Help with terrible gut pain every night

[emlitt]

Hi chaps,
My DD is 21 months and for the past 17 months has suffered agonising gut pain every single night. She's under a paed gastro at Great Ormond Street but I'm beginning to lose faith and hope. She's on gluten/wheat/dairy/soya/fructose - free diet
antihistamine and anti-allergy medicine

• all to no avail. She hasn't had an endoscopy or laparoscopy or scan as the doc thinks it's pointless. He's convinced she has allergic cells in the small/large intestine and inflammation.

Basically she and I haven't had any sleep for a very very long time and she is in agony and crying out 'NO!' at night. I just don't know what I can do.

Have tried cranial osteo and probiotics etc. Also massage.

sadly, some children have this as a result of vaccinations.., sorry no help really, hope you can get to the bottom of it

Thanks nightcat, I really appreciate any replies. I don't think it's vaccinations as she had to have them delayed and her problems started before the vaccinations took place. Thanks, though.

what medication have they tried?

Ketotifen, nalcrom, cetirizine...

if they haven't done tests, how do they know it isn't reflux?

(I mean how do you know it's gut pain not just plain indigestion)

did you try gaviscon or omeprazole?

hiya

yes I immediately thought reflux

but I'm guessing a gastroenterologist at Gt Ormond Street would have thought of that?

it might be worth trying something like gaviscon/omeprazole/the baby antacids if you are at a loss as to what it is

I'm surprised they don't want to test her though

do you think she's got used to waking now too? I do think that can be a factor

dd had a v problematic gut for about the same time period but it did start getting better luckily

If dairy free, do you use soya substitutes? When my ds was given soya milk and was unwell, I tried it myself, my God, I was in agony! Then I flushed our supplies down the drain and we stopped dairy & formula altogether.
Later we reintroduced small amounts of dairy (at 1 meal only), he now has some dairy but mainly goats.
Are you keeping food diary? Try experimenting with evening menu to see what triggers it.

Hi nightcat and foxinsocks and DickyTum

Unfortunately I spent months under the illusion it was reflux under a different paed gast and she was on every reflux medicine you can imagine including ranitidine and losec. I always doubted it was reflux because the spasms are so obviously lower down, right down at the lower bowel level. She's actually soya free as well as diary/gluten/wheat/fructose free (or rather low fructose as fructose free is impossible) so soya's not the problem, I only wish it was nightcat.

They say it's self-limiting but from experience should go by the time she's 3 or 4....!???!

It's not just waking up, I wish it was, she writhes around in agony with her eyes shut because she actually wants to sleep.

She is supposed to have allergic cells in the lower intestine causing pain and inflammation, which comes on at night because you eat during the day and the food takes 9 hours to hit the bowel.

Tried keeping a food diary but it's bad every single night so gave up. All she eats is rice, fish, quinoa, potato, broccoli, sweet potato, squash, carrot, cashew nuts and french beans. Plus gluten free bread and biscuits.

What age did DD get better, foxinsocks?

I thought they must have ruled it out nightcat!

this was almost 10 years ago now so I'm not sure their understanding of the gut in infants was even where it is now (e.g. at that time, they didn't regularly prescribe omeprazole for babies).

Dd was diagnosed with an 'immature gut'. She definitely had reflux along with it. She had a dairy, egg and soya allergy and showed sensitivities to so many foods, like you, we stopped writing them down (peas, fish, chicken...the paed tested and the only true allergies she had were dairy, egg and soya).

She didn't sleep continuously for any stretch till around 15-18 months. Things definitely improved then but she was incredibly sensitive for another year or so. I actually gave up work to look after her as I couldn't cope with both dh and I working full time and the lack of sleep and inability of anyone else to take care of her (nursery practically refused to have her!).

Your situation does sound a lot worse - I'm sorry she is suffering so much.

I can't tell you how frustrated it made me feel to have someone say 'she'll outgrow it' but in truth, she did though she (like me) continues to have a sensitive digestive system.

I guess you are in the best place for her though if it continues, I guess I might want some tests done, just to rule out other conditions but I imagine your consultant knows best.

why do they think an endoscopy and/or laparoscopy are pointless?

she hasnt got crohns has she. Its just with the pain being lower down..and it would account for the severe pain.has she had blood in her poo at all

Please feel free to shoot me down over this, but I don't suppose a level of it could be psychosomatic?

By that, I don't mean that she is imagining the pain, but that she had the pain when she was younger and now expects the pain at a certain time each day and therefore the stress and worry of this means that the pain comes on?

I'm sure the gastros have thought of this anyway, but anecdotally (I am no specialist by any stretch!) children can be quite susceptible to these things.

Does it differ if, say, you're on holiday, or she stays with a grandparent? Something to break the routine of bed = pain?

Good luck with it as it sounds really distressing for all of you

Here are some symptoms of Crohns I'm pretty sure she will need a biopsy to diagnose Crohns if this is the problem. It can come and go, symptom-wise.

did her tummy pain start after any particular infection of any sort as i am also thinking that it could be mesenteric adenitits. This can be a problem for children who have had infections in quick sucession and it can take a while to clear

Hi alypaly mathanxiety Ozziegirly blinks & foxinsocks

Thanks for all help - gratefully received.

Crohns definitely needs to be ruled out, but I don't think DD's symptoms quite match. It's a similar thing, but very linke foxinsock's dd's problems were. It's good to hear they grow out of it eventually, but she could be 3, 4 or 5 by then, and it's actually getting worse each night. She's okay for about 3 or 4 hours and then the spasms start and she starts screaming. As soon as each spasm passes she drops straight back to sleep - she's so tired. It's hard to explain but there's no psychosomatic element. The doctors have seen it before so they don't question that the pain's genuine. It seems so unfair that she has to suffer so much pain every single night. If it were an adult we'd take something to help us through it. I mean, as well as trying to identify and treat the underlying cause. I wish there was a painkiller that's better than paracetemol or ibuprofen that infants could take but I don't know of one. Calpol etc does absolutely nothing. The doc said the only painkiller that works is morphine.

Now we at last have made enough fuss to get a scan which is a start. I don't expect it to show anything but it'll rule out anything really weird like a twisted gut etc.

alypaly I'd like to know more about mesenteric adenititis? Don't know what it is. She had a terrible intestinal virus when she was tiny - and premature - that went on for couple of weeks or maybe more, and the term postenteritis enteropathy was mentioned by the paed gastro - but he doesn't like to use labels like that he said.

I think the paed gastro is reluctant to do the endoscopy etc because it's so traumatic and usually it doesn't show anything - just confirms that there's inflammation in the bowel and that there are allergic cells, but not what you're allergic to apparently.

I really get what foxinsocks is saying about giving up work and not being able to send dd to nursery and all that stuff - it's all happening to me like that. I don't get more than about an hour sometimes at night and so function at a very basic level!
\

Have you checked side effects of the drugs? Some are known to cause stomach pain and what's worse, some are only treating symptoms not the cause. Maybe there is a painkiller that could give you a temporary help, but you also need to think long-term in terms of absorption (poor gut could lead to other problems).

Tough, I know. My ds gut was wrecked by iv antibiotics when tiny, took years to get over this and we never abandon g/f diet.

If it was me, I would attempt to live on home-cooked food only, avoid bread generally (even g/f), stay on good probiotic (with various strains), watch corn and try and reduce drugs that could have side effects.

dd also had gastroenteritis very early on. It was all the nursery's fault. They kept feeding her foods she was allergic to and her intestine health got worse and worse and eventually she was hospitalised with allergic problems and a nasty gastro virus she had picked up at nursery but to be fair, her problems already existed then (but she was only 4 months old, I had gone back to work then ).

Anyway, I pulled her out and took everything back to first basics. When she was about 9 months, I stopped all her food and just gave her milk then started again by adding really small things bit by bit (pear, carrot) etc.

Listening to them scream is too awful, I'm sorry you are going through it. On top of the physical exhaustion, I think you suffer an intense emotional exhaustion from that too you know. What milk are/were you feeding her?

milk=nutramigen

Even though you're really tired and going around in a haze probably, it's worth really pressing the doctors. So sorry for what you're going through, and your poor DD.

mesenteric adenitis is usually caused by a virus which can be anywhere in the body. As an immune repsonse,the bodies glands swell up,anywahere in the body,and in children the ones in the abdomen can react quite fiercely to a bacterial or viral infection.With a severe gastro enteritis in a prem baby it can affect the villi in the intestine and cause them to atrophy.(It causes these non descript stomach aches that children cant pinpoint.) And in general they just say their tummy hurts and it is all over their abdo . It would be more worrying if it eminated from a small area all the time. But adentitis causes some children alot of pain and it can take many months or even years to clear up.

I know this is going to sound a little off the wall, but could your little one have irritable bowel?

The spasms you describe and the timings, suggest your poor little one is going through what I have had for as long as I can remember. The pain is like colic only futher down, and beleive me it hurts!!

When I was born I had an immature stomach flap so couldnt keep anything down. Plus all sorts of problems with colic etc. The docs put my on a dairy free diet, but mum swears blind the soya did more harm than good!

It was only diagnosed eventually around 15 years ago (i am now 35) when I had every test going and nothing ever showed up for the results. My mum is sure it is because of a really bad case of spanish tummy that I had set it off, and my stomach/digestive problems i had when I was a baby

i control mine through diet, stress management and anti spasmodic medication, and after many frustrating and painful years, it is now touch wood under control.

i take it you have tried warmth to the tummy and rubbing gently anti clockwise? The only thing with a baby is that you cant tell them to relax and breath when their little tummy is doing somersaults!

If your doc is being unhelpful change them if you can.

I have no idea what they can do to help one so young, but you and your DD have my sympathy, and I hope they find what is wrong soon.

Well dd has had an ultrasound of the abdo to eliminate anything really bad or unusual (which it did) and another paed gastro appt at GOSH (great ormond street). The result of this is that we'll keep on the soy-free diet for another 2 weeks before going for an endoscopy and colonoscopy. The idea is that, as dillie suggests, it is almost IBS that she has, but is caused by allergic cells in the bowel for which the only test is elimination diets - as you all attest. I'm interested in this mesenteric adenitis idea alypaly and will look into it further. I really appreciate the experience of others' who've been through this and come out the other side. Blimey, it's tough.I hate the sound of what poor foxinsocks went through especially with the stupid nursery. ds more of less doesn't eat anything except rice/quinoa/veg/fish, occasionally egg )which she isn't allergic to). I am given the encouragement to keep going but really it's tough!!!!

Good luck, and best wishes to you and the DD. I hope there'll be a resolution of all this. What an ordeal for you.

Hi
foxinsocks if you're around, dd is on neocate so-called formula - have you heard of it? It's an empirical food, simple amino acids and nothing else apart from vitamins etc. Kids allergic to everything or intolerant to everything are given it instead of food. The next stage is to get dd onto this and take away all food for 6 weeks, which will be hell but what else can I do... Anyway it tastes revolting and she hates it so that'll be interesting!!

Just wondered if anyone else has had to neocate their babes.