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Original poster

Anyone up who knows what this could be? DS in pain.

753 replies

daydreaming3 · 23/09/2023 06:09

DS (4) was fine all day yesterday. We went out for dinner last night and he ate all of his (including beans which may be relevant). We then had our weekly family movie night, DS had some squash and a tiny bit of chocolate whilst watching the movie. Normally on movie night we let the DC stay up later than normal so they usually sleep in aswell.

He's now woken up at 4 this morning crying saying his stomach hurts. I instantly thought its because he ate so much last night so encouraged him to go to the toilet which he did. He did a poop but said his stomach was still hurting.

He's now white as a ghost, feels really cold and clammy to the touch and is saying his tummy hurts so much he can't stand up. I've got him to walk a little bit which he has but he's bent over whilst doing it bless him.

I don't want to take him anywhere yet incase it is just wind from the beans Blush but I would have thought going to the toilet would have helped ease that a bit which it hasn't. Anyone had this with their little ones?

OP posts:
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Sapphire387 · 23/09/2023 20:41

I have nothing helpful to add from a medical point of view, but OP, there are lots of us here thinking of you and your DS and wishing him better. Please keep us updated and use us as a sounding board if need be. So many helpful people on this thread so far.

C152 · 23/09/2023 20:42

You must be so worried, OP. Stay at the hospital and please keep asking for a second opionion. It will be hard now, as if the hospital you're in is like most, there will be nothing but a skeleton crew on over the weekend and no experts on at night. Hang in there. I hope you DC gets a diagnosis and improves quickly. x

Muchtoomuchtodo · 23/09/2023 20:43

@daydreaming3 you are doing a great job and the fact they you and your son are still on a ward is all your doing.

keep stating the facts about how he is and why you’re not going to take him home. Ask for a second opinion if you’re not content with the current team.

hopefully you can both get a bit of rest tonight xx

justasking111 · 23/09/2023 20:50

I knew a boy same age as this similar symptoms. He was transferred to Alderhey they discovered that it was his gall bladder. The chances of a four year old having this they said was very rare.

TawnyLarue · 23/09/2023 20:51

You’re doing great. Do NOT be fobbed off.

MyCarHasBrokenDownAgain · 23/09/2023 20:55

Youthinkyoureuniqueyourejustastatistic · 23/09/2023 20:33

Sorry I haven’t read all the posts but I’m assuming they’ve tested for something like PIMS-TS which is an immune/inflammatory condition that can happen about 6 weeks after a covid infection.

Symptoms are painful stomach, red/chapped lips, d&v, headaches, irritability, tiredness and weakness https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/paediatric-inflammatory-multisystem-syndrome-pims/#:~:text=Paediatric%20Inflammatory%20Multisystem%20Syndrome%20(PIMS)%20is%20a%20new%20condition%20that,off%20infection%2C%20injury%20and%20disease.

another similar condition is Kawasaki disease.

Hopefully they have ruled this out already but it doesn’t hurt to ask.
You could also ask “could this be sepsis?” (I am definitely not saying that it is BUT it could trigger a different thought in a Dr who might just be thinking D&V bug 😬).

Hope he’s home well soon xxx

I was wondering about this, my son was older but showed very similar symptoms to yours. They were going for his appendix before someone at the hospital checked with the Evelina in London (the experts in PIMS), he was then blue lighted up that there that night. Its pretty rare and not all that well known about. Hope all goes well and he's sorted soon.

Needapadlockonmyfridge · 23/09/2023 21:04

I hope you can get answers soon xx

Daisymae55 · 23/09/2023 21:06

I don’t have anything helpful to add but you’re being such a wonderful mum, keep standing up for your son and do not let them fob you off! I hope you get answers soon and that your little boy gets better soon. Stay strong and keep fighting for answers 💕

SpideyWoman1 · 23/09/2023 21:10

Has he improved at all OP?

StopProcrastinatingGerald · 23/09/2023 21:12

I hope your ds is feeling better soon

Bloomingmagnolia · 23/09/2023 21:13

Wishing your DS all the best. This reminded me of Martha’s story. Her mother is a true warrior and has been in the press again recently advocating for Martha’s Law (the right to demand a second opinion). I’m sure you’ll continue to ask for reassurance or explanations from the medical team until you are satisfied it is safe for him to go home. One of the failing’s in Martha’s case was a lack of continuity of care and communication. Make sure the docs are fully aware of the history and test results. Please keep an eye out for any symptoms of sepsis (seems unlikely from what you’ve said). Much strength to you and your child.

AntiStars · 23/09/2023 21:14

If they do insist on discharging you and that all the tests they’ve done are normal, just a thought but could you travel to the other presumably bigger hospital that was mentioned when they initially thought surgery might be needed? They must have an A&E there and you could just turn up there and say that he got worse in the car on the way home from the 1st hospital but you didn’t see much point in taking him back there so would like a 2nd opinion. He’s a child in obvious pain so they are not going to send him away.

FlutteryButterfly · 23/09/2023 21:15

This reply has been deleted

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whatausername · 23/09/2023 21:16

You are right that he needs to be in hospital and should not be discharged. Push, push hard if you have to. Keep up sharing your concerns with the nurses, they will fight your corner. Your son is also entitled to a second opinion. Push push push.

FlutteryButterfly · 23/09/2023 21:17

This reply has been deleted

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Sorry wrong thread, hadn't even opened this one so no idea why posted here

HighlandCowbag · 23/09/2023 21:19

Gosh OP how terrifying. If they discharge you definitely drive to the bigger children's hospital and say he has got worse and you are worried re sepsis or something. Poor little mite.

Slipslidinginthefray · 23/09/2023 21:21

Really hope there has been some improvement in how he feels and some answers for you all OP.

everythingthelighttouches · 23/09/2023 21:22

Gosh I’m so sorry OP.

You’re doing a great job.
listen to your instincts.

You can refuse to be discharged.
You can ask for a second opinion.(although I’m not sure by law they have to give it to you yet, but the law is changing)

I’ve been in a similar situation and it is extremely distressing and difficult, when you are feeling so low and emotional to have to have this conflict with a bunch of professionals on their turf.

If you can get another family member or close friend to come in to support you in this, please do, it helps your resolve.

Sending hugs to you and wishing much strength.

Nomad916 · 23/09/2023 21:27

Appendicitis can start with pain around belly button. Sounds very much like that.

outerlope · 23/09/2023 21:27

I don't have the knowledge or say anything useful but OP I am so sorry that you are in this position. It must be terrifying and you are doing so well. My feeling is that I also would try to push very hard not to be discharged - he very clearly isn't right. Then not knowing what's wrong is not the same as nothing being wrong. He should be in hospital until either they figure it out or he gets better. If they do force you to leave please go straight to the other hospital. You can not have him at home like that.

Theredtoyphone · 23/09/2023 21:29

So sorry to hear about your DS, I hope he’s better soon. Well done on standing your ground.

everythingthelighttouches · 23/09/2023 21:32

Just adding this OP:

”Your child should not be discharged from hospital unless:

  • They are medically fit for discharge as determined by the clinical team.
  • An assessment has taken place to determine the level of support they may need to discharge them safely and to establish if your child qualifies for NHS continuing care.
  • You have been given a written care plan which sets out the support they will receive to meet their assessed needs and this support has been put in place.
  • There is a system for monitoring and if necessary adjusting the care plan to meet any change in needs.”

It’s from a law firm webpage.

I can’t vouch for it’s accuracy but it makes sense to me.

I can’t see how he could be deemed medically fit for discharge if he can’t walk.

How would they expect to get home home??

link

https://www.moorebarlow.com/guides/hospital-discharge-for-children/

Hospital discharge for children - Moore Barlow LLP

When your child leaves hospital it is imperative that arrangements are in place to ensure that he or she is medically fit for discharge and you have adequate support. This factsheet explains what to expect when your child is discharged from hospital, t...

https://www.moorebarlow.com/guides/hospital-discharge-for-children/

Boopeedoop · 23/09/2023 21:34

If they try and discharge, refuse. Tell them it's an unsafe discharge and you will complain to the trust.

Tell them you want an urgent CT to rule out internal bleeding.

Ask for a transfer to a larger hospital that is more suited to his needs.

I hope you are ok.

ChristmasCwtch · 23/09/2023 21:37

You poor love. The medical system in the UK is such a pile of shit. Hoping you get someone to actually help your little one 🙏

ilikefastcars · 23/09/2023 21:37

How is he doing now daydreaming3 ?