To go back to GP when essentially they’ve told me there’s nothing they can do

[Lampadusa]

Sorry if this is long. My five year old DD has always been very healthy and apart from the usual colds and coughs has never really been ill. 8 days ago she came home from school saying she had a tummy ache. By bedtime she was crying and rolling around with it so I called 111 for advice and a few hours later a clinician called back. He felt it was probably constipation and gave advice, and said if it was still bad in the morning to see the GP. She had a bowel movement that night.

I took her in and the GP took a urine sample, she didn’t really discuss any other possible cause for the pain but just said to wait for the test result and we’d see then.

Daytime wasn’t too bad, didn’t complain of pain as much

We had another night of crying in pain, I spoke to the surgery again and she was seen again. Urine result had come back clear. They said they couldn’t see anything obvious so just monitor her. Better in the day time again.

Fourth night of crying in pain, doubled up, wanting cold things on her tummy, wanting to lie on cold kitchen floor tiles, standing in front of the fan. Eventually went back to sleep, better again in the day

Fifth night crying and screaming in pain, inconsolable, we drove to A&E. ED doctor dipped urine, found leukocytes and blood (despite clear lab test that the surgery took) and prescribed 3 day course of trimethoprim for UTI and movicol sachets. Better again in day, opened bowels. Hopeful at this point that this and antibiotics would make the difference.

Night 6, slightly better, woke up with tummy ache but quickly went back to sleep. Pretty good in day.

Night 7 bad night again, crying in pain, rolling around, wanting cold on her tummy again. Called GP again in day, went in again, doctor basically said there’s nothing wrong, it’s just functional bowel pain, quite common, not much you can do. Keep taking movicol, bowels open.

Night 8 awake for two hours with pain

Night 9 (tonight) she has just woken up again rolling around crying saying it hurts, it hurts.

What can I do? Is there anything else I should be asking for? Any tests? If there’s nothing else that can be done then is this just life for her now? Disturbed sleep and pain every night and no sleep for us either? Because she’s a lot better in the day I’m not sure that the doctors understand how bad it is when it’s bad. I just don’t know what to do at this point.

As a couple of posters have mentioned, my DD also had mesenteric adonitis a few times and it was really painful. I hope they find something to ease her pain soon OP, can't be easy to see her like that.

I’m sorry your daughter is going through this, it sounds so similar to what my daughter went through did 3 years when she was younger (she was under hospital care too, regularly seeing doctors who just prescribed more and more movicol).

Eventually we paid for a private food intolerance test and cut out wheat and seasame and within 2 weeks she was like a different child!

Please look into paying for a test, the doctor at hospital couldn’t believe the difference In her when she had her routine appointment (just a month after cutting out the intolerance food) but in his notes he said he’s not allowed to write that we sorted it so it’s gone on file that it cleared up on its own

@Lampadusa

Thank you all, I have noted everything you have suggested

You’re absolutely right to pursue this. I hope your Dd is okay. 🌻

Have they checked for things like coeliac? My daughters got missed for ages as she had constipation and not diarrhoea. Good luck, hope you get some answers, it's awful when they're ill. Trust your instinct if you think something isn't right.

Hi my sons appendicitis manifested initally as pain around the belly button, it didnt move to side until very late on and resulted in emergency surgery.
He was first diagnosed with constipation by a GP.
I took them to A and E as not happy, blood tests and a scan diagnosed the issue.
Reading up on it later and talking with friends the pain around the belly button is a classic symptom in children.
I read a piece recently where doctors were being told to trust parents instincts more.
But fingers crossed it isnt anythong serious.

Does she have milk at night?

Sounds like she might be allergic to something she eats or drinks.

My cousin had bad stomach aches on and off, turned out to be food intolerence. Keep pushing with the doctors but perhaps also look at the FODMAP information and limit her diet just for a short time to well tolerated foods to see if it makes a difference. The fact that her condition improves when she poos also makes me think it could be this.

Had this with dd age 2, screaming in pain and rubbing her thighs as well. Straight to A&E. Seen quickly and Dr said everything was normal. He said are you giving her calpol 4 x day? I said I wasn't, he said in a shocked voice "your child is in terrible pain and you're aren't giving pain relief?" I felt awful. I had given it, but just not regularly. He told me to give it 4 x a day for at least the next 2 days.

Take her to a&e in the night so they can see the pain.

Ds had this it turned out it was a reoccurrence of his acid reflux from when he was a baby

We are at the hospital, came in via ED and now waiting for a paediatric doctor, thank you for suggesting some of the questions I will ask them

So pleased to see you are waiting for a review by paeds. There are many things it might be, hope you get a good plan of action.

It's very unusual for all the normal reasons for tummy pain to occur only at bedtime. Are there any emotional issues, anxiety etc that may be the cause? Even constipation doesn't just occur at night.

They will probably look at abdominal migraine, but there is also a condition where the glands are painful, but strange it's only at night.

As it’s worse at nighttime maybe its worms? That was my first thought.

Is she having very cold drinks or ice lollies. These can cause pain.

Op, I really hope you manage to get some answers. for you and dad, horrible to see them in pain.
We had similar with DD 2 years ago and we were fobbed off time and time again. We were in the children's ward 17 times in less than a year. DD is 15 so a good but older than your DD but I totally get your frustration. Turns out dd's issues are gynae related (suspected endometriosis) but that was after we went private to a gynae consultant.
Don't let them fob you off as you know your DD best.

Oops DD not dad, stupid autocorrect

Best option - but trying NOT to be confrontational - is to ask your GP for a Second Opinion, within their practice. Just a fresh pair of hands/eyes without any preconceptions might produce a diagnosis.
The problem with abdominal pain is the nearly infinite number of differential diagnoses..
[Treatment is usually easy. Diagnosis is the difficult bit.]

Very similar history with my boy age 12. I am a health care professional so kept pushing in end saw gastroenterology who after 6 months of tweaking mess resolved issue - takes medication long term. Doctors view seemed to be not serious which it isn't but still life changing. We d be up till 1am and began missing school. So trying to run my own clinics was a challenge. I wasn't fobbed off but it seemed like so many hoops to go through first. Functional just means no known case. Its a rubbish and frustrating diagnosis

Oh and my boys was consistently at night. It is common due to digestive system shutting down hence babies and colic. Infacol was a surprising suggestion which wasn't right for us but gastro team said lots of success recently in older children and adults so worth a go whilst you are waiting

I really hope you can get it sorted!!

I’m not sure if it’s been mentioned but my DD gets anxiety and it comes out a physical pain in her stomach and makes her physically vomit and have diarrhoea. It’s a vicious cycle as she has anxiety about getting anxiety and the pain and sickness that comes with it.
It probably isn’t but just something to keep in mind especially if it’s happening at the same event everyday.

I really hope they get to the bottom of it xx

I'm so glad you're at the hospital and hope you have a good result.

Well done for persevering OP, I hope you get sorted.