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.

Dd had similar when about 3 complete with writhing pain in stomach my mum was looking after her that day and is usually a downplayer but she took her straight to a and e. They considered taking out her appendix but it was mesenteric gasterotentis in the end and just went.

Op I had similar symptoms as a child for around 5-6 months which eventually escalated one day accompanied by vomiting and slight fever, and turned out to be appendicitis. I was seen by various consultants including a gynae and a gastro - they generally concurred it was "growing pains" and fobbed me off. My Mum knew it was more than that and kept pushing. She was fobbed off by a gp who did a house call as I couldn't walk (this was in the 80s when they still did them....) and said it was most likely food poisoning and gave me a sedative. Next morning my Mum insisted our usual gp do a thorough exam with blood tests which is where the appendicitis finally showed up (wasn't obvious on palpation). They said it was in slightly the wrong place and so had been missed for months. You know your DD best and if you think this isn't normal for her keep pushing for answers. Good luck and hope she's better very soon.

Good luck! I would also advice filming it and writing a diary with symptoms and date and time. And if medication changed anything or not...

I found this:
gi.org/topics/functional-abdominal-pain-in-children/

I also read that appendicitis can present as pain around the umbilicus, it later settles to lower right abdomen.

Osteomyelitis is an infection in bone, usually long bones, so it is unlikely to be that.

I hope she is better today op, it's so tough when your children are in pain.

I wouldn't necessarily rule out appendicitis either.

When my DS2 was 4, he had a week of odd pains in the centre of his belly and his back, plus a few other symptoms - took him to the GP the Wednesday after he'd thrown up just once each night for 3 nights and then settled and been fine after. GP said to monitor it. I did, it kept happening but I couldn't get in again til the Monday. Took him back to GP (different one) on the Monday - he poked and prodded and asked about constipation, checked the McBurney's point for appendicitis, nope. "Just one of those things".

Next day, DS2 suddenly felt like he was about to throw up, didn't, then asked for toast. Weird - plus he still had belly pain and a sore bit in his back. I ended up taking him to A&E, where they decided to do an ultrasound to see what was going on - his appendix was ready to burst. He had what is called a "retro-caecal appendix", which means it lies behind the caecum, so the pain isn't in the "normal" place for appendicitis. He had it removed before it burst, but it was apparently black with gangrene at that point .

When he was discharged with a letter for the GP, the GP actually (and extremely rarely!) phoned to see how he was and to apologise for missing it - I didn't blame him because he did the right tests, but the appendix wasn't playing the game properly, and luckily for us all, my gut instinct kicked in (plus I'd only had appendicitis myself the year before - my appendix wasn't in the "normal" place either - they had to do an ultrasound to see if it was my appendix, my gallbladder or an ovarian cyst!). DS2 fine.

So, in my opinion, if you can get one, I'd push for an ultrasound.

Unfortunately the NHS move so slowly and its only gotten worse with covid. You need to keep going back until they move.

Make a video and ask them when showing them if this really looks like nothing is wrong.

Another vote for potential twisted bowel here - I had this, it’s a birth defect that normally is picked up in babies but sometimes the bowel isn’t twisted enough to completely stop babies eating and in those cases (like me) they get older and then the bowel can twist intermittently, causing temporary bowel obstructions which are agonisingly painful, then untwist again giving relief. I had a simple surgery to untwist mine after 9 months of intermittent pain which left me in agony and doctors claiming there was no obvious cause, bouncing me from specialist to specialist. It was a high contrast CT scan that diagnosed me.

Thank you all, I have noted everything you have suggested

If I had listened to my GP I would be in a wheelchair now. Her partner tried to back up her diagnosis. I knew they were both wrong and persued a diagnosis for myself luckily.

People think GPs are god. They are so not.

I see someone else has suggested Mesenteric Adenitis. I was pulling my hair out when DS had this, we were to and from the doctor and hospital until diagnosed, sorted with an antispasmodic drug lot relax the abdominal muscles which helped a lot. (Basically it’s swollen glands in the stomach)

Thing is it could be functional abdominal pain but until they've done all the tests how on earth can they know!

This surely warrants bloods and an abdominal uss if nothing else.

Just go back, calmly state your dd has ongoing abdominal pain and you want further tests. Good luck. Sadly you do need to be pushy with some GPs.

Abdominal pain is a nightmare as there can be so many causes and it is so difficult to diagnose. She could have something like Crohns which often takes a very long time to pick up and diagnose. It's not normal to be in that much pain over a long period so she definitely needs to keep going in if it keeps happening.

Just keep going back and keep pushing, see different doctors if they fob you off. Unfortunately as PP have said if you don't go back they will assume it's OK now. Well actually they won't assume anything as they see so many patients you just won't be a consideration if you're not there.

@Lampadusa

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

Please do not go to A&E. It's not an emergency. A&E is clogged up enough already without people using it inappropriately. Just push your GP for the appropriate referrals/ tests.

Can you see another GP at the practice? You need to push this OP. You are her mum you you know something isn’t right. Personally I would feel inclined to take her to A&E when she has an episode if you can’t get anywhere with the GP. Handhold OP, you must be really worried . Good luck I hope your DD is feeling much better soon.

Could it be trapped wind due to a food intolerance? That would fit the pattern of pain at night, as lying flat and not moving prevents the wind escaping. I'd ask her whether it feels a bit better after she farts.

Sorry OP, your poor DD, you must feel helpless too. I’d film her next time, and keep a diary, as you are doing. Definitely go back to the doctors.

Has she had bloods taken?

We are going through something similar in a way. Our DD (6) has been sick on and off for a month, just at night. We’ve had full bloods taken, which luckily came back clear. And our DD seems to have forgotten her routine of feeling sick at night. She was sick once at 3am, and since then, has worried about it happening again. We only had to mention bed, and she’d become nauseous. Such a worry, but finally we’ve turned a corner.

Did your DD have an upset stomach at all?

I hope she feels better soon, and you get answers. You can’t carry on like this, definitely back to the doctors. Best wishes xx

@onelittlefrog

Ignore this poster

They can't possibly know what's wrong with your daughter to determine it not an emergency. She's in pain that's not improving, AE is entirely appropriate for this. I've taken my son for less

The AE being clogged up/ wasting their time drivel is not the fault of people turning up without a need. It's decades of underfunding and poor management of services.

Worms come out at night, I'd definitely consider Ovex (on top of chasing the doctors today)

Try the liquid form but check with GP first. They only bother at night time and they drove my 5 year old demented with tummy pain. I was able to see them when he was asleep with a torch. I will say no more.

Sounds obvious....but could you write out your observations and add more detail and ask to speak to somebody face to face?
That's reasonable?

@Lampadusa

Should I ask for a paediatrics referral? I’m worried (on top of everything else) that they just think I’m over anxious now because she’s pretty much fine whenever they see her in the day

I'd take her to a&e at night when it's bad

Hi OP, I just wanted to share our experiences with DD as I remember the panic when the exact same thing happened when she was 3. It was awful and I completely understand your frustration when they are so poorly in the middle of the night but then fine during the day. It would be like she was in the most intense pain then it would just disappear. I too felt like the drs thought I was making it up or overreacting, which made it even more distressing. We had gone down the GP route but not got very far. After a couple of months DD ended up in hospital with an unrelated issue but as she was admitted and in hospital for a week they saw how distressed she was getting firsthand and decided to investigate. Before she left the hospital she had full bloods, ultrasound and an MRI, then over the course of the following year regular appointments with the consultant along with repeat ultrasounds and bloods. They found nothing wrong. Abdominal migraines, immature gut and possible strep infection were all suggested but during the year DD woke and complained of the pain less so they decided to continue to monitor her. After around 18 months she just seemed to grow out of whatever it was thank goodness.
I think you 100% should push for further tests as these things definitely need investigating but I just wanted to try and reassure you that it’s not always as awful as the things our brains imagine in the middle of the night. Hope your little one feels better soon.

I would keep pushing the medics op as she is in so much pain. I know how worried you must be and how frustrating it can be working with the doctors when they have no diagnosis. My DS developed stomach ache when he was 10; doubled over unable to stand up. We made repeated trips to GP and he had a lot of bloods taken, presumably to measure inflammation and check for appendicitis. He missed loads of school as he wasn't functioning when it was at its worst. Nothing found and a referral to paediatric consultant gave us a diagnosis of functional abdominal pain. Treatment is to ignore and carry on. We took this advice and he is much better but at the time it was very concerning and I really struggled as I so wanted to get him relief and his life back to normal. Good luck and I hope your DD is much more comfortable soon. My DS's pain was during day and night and not as acute as what you describe. But pain is such a variable thing! Really hope you get some insight.

@onelittlefrog sorry I think you’re dead wrong here. GPs make mistakes, it’s completely acceptable little kids in real difficulty to be taken to A&E.

Take her to A n E. My son used to complain of tummy aches like your daughter and eventually it was diagnosed as a kidney problem. Children can’t always identify the source of pain.