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.

@Elieza her normal pattern for bowels has always been roughly every two days, as it had never caused her any discomfort I took this as just normal for her but now I am blaming myself that maybe I should have got treatment for it as maybe it has now caused a problem? She went 4 days without from when this first started and then twice more two days later and again two days later. It was soft and normal when she went. I ah e been continuing to give her movicol and will carry on, thank you

@Hadenough21 she does have milk before bed every night so it could be this, although she has milk in the morning every day at school which doesn’t seem to be a problem but I will try lactose free milk just in case, thank you

@TableFlowerss thank you, I appreciate your kind words

@lightacandle
thank you, I asked about that and obstruction and they said it couldn’t be as no fever or vomiting and she is eating (although less than usual) and passing wind and pooing, but I will ask about it again

In fact (if I can be allowed to just find a tiny bit of humour in something as I’m worrying myself to death) I know her bowel is at least somewhat clear as she went to a dance club thing today and when I picked her up and asked her if she’d enjoyed it she said “yes! It was great! I did lots of farts!”

Google mesenteric adenitis.

It ia evil and my son had it so severely they mistakenly removed his appendix.

Also second checking re appendix.

Ask her to jump up and down. If it hurts, go to a and e.

I'd be pushing to get her tested for Crohn's and coeliac, they both cause horrible stomach cramps. Goat's milk has a stronger taste than cow's milk but it's much gentler on the stomach so that might be worth trying too. I hope you get to the bottom of it, GPs can be so dismissive

If she starts rolling in pain again, I'd go to A&E if I were you.
There's something not right of ot keeps recur

If it keeps recurring

Lactose free milk won't help if she has a milk allergy op. It's generally the proteins that cause the issues not the sugars. Lactose intolerance is fairly rare. Milk protein allergy is far more common. Vegan 'milks' are what you need. However given what you have said I doubt it is that.

No. Functional abdominal cannot be diagnosed until other causes have been excluded by investigation.
She needs to see a Paediatrician. Call your GP tomorrow and ask for a Paeds referral. They did ask you to monitor, which you've done, and there's no chance, so time for tests.
Better if you have private health insurance.

I was also going to suggest worms, esp as the pain seems isolated to nights only. Worth going into check on her in the dark with a torch and seeing if you can catch any worms by surprise, either around her bottom or vulva/inside vagina.

Sorry to hear about your daughter. I was going to say is it worms too after sitting up for a couple of weeks with my daughter. She was in so much discomfort, we have her ovex, had to treat us all, but within 3 night she was right as rain and as grim as it was there were worms in her poo.

Definitely take her back op for another check.

However I'd echo what someone else said, if it's constipation (which is very likely), movicol needs to be used for several weeks ime and the dose gradually upped, every day, until symptoms stop.

Just to give you a bit of reassurance, I've been through very similar with Ds1 when he was 4. He was always fit and healthy and very much a 'brush it off' kid when hurt or ill, never made a big deal of anything.

Then out of the blue one day he developed horrendous stomach pains over the course of a couple of hours. He was hysterical - clutching his stomach, doubled over, screaming in agony, then violently vomiting. Then he seemed to have almost a funny turn...not a fit or a faint but he had the oddest spaced out look in his eyes in between screams of pain, like he wasn't quite all there, not very responsive and odd jerky movements.

The first time it happened I called 999. I was terrified, I honestly thought he was dying, it was so horrific and so sudden. We were blue lighted in, him vomiting and screaming the whole way, and they gave him morphine in A&E which stopped the pain and brought him round a bit.

Then a battery of tests for appendicitis, an abdominal scan, blood tests, urine tests...all clear. Sent home the next day with movicol for constipation. They said the 'funny turn' he'd had was likely shock as his body struggled to cope with the pain.

The same happened three more times over the next few weeks, and we took him straight to A&E each time. Nothing diagnosed, all tests always clear, movicol upped each time. He was having regular bowel movements but apparently it can still be constipation even so if they're not completely emptying their bowels. Every time it happened he had a shock reaction and a shot of morphine at A&E the pain was so bad.

Then it just stopped. I was on pins for weeks waiting for it to happen again and it didn't. He's now 13, no digestive or bowel issues at all. It really was 'just' constipation. It's hard to believe it can cause so much pain and such a horrific experience.

Not sure if that's helpful, probably not on a practical level for your poor dd at the moment. But hope it's maybe reassuring that it can be 'just' constipation and not necessarily anything awful wrong x

Bless her, that sounds awful. I wonder why she's finding comfort in cold things - floor, fan etc. Could it be a burning sensation she's feeling?
I would be taking her back to A&E! Nightly if needed, especially if she seems like she is very distressed with the pain. Fingers crossed for you both!

You’ve pretty much described exactly what happened with my 6 year a few years ago. He would wake up in the night in agony, extremely distraught and screaming in pain. He was going to the toilet regularly and happily doing all his normal activities during the day despite complaining about a tummy ache every now and then. The GP suggested reflux medication and some other over the counter medication which, it actually turns out, cancelled each out so were totally pointless. It all culminated in me driving him to A&E at 2am one night as he was screaming blue murder and writhing about….then turning around halfway there as the act of simply sitting up for ten mins in the car seat had resolved all his pain. I was terrified we were dealing with appendicitis or worse.

I pushed the GP for a referral and we saw a paediatrician privately who diagnosed constipation and put him on Movicol. He advised taking the highest dose over the weekend to clear him out so to speak and then lowering the dose over the following 2 weeks. I have to admit I was pretty sceptical but it did the trick and we haven’t had any problems since apart from a very grumpy boy who hates being told to sit on the toilet every night before bed 🙄.

All that to say do push for a referral, it sounds like your GP has done a lot already so speaking to a specialist would be the logical next step. Good luck!

My son's appendix pain was around the belly button for two days then only slightly moved - was inflamed & would have burst if not taken out. Please go back to A&E-

Another one to say, you are not over reacting. I work in the nhs and we always trust a mother that tells us their child is not right. My daughter had similar pains. Each day is another 24hrs, a long time to suffer when you are little. You are right to be the voice for your daughter.

OP, don't listen to the comment, if the belly is soft it can't be appendicitis. It absolutely CAN!

I had severe stomach pain on and off for 9 months, including a visit to A & E. My stomach was soft the whole time. One night it was so bad i I was vomiting a yellow fluid and called an ambulance. The paramedic suspected appendicitis straight away.

I was operated on the following morning. It was acute appendicitis. My stomach was full of infected influid. The Consultant told me if my appendix had burst I wouldn't have made it, that was how bad it had deteriorated. He said my appendix was in a very bad state.

I'm not saying that's what your dd has but it does sound VERY similar to me. The pain came and went but when it came it was agony.

Please get her checked out for twisted or perforated bowel. I'm not sure which. I remember a local case of a young lad.

Take her to A and E!

When my son was 14 he ran the fastest 100m in his year on Monday. Wednesday he went to school as usual, early afternoon the school called and asked me to collect him as he had a stomach ache.

Thursday morning he was a little better but it got worse again in the evening, Friday morning not too bad but by Friday evening he was in a lot of pain. I called the OOH doctor and they told me to bring him to the OOH GP surgery. My daughter had a friend staying and so my husband took him, came back , doctor said it was a pulled muscle. I knew it wasn't as he had a temperature. He was up all night crying in pain.

So Saturday morning I called the OOH doctor and insisted on a second opinion, they reluctantly told me to take him back. The OOH GP was at our local hospital, the doctor didn't think it was anything serious but I was adamant that there was something wrong so he referred him to a and e. The doctor there was amazing. He did blood tests and found there was a severe infection, the pain was in the wrong place for appendicitis so he ordered a scan to see if he had a retrocaecal appendix.

He didn't, but the scanning technician found a liver abscess. That doctor and that technician saved his life.

Please take your daughter to A and E.

With appendicitis you normally have a temperature and guarding of the abdomen, it is common for the pain to left and radiate over to the right. The pain would be getting worse.

Please get her checked out for twisted or perforated bowel. I'm not sure which. I remember a local case of a young lad.

From what the OP describes, unless I have it wrong, she is fine during the day and has even been going off dancing etc with no issues. It’s just of a night. How happily do you think people with twisted or perforated bowels get along of a day?

ED doc here.

If it were my DD, I would not be accepting of the assessment so far and next time it happened I would be going straight to ED and kindly advising that I require a paeds opinion before I leave the hospital. The threshold to refer to peads in ED should be low and I would be shocked if they refuse. If they refuse escalate and ask to speak to matron and/or consultant. It's no skin of ED docs nose to refer to paeds and a good paed reg will basically always accept referrals.

Also agree re trying worming tablets- unlikely to do harm but wouldn't it be fab if it's something as simple as that! And the video advice is also good.

I can't explain why but my step child's symptoms of bacterial gastroenteritis were so much worse at night. They were admitted for it.

Yes go back to the GP I think it’s quite likely they will get you seen by paediatrics at this point but if they don’t suggest it then ask. Always follow your instinct and get them seen.

I’ve just woken up and read all your replies, thank you, I sent a message in the night to the surgery via the ask my GP email form (it’s how we have to contact them) asking more questions and asking for an urgent referral to paediatrics, I’m not sure if it’s better to wait for them to do that when they open at 8:30 (would we then go straight to hospital to see them?) or go to A&E and they refer us to them? DD slept all night and is awake now saying the pain is a bit better, but I expect it will happen again tonight. Going to get some ovex as soon as the pharmacy opens as well