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?

Fingers crossed that your DD has surgery today. Xx

Hi, I’m sorry you and your daughter are experiencing this. I’m a nurse and surgeons wife, I asked his opinion also and we are both in agreement that you should ask for a second opinion, this may not be appendicitis, however like you stated, it cannot be ruled out on diagnostic testing alone. If you are unsure what to say to any medical professional then contact pals or the ward matron and ask for an advocate. I feel ashamed at times to be part of the NHS when we have certain medical professionals lack empathy and understanding risking possible devastating effects. Please seek a second opinion, you and your daughter deserve more. If this happened in our trust, I would be whistleblowing my concerns. Ask how he reached the differential diagnosis and what he ruled out to come to that decision and diagnosis. Appendicitis is almost always considered the highest possibility if other causes are ruled out. I hope your daughter feels better soon x

It sounds an incredibly stressful week or so for you and your dd. I hope there is some progress for her today and she is out of pain very soon.

I think after all this is over, I would contact PALS and explain what has happened and the stress it has put you both under. It is unfair to put a child through all this, worrying whether they will be having an operation soon or not. I take it this would be her first op? I remember an a&e dr telling my dd she would need an op on her elbow and she burst into tears as it felt so huge and scary. I have found, unless you get a paediatric dr in a&e, they don't seem to know how to speak to kids.

Anyway, hope there is some movement today re an operation.

I hope it goes well today and you get to have some food while she's in surgery.

Best of luck with this, op. What a tough situation for you and your daughter. Really hope you get some answers soon.

Well done OP. I hope the surgery goes well.

Glad you've found a doctor who listens and has a plan. Wishing you both all the best, and hope that you're home soon and recovering.

Use your private insurance to get a second opinion.

@Rabbitpoop

I'm not pushing for surgery I just want a doctor to examine her and listen to her history and make an informed decision on what is best to do. Not decide its constipation without even physically examining her, then tell us she needs surgery, then leave us in a busy waiting room nil by mouth for 9 hours during which time we're told to go home twice by nurses, then admit her, tell me a doctor is going to come and talk to me so I wait up until midnight and no one comes, all of which time I can't leave my DD to get food or drinks, no rest and no sleep. I have been polite and patient with all staff but I am understandably frustrated, exhausted and stressed so was looking for some support here.

Thank you to those who have been compassionate.

The surgeon has at last come to see her. He said a CT scan is too risky for her age and that while the bloods dont indicate appendicitis, medicine isn't an exact science and the fact that she has a few indications of appendicitis (something called McBurneys point pain? And another test I can't remember where if they press on her left side it hurts on her right) means that it is sensible to take it out. They don't think there are any other tests or treatment options so it's either leave it or take it out. The surgeon says best to take it out as she's had same symptoms for so long and unlikely to get better if we leave it.

This is UK thing. In US patients would have CT (radiation risk likely less than diagnostic surgery risks). And in many cases, US or MRI can identify the appendix, and avoid CT (and surgery).

I know how you feel. My daughter has a condition in her brain which means it sends the wrong messages to her body, leaving her with constant tremors and very occasionally interpreting pain as a much more excruciating thing than the source would actually suggest. Such as throwing up and passing out with agony from a pulled muscle.

Anyway, she was admitted in agony, right sided low abdomen, temperature raging, blood full of markers showing infection, she couldn't even bear the ultrasound on her belly, she was being sick, and at least four consultants said she needed rest and calm and antibiotics because it was a "hidden uti" playing on her neurological condition. I was saying "no, no, she's really ill, do something!!" She had a drip in the end because she couldn't keep water down and she needed antibiotics. Nurses were ignoring her pain, telling her to calm down and forget the pain, as if neuropathic pain is something to be ignored anyway!! We actually had doctors disagree at her bedside (During lockdown) because she couldn't have keyhole surgery due to it being an aerosol generating procedure- two consultants were saying it's neuropathic pain and not worth the potential complications of open surgery and the surgical consultant was near on losing his mind at them saying "look at the bloods! Open surgery has to happen- better now than when it's ruptured. I'll do it, I'll do it. I'm doing it." Said "don't worry darling" to her, to me he said that my daughter had been done a disservice by doctors putting everything down to neurology and told us she would be in surgery within the hour and stormed out. It actually took three hours to take her down but yep, one appendix at imminent risk of rupture.

@thedancingbear
*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.*

IF I had listened to a gp when my son was young and NOT trusted my instinct that he was wrong, my son would probably not be here today!
I, thank god, got a second opinion and went from the first dr saying he didn’t even have a temp and was fine to a second gp saying he was extremely sick and sent us straight to hospital where he spent a week - it was the scariest time of our lives so I will ALWAYS advocate mothers/parents to trust their instinct!
And btw the hospital at the time ALSO told me I was right to trust my instinct!

Another one saying well done OP. Dd also wouldn’t be here if I had not stood my ground with doctors.

DD is now out of surgery and minus one very inflamed appendix. They don't know why it didn't show up in the bloods but the appendix was hiding behind the intestines which explains why they couldn't see it on the scan. Surgeon said it was a very good job we did the surgery.

So, ultimately, I can say IWNBU!

Thank you to those of you who gave helpful advice, compassion and support.

Well done for being such a good advocate for your daughters care and pushing on when you knew something wasn't right. Wishing your daughter a speedy recovery . Hope you feeling ok too it mus'tve been very stressful for you

So pleased to hear this. wishing her a speedy recovery

Great news OP. I hope she has a quick recovery. You shouldn't have had to fight so much to get things done. She would have ended up with a burst appendix. My daughter did and it's really unpleasant.

@Rabbitpoop

DD is now out of surgery and minus one very inflamed appendix. They don't know why it didn't show up in the bloods but the appendix was hiding behind the intestines which explains why they couldn't see it on the scan. Surgeon said it was a very good job we did the surgery.

So, ultimately, I can say IWNBU!

Thank you to those of you who gave helpful advice, compassion and support.

Thank you for coming back with this update.

Wishing your daughter a speedy recovery. And well done to you for your tenacity. I hope that you're able to get some well deserved rest.

I am so pleased for you and your daughter, Rabbitpoop! Now all she has to do is recover which, hopefully, won't take long and will be uneventful.

Thank goodness she has a vigilant mother like you.

@Rabbitpoop

DD is now out of surgery and minus one very inflamed appendix. They don't know why it didn't show up in the bloods but the appendix was hiding behind the intestines which explains why they couldn't see it on the scan. Surgeon said it was a very good job we did the surgery.

So, ultimately, I can say IWNBU!

Thank you to those of you who gave helpful advice, compassion and support.

So glad to see this update.

I hope that she and you can now get some rest.

It feels wrong to be happy about your last update as I’m so sorry your daughter did indeed turn out to have appendicitis, but also so happy that you were vindicated in the end! Well done for advocating for your daughter so well and I hope she makes a speedy recovery. I’m furious that you had to go through so much to get there in the end.

My relative once had complications from some surgery and I had to help advocate for a doctor to see her because something clearly wasn’t right, and I was repeatedly brushed off and told that she didn’t need to be seen. When she finally got seen it turned out that she had been put on the wrong antibiotics and it was in fact very important that she saw a doctor when she did. I’ll never forget the mix of fury and vindication I felt!

Jeez…what if ???
Well done you and I hope your dd makes a speedy recovery 💐

I hope your daughter is ok now and recovers well.
You did amazing advocating and fighting for her to receive the treatment she needed! Well done!

Well done OP on standing your ground. In a few days time when you have both had a chance to recover, if your feel up to it, please make a formal complaint to the hospital. If you re-read your posts on here it might help you to remember, and put everything into the correct order and context of what happened. I just want you to do this if you are up to it, to try and stop such a massive internal communication breach happening again.

But most of all I came back to say that I am so happy and relieved for you and your DD, that you persevered, and that you got exactly the right result in the end. Of course you and your poor DD should never have had to go through the ordeal of that long day in A&E, instead your DD should have been having the operation that you had both prepared for. 💐💐

So glad the inflamed appendix has been taken out and so sorry your dd and you have had this experience @Rabbitpoop. So glad you advocated for your dd 💪🏻.

Well done for making sure your DD got the treatment she needed! Hope she makes a good recovery!