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?

Your poor daughter. This clearly isn't normal and she needs the appropriate investigations and a diagnosis; an endoscopy would be sensible especially in view of her symptoms. If your local paediatricians are not willing to investigate further, I would ask your GP to refer you for a second opinion to a paediatric gastroenterologist in your nearest specialist paediatric hospital (eg Great Ormond St, Birmingham Children's Hospital or any of the teaching hospitals that are attached to a medical school etc) in order for her to have a more detailed assessment. You may have to be quite assertive in order to get this referral but it is important. This is going to impact on her physical and psychological health and well being, her schooling etc etc.

I would emphasise that she has pain at night that is stopping her from sleeping; any doctor will realise this is abnormal and is highly suggestive that there is some pathology eg ulcers that needs a diagnosis and appropriate treatment. Good luck!
(PS I am a Dr but not a paediatrician by the way)

Is there mucous when she poos, is there a very distinctive smell different to normal stinky poos?

Mucus. Thanks phone.

Dd1 gets lots of abdo pain with mild constipation ( although caused wetting when first diagnosed) slowly been through dietary changes she's now dairy free soya ( this one seems particularly bad for her) and now gluten free. She still has intermittent stomach aches but they are sooooo much better when she dies get them we manage with calpol and heat pack. She also has movicol daily to help the constipation . Stress does cause an increase in the stomach aches too.

So sorry to hear your DD is suffering, ask to be referred to a gastroenterologist and then ask about Intolerances (Fructose, Lactose, Sucrose, Glucose) and celiac..

Your DD's suffering sounds similar to my DD, we went through 2 years of my DD suffering very badly and all kinds of tests with no diagnosis , we too got the questions about school and is there anything happening at home etc. She was very poorly, she was eventually diagnosed with severe fructose and lactose intolerance.

Her symptoms were terrible stomach ache, reflux, headaches, dreadful gas and burping, diarrhoea & constipation, awful bad breath, very underweight but with a bloated stomach, really pale with black circles around her eyes.

I was eliminating foods, keeping food diaries but we were unable to pin anything down as being the cause, because as we now know fructose is in everything, so pretty much everything we were feeding her was causing her terrible problems, even the multi-vitamin I was giving her had fructose in it.

It was a gastroenterologist who eventually diagnosed her, the diagnostic tests were hydrogen breath tests. The blood test which the paediatrician did and ruled out lactose intolerance is apparently not a diagnostic test at all and same for celiac blood tests, only definitive test for celiac is an intestinal biopsy. If you are going to have her tested for celiac, do not remove gluten from her diet, she will have to be ingesting gluten to get a true negative or positive result

Within about 10 weeks of removing fructose & lactose from her diet, she was a different child and looks so very healthy now despite only being able to eat a very limited range of foods.

Good luck, I hope you get some answers, it is awful to see your little one suffering and not know what is going on..

I had similar to this. Achalasia was what it was in my case. It's when the sphincter at the bottom of the oesophagus over grows and stops letting any food through. I had to throw up after even a sip of liquid eventually, I got to the stage where I couldn't even speak in full sentences. Turns out my oesophagus was full of food and had grown to crush my trachea. Any standard x Ray would have picked it up, but I never had cause to have one. I was eventually under the north west lung centre at Wythenshawe hospital (UHSM) as it seemed like I had massive reflux and unresponsive asthma. They gave me a scan and worked it out with brilliance (I don't think this stuff is obvious, even for seasoned practitioners, and they are on the top of their game). I had an operation. Heller's myotomy (they cut through the sphincter) and anterior fundoplication (they fold a bit of the stomach round to stop you getting reflux after the sphincter's out of action. Excellent, excellent surgeon. Incredible team.
This may not be what your daughter has, but they need to rule out achalasia. As I said, mine was so extreme my trachea was being crushed - hence not breathing well. Most cases aren't so far gone.
Good luck to you and you little one. Acid reflux is horrendous. You might not be able to have it if you're little (can't remember) but remegel was my favourite over the counter treatment. And bananas and custard xxx

Your poor dd, My DH has similar and has had so many tests all coming back negative, They now think it might be candida which is I think like thrush and can cause all these symptoms. Hope she finds some relief

Two weeks of dairy free and then two weeks of gluten free isn't long enough. It takes 2 weeks for gluten to leave the body completely so you may see no change in this time. I don't know how long it takes for dairy to leave the body completely. Going by information I've read, you need at least 8 weeks to really assess if these common allergens are affecting your dd.

Twofor

Candida causes leaky gut as the spores grow and puncture through the intestinal lining. Food particles then spill through the holes in the gut and into your blood stream, which trigger an immune reaction and the reaction causes food intolerances. It's a lot more than thrush.

See a dietitian that specialises in low fodmap.

How long should I try dairy and gluten free for to see if it has any affect?

OP with all the best will in the world I wouldn't start excluding anything without some professional support and guidance. She is under a consultant and your GP so do prepare a list of questions and queries but if you start trying different things you might affect later tests and possibly won't know what is helping.

However, re the constipation, it would be fine to add a softener such as regular lactulose if she is passing droppings and straining.

Ther referral to a paed gastroenterologist sounds a very good plan and I agree about analgesia until she is sorted out.

Good luck.

You will definitely know if they are any issue by 8 weeks, probably by 4 weeks. And many people see improvements after a couple of weeks, but not everyone so that's why I said 8 weeks because I've read that the 2 weeks recommended by some isn't long enough and a couple of months is better. Definitely do it for at least 4 weeks.

You really are flying blind though because so many people have suggested many physical reasons for her symptoms. It's a bit of a minefield, I know. Seeing a dietician isn't a bad idea. You can google fodmaps online. This is a good diet for people with gut issues. I haven't explored it myself as I know my body really well but I met someone, who swore by it for helping her to get improve her chronic fatigue. She saw a specialist in fodmaps as they do testing as well.

Have they tested for Helicobacter pylori (H. pylori) OP? I suffered for years as a child and it turned out to be the cause. The right anibiotics cleared it very quickly iirc.

OP exclusion diets only 'work' if you do them over 6 weeks, I'll try and find a digram now that explained why...

My last post was wrong, sorry (I mis-remembered). Here's a good post that uses the same format as loads of other nutritionists - I've worked with a few although I'm by no means qualified myself!

greatist.com/grow/easy-elimination-diet-for-food-intolerance

Basically, you rule out everything for 3 weeks to let your immune system 'reset' and then reintroduce different foods, one at a time, over 3 weeks to see what is causing the bad reaction.

From what you've described though, I'd definitely insist on seeing a specialist doctor as it seems way more serious than anything a nutritionist could help you with.

However, many nutritionists offer a free consultation so it might be worth calling a few in your area and seeing what they think.

One thing I would definitely advise against (at least at this stage) is a food intolerence test that you can buy online. These do not work well/accurately especially when the symptoms are at their worst.

Yes it might well be an idea to see what the gastroenterologist says. I find excluding easy because I've done it for life, so sort of assume it's easy for everyone.

Decades ago I was referred to a dietician on the NHS who put me on an exclusion diet. That maybe something you could ask for if you have no luck with other specialists.

Mummyoflittledragon wrote this
"I drink a little diluted raw apple cider vinegar (raw with the mother, which I buy from Amazon)"

Same for my husband, he used to mainline Rennies because of his acid reflux, started taking apple cider vinegar and now he's fine. It seems counter-intuitive to take an acid to relieve the reflux but it works. We brew our own raw apple cider vinegar now (which is easy, there is a site called Entropy Kitchen you might want to check out), but buy Braggs if not. I also agree with her general advice for cutting out dairy and sugar, husband much healthier, we think he has a lactose intolerance.

Ampers

Yes, you're perfectly correct about low stomach acid. I've read a majority of people have low stomach acid, which is often the cause of acid reflux/indigestion. The stomach is desperately trying to make enough acid to digest food and in our stupidity we take a Rennie because of the discomfort. If the stomach doesn't create enough acid, food sits and festers in the stomach and can cause the sort of issues mentioned by op as well as malabsorption. But it doesn't mean this is the issue with her dd. I take Betaine HCI with pepsin to up my stomach acid. I use Braggs acv btw.

The Betaine isn't for your dd op at least not without very knowledgable supervision or for someone with an ulcer as it will make the ulcer worse. This is hydrochloric acid. And you don't know what is causing your dd these issues.

However, taking acid cider vinegar whilst using lansoprazole and gaviscon is really cancelling one another out. That's why you really need to see the gastroenterologist and if possible a nutritionalist/dietician. If she has something wrong with her stomach beyond the food intolerances we are discussing, acv could hurt it.

In this area a child doesn't see a dietitian unless they are very underweight. If overweight they are all referred to the NHS weight management program for children, even if it's neither use nor ornament eg autism ( with restricted diet), significant learning disabilities, etc.

Just so the OP is forewarned, as different areas have different policies.

Have you seen a paediatric gastroenterologist and can you get to London or a major teaching hospital? My DDs were both like this and aged 13 and 15 still have problems, the youngest is just going through the diagnostic process now, we are looking at allergy testing.

Its impossible when you've seen your child sobbing in pain all night to then get them up at 7.30am and tell them its fine for them to go to school.

Not read the whole thread but feel for you and your dd. We also went through sheer hell with similar stomach problems. I remember we also had the questions 'Do you like school ect constantly' which totally sends you batty when you are litterally at your wits end and your child loves school and you hear it over and over again. One of my threads www.mumsnet.com/Talk/allergies/2062823-Can-you-be-lactose-intolerant-but-not-suffer-from-diarrhea
We never really solved it. Reflux and stomache migrains were mentioned and ppi prescribed/tried omeprazole as well as anti spasm type meds mebeverine and buscopan. Calpol would not touch it. Pead would not entertain it was allergy related at the time - god knows why. Was hoping to get a camera down and did discuss with pead at one point deparate as i was certain about ulcer but never did progess to that in the end as they wanted to try more meds first and we didn't want anymore. She got so bad another doc ended up recommending a strict bland diet eg chicken carrot rice ect and doubled her ppi. Later we stopped the meds as we needed a clean slate if that makes any sense and had seen no improvements. Also went lactose free for spell and dairy free giving rice milk, all our own doing. Went to the doctors more times than ever in our lives. We too had to force dd to school in pain, drove me to tears so upsetting. Ended up with a letter fom council about her attendance, was laughable. In the end, now it is over, we and pead agrees something possibly caused gastritis inflammation in stomache which caused every food and drink to cause issues, she also had reflux. The pain eventually disappeared but took so long - dd's pain was above belly button and even triggered drinking water in the end. But even now she still feels sick after very little food on regular occassions and does not each much. Its a mystery. Dd is allergic to many things always has been, is very burpy, gassy, issues with constipation on movicol 1 sachet daily since primary age. She did stool samples, tested for celiac, hyplori, blood work,anal examination, urine test. I feared chrohns also. She was secondary school age at the time of severe stomache issues. I can honestly say it was the worst time of our lives and I fear it comming back- so sending hugs to you both. We did not get support we needed medically, doctors/nurse practitioners were pretty useless, pead ok ish but was hard to get to see in your time of need. Also I hate pills to fix issues without diagnosis first esp in children with sensitities/allergies. I hope things improve for you and your dd asap We know what you going through. I can honestly say I felt like they thought I was a crazy women making it up, one drop in clinic doc looked at my dd and said you think this is bad wait till your periods!

chloesmumtoo

I'm sorry to hear you are going through something similar. I know how you feel just wanting to stop the medicines as they are not giving a good enough result. I sometimes feel the same.

Yes it is so difficult to know what is best and so challenging. We are in a better place since the stomache pains/flare haulted. The feeling sick when eating dd moans about niw but copes with, it's mild but still unerving incase it all returns. She would not eat or drink prior to school for atleast a year after the bad flare up and I just had to leave her be. Now she is eating breakfast and has gained weight and managed to move back up into classes she was moved down from. It had such an effect on her grades so understand completely about your dd not being able to concentrate in school.
I think you have had most advice on here already as to what we did. Heat packs for pain, limiting the reflux inhancing foods, raising head at bedtime, small portion sizes, not eating too close to bedtime ect. As for the Movicol what doses do you give? Was looking back into my history and found a thread where we did not get on with it at first. Recieved lots of advise to stick with it and here we are ten years on. Reading back at five years old it seems dd found just half a sachet a day did the trick. I remember I had even alternated days at times experimenting. Dd now has only one sachet a day in her teens. She cannot stop taking it else blocks up very quickly and bleeds within days, very strange.
When dd was put on anti spasmodic type meds for stomache pains it ended up constpating her as my other thread mentions so beware of that. We had to then double her intake of movicol during that time.
We never got a scan of her stomach. Was mentioned and then when I kept going back to the doctors they would say well we'll try this first. So frustrating. We did notice later on, that pain could trigger with stress, like doing difficult homework but sometimes pain happened with no links to stress at all. You worry doctors think it is all sycological when it is not but evidence does show links of stress agrevating reflux, ulcers, chrohns flares ect so it does become a vicious circle.
I worried about the ppi use and did not keep her on it. I still worry about not having her on it too. Every day she wakes with a sore throat but this did not go when on ppi either. She does not get reflux now in her mouth but did when everything flared back then along with many bouts of hic cups. We also found strangly that when we ate less good foods on hectic weeks she was better than when we ate good veggie meals. So whether the veg was harder to cope with on the stomache/bowel at that time we don't know. I did find a site which said something simular. I had done food diaries for years so recommend doing so to spot any links.
Dd does not drink enough, I dont know about yours. In the summer she also lives on cetirizine for allergies. Also has inhalers but not a severe asthmatic. There are links to reflux using inhalers too. So much to research on medications. When they checked my dd's stool sample for raised calprotectin/inflamation it came back raised but turned out to be affected by the ppi she was on so be warned on that one as it can mess up results, doctor did not know grr.

Get her tested for coeliac disease but don't put her on a gluten free diet until she is tested. The initial test is with a blood test and then a biopsy to check the small intestine if you go gluten free before this test the damage to the small intestine from the gluten will have repaired so the test will come back negative. Coeliac disease is an auto immune disease which can have loads of symptoms some of which would be constipation, tummy pain, sickness, loss of weight, poor growth. I really hope you get to the bottom of it because it is so stressful to see your child in so much distress. My dd3 was diagnosed coeliac but before her diagnosis she was so ill and wasting away before our eyes. Post diagnosis and gluten free she is like a different child never sick, gaining weight, growing well and full of life.