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?

Thank you all. Yes the surgeon said it could have been very serious if they hadn't operated. I didn't fully understand but something about the fact that the appendix was hidden meant that by the time it showed up in bloods etc it would have already ruptured. I didn't quite follow but just so relieved that's it out now and we can focus on recovering. Very scary to think what might have happened if I'd gone home when I was told to 😔

Thank goodness! Good recovery to you both

I read this thread last night and meant to respond with a supportive message as it sounded like you were going through such a difficult and confusing time. I remembered today and I'm really glad that you stuck to your guns and trusted your intuition as a mother.

When I was having chemo for cancer as a teenager, I was hit with intense abdominal pain that resulted in me being rushed to A&E. I spent nearly 2 weeks in an isolation ward having blood transfusions and morphine. All the doctors would say to my Mum is that I had "constipation" - despite having the opposite issue. We never found out what it really was. It was a very frustrating time so I totally appreciate how it feels when you feel like no one is listening.

Wishing your daughter a speedy recovery

Best wishes to you and your daughter.

Looking forward to all the posters now who don’t RTFT and post along the lines of “well it’s not going to be the appendix because…”

I've been following this thread. And it just goes to show you should always trust your instincts doesn't it?

Im glad to hear your daughter has been operated on, I hope she is on the mend and makes a speedy recovery.

Thank goodness you advocated for your daughter so well. I hope she makes a quick recoveryx

Well done you - as well as looking after your daughter post op, make sure you take care of yourself.

Not sure from your post whether your DD had keyhole or open surgery, but do make sure you sit down with a senior person on the ward and ask them about post op care (I didn't know to do this). My DD had open and the post op side was v difficult - particularly with her bowels because of the surgery

Also, my DD had several re-admissions due to post op infections because of the state of her appendix. But DD is fully recovered now

Hope you feel v proud !

Thanks. They did an open one. So far they've just said she can have a shower in a couple of days and keep the dressing on for 7 days. I will ask if there's anything else I should do. I'm sure you're meant to gently massage and moisturise a wound once it's healed to help prevent scar tissue forming?

just home from work had to check this, so glad she's had the surgery OP and on the road to recovery! you were right and love to your daughter
(I think we need to recognize that instincts still have a place with science, I've been a health care professional alongside clinicians for 20 years this year and despite them all being Dr they all have instincts and don't discount those of our patients)

So glad to hear this op, and well done you for advocating for your child.
Wishing her a speedy recovery x

Wishing your daughter a swift recovery and that you get some good meals and sleep too soon!

I know it’s not probably top of mind right now but I would right down the sequence of events here and make a formal complaint to the hospital - so that they can make adjustments to their processes as needed. I know it’s unlikely they actually will, but still.

@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.

Oh my word, OP. Thank god you persisted. Wishing your DD a swift recovery.

• and I can imagine just how exhausted and worried you've been over the past few days, but you were right and so all of that time waiting and asking was justified.

If your DD is anything like mine she will really struggle to control her bowels because of the amount of gas that is in her stomach. I'd say at least 2d. My recommendation is to have plenty of panty liners, knickers under PJs and warn her in advance what might happen. If you are able to buy paper knickers (ones that you use after giving birth) highly recommended. Also a good few sets of PJ's. My DD was tied up to the IV and it was hard to get to the toilet in time.

My DD was discharged after 3 days - advice is that they should be kept in for 7d after open surgery to stay on IV antibiotics. That's part of the reason that my DD ended up with several readmissions with post op infections.

On discharge make sure that you get the ward direct phone number so that you can bypass A&E if you need to return.

Ask the hospital if they can print you off their guide to appendectomies - this will state what to watch out for (sickness / temp etc)

Do DM me if needed xxx

So pleased at the outcome for you all. Reminds me of our daughter when she was young. Best Wishes

So glad it has been sorted - well done you (and dd)

Thank you for updating, I already commented yesterday that it was appendix until proven otherwise so glad it turned out to be this and she didn't have an unnecessary procedure. I totally understood your frustration especially at the diagnosis of constipation! Hope your DD recovers quickly.

Blimey OP after all that messing about - just goes to show, you have to follow your instincts when it comes to your children. Thank goodness you stuck to your guns and didn't go home when they gave you the runaround. Wishing your daughter a speedy recovery. The hospital ought to give you a printout of information to go home with - ask the consultant when he comes round in the morning. Maybe you can get some sleep tonight!

[quote Sickofthesoapbox24]@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.[/quote]
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.

I'm a radiologist :)

@QS888

If your DD is anything like mine she will really struggle to control her bowels because of the amount of gas that is in her stomach. I'd say at least 2d. My recommendation is to have plenty of panty liners, knickers under PJs and warn her in advance what might happen. If you are able to buy paper knickers (ones that you use after giving birth) highly recommended. Also a good few sets of PJ's. My DD was tied up to the IV and it was hard to get to the toilet in time.

My DD was discharged after 3 days - advice is that they should be kept in for 7d after open surgery to stay on IV antibiotics. That's part of the reason that my DD ended up with several readmissions with post op infections.

On discharge make sure that you get the ward direct phone number so that you can bypass A&E if you need to return.

Ask the hospital if they can print you off their guide to appendectomies - this will state what to watch out for (sickness / temp etc)

Do DM me if needed xxx

On the opposite side to this experience..I had open surgery, had no problems with my bowels afterwards, was discharged 2 days post op without even antibiotics and recovered well. I did get some of that post op gas pain that some people get which at the time felt like a bloody heart attack but that was all.

@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.

Well done mama! How incredibly stressful for you both. Sending best wishes for your DD's recovery. 🌻🌻

It's a shame we have to fight with the nhs to get what we need, when they should be looking after us when we are in need. Reading this thread brought back memories about a lot of things we went through with my dad. Sadly he is dead, because of nhs incompetence. And his last weeks were worse than they needed to be, because of nhs incompetence.

Well done and wishing speedy recovery x

What a relief. Well done you and best wishes to your daughter for a speedy recovery xxx

OP, I’m a nurse. Do not massage or put oils etc on a wound.
She can shower as normal once home, wash herself etc, but don’t actively wash the wound. Pat dry with clean towel. Put new plaster on if you want, or leave exposed. Monitor the wound daily for signs of infection like, heat, redness, swelling, ooze. Take painkillers (even plain paracetamol) very regularly for first week. Soon be fit as a flea!

Oh my goodness! In your shoes, at the point when the nurse said you could take your dd home, I would have gone home, as I said in the thread. It's a very good thing that it was you not me making this decision - you were right! V glad that it is sorted, and all the best to your dd (and you)