Never ending tummy pain in ds - someone tell me he's not making up

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This has been going on a year.

Worse at night and in morning.

Had blood tests to rule of coeliac.

Showed slightly raised eosophiles.

Has dust mite allergy.

Was on Gaviscon 3 times a day, every day and doing OK, so stopped under Paed advice to see how he got on, with advice to give it only if he said he had pain.

Last week collapsed with severe tummy pain. No warning at all so had not given Gaviscon - in fact he was running around playing, then fainted in dinner hall. School called amublance, they took him in as he had high temp and low blood pressure. Hospital discharged as by the time he was examined (3 hours after collapse) pain had resolved after some Calpol, that the hospital administered.

Told to give Ranatidine for 3 weeks to stop stomach acid and see how he does. He has complained of pain every day and night. Not agony, but pain.

Seeing GP again this afternoon.

If one more person tells me 'kids get tummy ache', 'is there something troubling him at school' or 'he seems easily distracted from it', I will lose my mind.

Anyone with ideas, experience, advice? What should I do next. This is causing so much disruption to our lives, to his school work, to his sleep, his overall health.

I am literally at the end of my tether over this now.

Have you checked the water? I had this many years ago when I was at school. The water in our new house was too hard for my tum, my parents put in a water softner, end of my problems.

Have you had help to rule out other food intolerances? They don't all show up in tests. Alternatively could it be a grumbling appendix or something they can scan for?

Seriously? I have never heard of this but we live in a very hard water area. We even have a water softener fitted as he has bad eczema but were told not to drink it as too much could give you an upset tummy.

How did you figure out that's what it was?

I should have also mentioned that I can't give him any multi vitamins as they upset his tummy 12 hours later so he's not digesting things properly.

I was going to suggest coeliac but see you've had the blood test. How old was he when he had the test? In young children it can be unreliable. Also, was he also tested for IGA deficiency (approx 10% of coeliacs are IGA deficient so don't show a positive on that test.) Coeliac UK have info about all this.

There is clearly something wrong, people telling you there isn't (people in RL I mean, no-one's said that on this thread).

Is there anything unusual about his bowel movements? Does he have any bloating? Has he been tested for anaemia (goes with coeliac often)?

Can you ask your GP/paed to refer you to a paediatric gastroenterologist who can do a thorough work up?

Can you get to London? Recommend you ask for referral to paediatric gastro Mr Nigel Meadows at The Royal London or, if finances permit, pay for one-off private consultation with him and then ask to join his NHS clinic.

His brother is IGA deficient and I did mention that when the bloods were done. Tests were only a few weeks ago.

Yes, not far from London, and private referal a possibility as have a family member who would pay for us (we couldn't afford it ourselves).

DH basically ripped into me at the weekend and said this was happening because of me - if we ignored it it would go away, but now it's a big deal, so ds keeps saying he is ill, and that has really knocked my confidence with asking for a referal.

But there's something about the randomness of when he complains of the pain and how it fluctuates in severity that troubles me. And a lot of the time he isn't asking for anything. I will say 'is there anything you need that will help make it better' to which when its a fake illnesses usually gets the response 'staying up with you', or 'a cuddle', but often he just looks sad and says 'no, it just hurts all the time'.

How old is he?

7 - nearly 8

It started about 15 months ago when he had a really nasty persistent ear infection that needed lots of different antibiotics, a ton of painkillers, and eventually micro suction treatment at the hospital.

Ears are fine now. Has had occassional ABs for chest infection as he has asthma (also on asthma meds).

Thanks for taking an interest. Its a lonely job looking after a child's health.

Am going to pm you, hope that's OK?

I was tested for Coeliacs and was told it could only be definitely ruled out by doing a biopsy of the stomach lining, taken during an endoscopy.

DS1 had stomach pains, he had vomiting too, and we were dismissed as neurotic parents. We saw a paediatric gastro at Southampton who did an endoscopy and they found out he had 2 ulcers, one in the stomach and one in the duodenum.

I would be pushing for referrals. It isn't because of you, and it isn't fair on your DS. Good luck.

A year and the GP hasn't referred you? I think that is awful. I would be making a huge fuss, because it is clear that the GP doesn't know what is going on, so someone with more specialist knowledge needs to take a look.

My son was diagnosed with IBS, which started about that age. Once again, tummy pain, strong gripes which would make him go grey and almost pass out, but could pass just as quickly.

Another vote for a Paed gastro referral or a private appoint with either Dr Meadows at the Royal London or Dr Shah at GOSH.

PM most welcome.

I changed GPs a few months ago because of not getting anywhere. New GP dod bloods, sorted out asthma meds, and allergy diagnosis - thought we'd get those fixed first and see what happened. No improvement so mor ebloods. Nothig obvious so referred to general Paed - on day of appointment ds fit and well, and had had no paint at all for 3 weeks - 2 weeks on Gaviscon, one week without (as instructed) so told to just give him Gaviscon if he needed it. I was happy with that as he seemed so much better, then was totally healthy for another 2 weeks until collapse last tuesday. has not been well since then.

Got to go now to pick him up for GP appointment. Feel like crying as no idea what to say.

Has he had a gastroscopy? Seems like they really need to do some much more rigorous investigations.

I don't really understand why they have advised stopping the Gaviscon if that is helping.

It is so hard isn't it? I have two coeliac DSs - it was a long road to getting the first diagnosed, and there was a lot of our concerns being minimised.

It sounds to me like your DS's stomach pains are real. My DS1 still complains of tummy pains frequently. He has been gluten-free for a year, but his latest blood test shows he still has antibodies in his system (albeit at a much lower level than pre-diagnosis) so we are putting it down to that for the moment, and will test again in 6 months. The paed thinks it is because it takes a long time for his body to learn to stop making the antibodies even though no gluten (hopefully) is getting into it. Anyway - my point (which I'm slowly getting to) is that his stomach pains are real, but he - like your DS - is easily distracted from them. I think that's because children are naturally 'in the moment' and have strong desires to enjoy themselves. It's not because the pain doesn't exist.

It sounds like there is a real physical cause behind your son's stomach pains. Definitely push for referral (or take up the recommendation for the private consult). It sounds like your DH is being horridly unsupportive - ridiculous to say it is your fault. I found it hard getting to a diagnosis even with a supportive DH. There is good support on MN, so feel free to tap into that when you need it.

FWIW I have been pursuing a separate, non-stomach-related health problem with my DSs for the last two years, and that is also a long, slow road, which most family members (not DH) thinking I am imagining things. But, fingers crossed, we might be getting somewhere with that now as well.

Could it be abdominal migraine - any sickness at all? My DD suffered for this for years (hospitalized 3 times - drip for five days each time. A lot of attacks started when she was either tired or low blood sugar (e.g. 4.00 am - we stopped those by a big bowl of cereal at bedtime).

He could still be coeliac (if he is IGA negative if that was not tested at the same time) but there have also been cases of negative blood tests but positive on biopsy.

Hope you find the cause soon.

Thanks all for taking the time to reply.

Before the GP appointment I had a good chat with ds and he liked being on the Gaviscon and said he had no pain then - which is also what he said at the time as I was keeping a food and symptom diary.

There was good logic for coming off of that, and for going on Rantadine, which just hasn't worked out.

GP today said Rantadine just doesnt work for some people.

So up shot is we are back on Gaviscon. I am happy with that as I know hospital investigations will stress him out, and mean more missed school, so I want to be sure that we have tried the simplest solution first.

Confirmed with GP that if there is anything else more serious going on, then it would not be masked by the Gaviscon, and if there are any more symptoms or pain persists he will be referred.

What swayed me is that I realized today that his symptoms are worse when he lies down, and he has consistently pointed to the same place on his upper abdomen - where his stomach is, as the source of the pain - and he does not have any other gastric symptoms at all.

Thanks to all for taking an interest and giving advice. Even if I am not following it now, doesn't mean it's not valuable to me - I am in this for the long haul and I won't just accept that 'some kids get tummy pains'.

Well done to all the MNrs that have been through the same with their dc and got them a dx / treatment - it's not easy is it!

I'll jump in here with another

My 7 year old had a similar experience - acute minor illness, sudden onset of stomach pain, 12 weeks of no poo-ing - got nowhere with GP until he said "97% of children with abdo pain have no organic cause. Is he happy at school?", whereupon I went more than a little bit psycho-mum "well, that's as may well be, but seeing as how this has now been three months, during whihc time I've been told it will go away, and it is not, and no-one has done anything to actually investigate it...then, if it's all the same to you... please find out whether he's one of the remaining 3% who actually have somethign wrong"

Erm, which, he didn't...apart from a shocking case of constipation.

Simple constipation - took 5 months to sort out, went up to 15 sachets of movicol a day. Now, absolutely fine.

Yes, I appreciate that GPs see A Lot of of abdo pain, and that mostly, they are of no consequence. But, unless you keep refusing to go away, nothing will get done.

It's a bit wearing. Hope you get an answer soon.

I think he needs a full workup and the thing that keeps coming to mind is hiatal hernia.

What about cow's milk protein or lactose intolerance- have they been ruled out?

I would second migraines. I thought childhood migraines manifested as stomach ache

My dd used to be doubled over with pain. Screaming even. Trip to a and e- told she had colic Thought it was just babies. She was 7ish. Has had problems since almost birth.

Took a specialist gp to diagnose her with chronic constipation 8 years later. She is currently having the worst episode ever at 12 years old. She has a mega colon now. (stretched beyond it's normal size) It manifests it's self as water infections at first.

We are on movicol, mircolax, senna etc. Fillinf in poo charts, fibre charts etc.

No one has ever tested her. I am going to insist this time.

It is a really common problem. Just time in movicol and children into google and you will be met with loads of stories just like mine.

Do they feel his stomach to see if his bowel is full?

Yep - he has had several very thorough abdominal exams - nice and soft no signs of constipation, pain is always just under ribs, either central or to the left - where his stomach is.

Have you had him checked for lactose intolerance?
If you can get hold of a copy of this book, there is a case history of the author's wife, who has severe lactose intolerance; and some others too. It's an interesting read - and if he does turn out to be lactose intolerant, it's useful for telling you about hidden lactose in food, and for good recipes for lactose-free cooking.

I have no interest in promoting this book apart from having read it and knowing it to be a good one.

And has he been tested for Helicobacter pylori infection?