To ask for any advice, my daughter has had stomach ache for over 2 years

[Imsolucky1983]

I am at my wits end. My daughter started complaining of stomach ache and "sick" coming up her throat age 5. After a year of doctors visits I eventually went to a&e after being up for 8 hours with a screaming child. We were given a diagnosis of acid reflux. Gaviscon didn't help. Ranitidine helped about 50:/: we are now on lansoprosole which has helped about 75:/: but we are still having about 4 attacks of a "burning stinging" stomach a night, and about one episode of heartburn a day. My dd is now 7 and is so fed up, she asked me if she will feel ill forever we are under a consultant they have done an ultrasound of her stomach, tested for a bacterial infection with a stool sample and done a blood test. We see them again in a month. They are not overly concerned though. My dd is finding the pain so upsetting though she has even had to have a few days off school when she has been awake with the pain at night. She has said it's hard to concentrate on her work at school when the pain is really bad. She was even in pain on Christmas Day. I've noticed it is worse in the hours before she does a poo. We are currently trying a dairy free diet as her younger sister has cows milk protein intolerance but so far it has not made any difference. We have tried probiotics which help with her mild? constipation, although her ultrasound showed a lot of poo but they were not concerned. We have tried movicol but that seemed to make the pain worse. She has been tested for cealiac. We have taken her to a cranial osteopath. We have increased fruit veg fibre and water intake. We have tried gaviscon in conjunction with lansoprozole. I am at a loss. Does anyone have any experience of something similar? Or any ideas of other things we can try?

Thanks for all the replies. She was tested for cealiac at our last hospital visit and that came back clear. Is it still worth removing gluten?

She was also tested for h elicobacter pylori

I have a thread in health too and somebody mentioned mesenteric adenitis

dd has had a chesty cough this weekend and her stomach pains have been out of control so I think this is worth a mention at the doctors tomorrow, if we manage to get an appointment. The symptoms seem to fit, although it doesn't explain the heartburn.

Regarding removing gluten, you will probably get differing opinions. I personally would remove it. Many people are sensitive to gluten without being celiac. I know it's an on trend thing to proclaim gluten intolerance. But sensitivity to gluten is on the rise due to a number of factors including diet, intensive farming and genetic modification. Consequently the actual strands of gluten are getting longer and longer hence more difficult to digest.

I would also advocate removing gluten to see if it helps , my daughter was also experiencing pain and had various tests including endoscopy colonoscopy everything came back "normal" however the GI specialist said the pain will have a cause but we as yet can not find it but it doesn't mean its not real. We eliminated gluten and she is now pain free , had to be really strict for few weeks.I hears that you can be coeliac light ie not show on blood tests but still have symptoms of pain etc when eating gluten.
The other suggestion can be stomach migraine which would require medication but it does work.

She inadvertently ate some chips she thought would be fine a few weeks ago, and then found out lots of frozen chips are coated in wheat flour to speed up crispiness and had terrible stomach pains so well worth eliminating and definitely not a "fad" as some would have you believe.

away my DD has problems with frozen chips as well there's some sort of coating on them even the "plain" ones, however when we mentioned this to the paediatrician he said in a jolly voice "well YOU could certainly do with cutting out chips in any case!!"

I took DD to a locum today who said she is very constipated. So we are trying movicol. The constipation could be causing the heartburn maybe? We will give the movicol a try and see what happens!

Glad you got some sensible advice. Movicol will take months to work effectively so be patient. Have a read of the NICE algorithm for treating constipation in children. Sorry can't link.
And still consider asking for referral to pad gastro.
Good luck

You might also want to consider abdominal epilepsy as a possible reason.

It's rare but does happen and it seems most of the most common possible causes (coeliac, h pylori) may be considered to be ruled out.

I agree a referral to a specialist is necessary.

I'm also another who had a childhood full of stomach issues and when I went veggie (for other reasons) they pretty much cleared up. I've heard of this from a few veggies, yet there's little to no research on it. To my mind if you can be allergic/intolerant of dairy, gluten, nuts etc why not meat? On the rare occasion I've accidentally ingested meat protein I've had terrible cramps and diarrhoea.

The test for celiac isn't very reliable, so worth seeing if removing gluten makes a difference.

It could also be a hiatus hernia as previously mentioned. Or IBS.

Another thing worth considering is that it might be a combination of things. I had a stomachache for about a year. Going gluten free and dairy free helped but didn't totally solve it.

Consultant diagnosed both post-infectious IBS and a hiatus hernia. Bad bout of food poisoning left me with the IBS, and the throwing up during the food poisoning had caused the hernia.

An upper GI endoscopy that discovered the hernia, and post-infectious IBS diagnosis was made based on history, and the fact that low FODMAP diet eased symptoms (both gluten and lactose are fodmaps, that's why cutting them out earlier helped).

Raising the head of your dd's bed could help if it's a hiatus hernia (might also help demonstrate if it might be an hh). it needs to be by putting the feet up on bricks, not propping up on pillows, as body needs to be straight. Needs to be about 12" higher than foot of the bed. Also low acid reflex diet can help.

Calpol might help with pain when pooing and then help constipation

Imsolucky I spoke to my daughter's paediatrician yesterday, he's now suggesting a dermatologist which I think is a waste of time and an exclusion diet. He said try excluding caffeine, fatty or spicy food, no takeaways and worst of all no tomatoes - no ketchup no pizza no pasta sauce - he said not to exclude gluten or milk etc for some time as these are the things to cut out first.

Can you just remind us OP has your DD had an abdominal ultrasound?

(sorry - very clumsy sentence there- he meant the spicy food tomatoes etc is the best thing to cut out first leaving gluten till some way into the exclusion diet period)

Have you been given advice on laxatives? My gp told me to use lactulose for months, even years if I needed to for my dc. It takes up to 24 hours to take affect and you don't stop when they have a normal poo as they'll revert back to being constipated again. Get the dose right and keep using it until your gp/specialists find out why she's getting constipated.

www.nhs.uk/conditions/Laxatives/Pages/Introduction.aspxn - this info on laxatives. Lactulose works by drawing water to the bowel to soften the poo. I believe movicol works the same way. If her poos are hard you will need to use a laxative long term.

The stinging tummy indicates another issue which may be causing the constipation, but if you treat the constipation you'll relieve this symptom somewhat. I give 5-10ml lactulose to my toddler daily, but you may need to give more - check the bottle. You can give it straight or in a drink. Keep using it even when the poo is normal again as you won't have solved the cause of the issue and it will happen again.

Long term calpol use is not good due to the paractemol. Also it can cause constipation in some dc. If you need it for more than 3 days go back to the gp and insist they give you an alternative (easier said than done)

Write down all her symptoms. On a separate sheet write down all the tests and results over the years. On another sheet record what medication you give and when. Take it all with you whenever you go to the gp/specialists so they have all the info clearly in front of them.

If it does turn out to be a chronic acid reflux issue push for linx surgery. It's a keyhole surgery and completely life changing. One of my best friends suffered in a way similar to what you are describing for years and years and years, at 21 he was the first ever NHS patient to have Linx surgery which is essentially a magnetic ring around the oesophagus which stops acid leaving the stomach but allows food and drink down. He's now 27 and It completely changed his life where no medication has ever been able to.

toptoe thank you that's really useful information. And I will write everything down that will be really useful to show the doctors so they can see where we are at. We have done just over a day of movicol so far but no movement apart from a few hard pellets.

Even if she's on large doses of movicol it can still take days to work. And then my god can it work.