and when I have had private referrals in the past I could have done next day appointments half the time. Might be a better way. Then also the surgery is quicker and usually with better aftercare from my experience

No mention of a grumbling appendix?

I had this at her age. Had a giant ovarian cyst removed and woke from the surgery in the same pain as before. Eventually they took my appendix out with the warning, it's likely to be normal and a serious surgery that's unwarranted. (Open surgery, not keyhole back then).

They found that my appendix was over 15 inches long and had fused to my internal organs, hence why it didn't show in ultrasound. Retrocecal I think it was called. It took much longer to remove it and I got a decent apology from the surgical team and a request that it could be preserved for teaching methods.

I was left in pain for months and made to feel like a nuisance. To this day I always think doctors don't believe me.

Keep pushing.

The GP said grumbling appendix but hoped it would go on its own.

Interesting to say retrocecal as that is the type that matches his symptoms according to NICE guidelines.

I had this when I was early 20s - kept being dismissed and sent home in agony then my appendix burst and I almost died. NHS fobbed me off constantly - I would insist on an intervention.

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%!

Well, I had a massive (grapefruit-sized apparently) ovarian cyst that didn't show up in the ultrasound because it was too big apparently... so if she's still in pain, they need to find out why, even if to rule out things like cysts.

@Sickofthesoapbox24 said it far better than me. Have they mentioned mesenteric adontis - inflamed glands in tummy?

I would much rather wait and see than have my child operated on. Nurses and drs will be watching how your child moves about, how they sleep, checking pain scores and observations, how pain relief works etc to come up with a picture of how your child is and the treatment plan they follow.
Often it’s just one of those things and others the appendix decides it wants out a few weeks/months later. I’ve seen a few kids have surgery only for the appendix to be healthy, they attach the laparoscopic pics to notes with description of the procedure. Hope your daughter is on the mend very soon and back to normal

My dd had appendicitis aged 9. Her only symptoms were pain in the middle of her tummy, behind belly button, and a raging temperature that would not go down. She was very very lethargic, she just literally sat on the sofa for days, unable to do anything else. I had her to the GP 3 times in a week. All kept saying tummy bug. I knew it had to be more, as I’d never seen her this still, and we’ve never encountered a temperature that will not drop. Anyway, took her to the GP again as we were due to go on holiday the following day abroad. Again told tummy bug. We went home. Within minutes of being home she screamed in absolute agony - I KNEW her appendix had burst. Took her to hospital, bloods showed an infection but they didn’t know where. The following day they did a scan, half an hour later she was in theatre. Her appendix was burst, had an abscess and was infected. The surgeon later said, 3 more hours and she wouldn’t have been here.

If your dd has no temperature, and bloods don’t show infection, I’d be inclined to say it’s not appendix.

My son had suffered with severe tummy problems due to anxiety, causing physical symptoms to an extent that has genuinely shocked me. I now never underestimate what anxiety can do.

I hope you get to the bottom of things x

Maybe it's ovulation pain?

Pain at this age (possibly any age) is not normal. Keep pushing back OP. Does she suck her hair? My friend did at this age and had to get a hair ball removed.

Anxiety in the past has given me chest pain that needed to be managed with medication. It's a real and scary thing.

This happened to my daughter at the same age.
It was appendicitis
If that there is no sign of infection, it may not be appendicitis.
You are right, thought - there is no text for appendicitis - only surgery to see.
You could ask for keyhole surgery - they go through the bellybutton to look at the appendix.

I’d ask for a scan to rule out constipation.

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

He was going to operate before an ultrasound?? That's bonkers surely! You seem to be ok with him just looking at her and deciding that's what it was but not ok with the one who said it was constipation just by looking at her?

Has she started her periods yet? Could it be period related?

Ovulation pain? That can be really painful and one sided. Or mesenteric adenitis. They won’t just give your child an anaesthetic unless they feel it’s necessary.