Oh I just want scream. Tell me what I need to be asking at ds2's appointment with gastro.

[tutu100]

This is going to be a long post and I have posted before for advice with ds2, and people have been really helpful.

Ds2 was admitted to hospital at 19 days with distended abdomen and suspected hirschsprungs. This was eliminated and I was told to eat a dairy free diet (was bf) to see if things improved. They didn't seem to so I stopped. Ds2 had bowel wash out and then suppostories to make him poo for several months. He also had his bum hole manually streched. Weaning went ok but then he started to get very runny, sulphury smelling poos. I bf till 11 months, then we tried him on formula. He vomited after every feed and developed terrible diahorrea. We got referred back to the consultant who we finally saw 3 months later.

During this time we did cut out dairy and ds2 improved a bit but not completely. The consultant thought he had an immature bowel and that he would get better in time. He said to try reintroducing dairy, if it made ds2 ill to cut it out again for a few weeks and then reintroduce it again. We tried this but everytime ds2 had dairy he got awful wind, tummy ache and diahorrea when we cut out dairy his poos returned to normal but he still suffered from wind and tummy ache at night. Anyway he has been completly dairy free since May and in the last 4 weeks he has had no tummy ache at night (apart from a couple of incidents when he was given dairy be accident).

What do I need to be asking for at his appointment next week. Last time we went the consultant said ds2's symptoms weren't consistant with a dairy intolerance, but it seems so obvious to me. I finally have a happy child who sleeps through the night rather than screaming with tummy ache. Is there a definative test that can be done?

Sorry for the epic post but several things have happened today with regards to this that have really upset me so I want to get this sorted.

Do you have a 'general' Paediatrician? When DS was an in patient and seeing a ton of consultants, I grabbed the consultant on duty at the time and said there needed to be a care plan as it was seemingly hit and miss. So, he started coordinating various tests, so DS wasn't getting all sorts of unnecessary tests.

So, what you need to know, is whether DS problem is a gastro issue? If not, will he be referred? Is there a general Paediatrician who you could request? Reason being that it can be difficult to get referred back, and once discharged from the hospital, even as an outpatient, you may need to start the whole process again.

You may want to ask why he is of the opinion that elimination isn't valid. Effectively you have taken dairy out of his diet and he is symptom free, so why is this not consistent with a dairy intolerance?

We currently see a gastroenterologist as once ds2 had the hirschsprungs ruled out thats who the surgical teamm referred us to. The gastro has been keeping us on his books so that if ds2 has more problems we don't have to wait to be re referred back to him.

I think part of the problem is ds2 has never has a definate diagnosis. It has always seemed to be treating the symptoms and waiting to see if he will improve on his own.

I am rubbish with asking questions and always feel very rushed and hurried in appointments. It doesn't help that ds2 is normally screaming his head off after being examined.

Thank you for you suggestions, I am adding them to my list now.

Sorry I should have added that really all through ds2's treatments the dr's don't seem to know what the problem is exactly but they are sure it is his bowel. It was only 1 dr on the surgical team who suggested I cut out dairy as she noticed I have excema and was thinking of possible genetic links between eczema and allergies/intolerances.

Hi, it's sounds like dairy but just wondered if you have had him tested for Coeliac disease? Distended tummy and foul smelling runny poo and wind can be symptoms and you can get associated lactose intolerance with Coeliac Disease.

He hasn't been tested for ceoliacs, but my brother has ceoliacs and I don't eat gluten as it makes my excema much worse so there is a family history there. I did wonder if it was more than just dairy as his symptoms improved with dairy cut out but didn't stop completely for a couple of months.

However the last few weeks when he has seemed to have no problems he has still be eating gluten. I am going to ask about this though.

tutu100 - I don't want to worry you or make things hard but the peadiatrician could be correct about there not being an intolerance.

I have had similar bowel problems for 20 years and been tested for cealics (even dr was shocked it was negative) and have tried elimination diets. Unfortunatly when one thing works for a while eventually it doesn't or when something takes a while to work (or I think its taking a while) actually I just happen to be having a good period.

It is possible that he can't digest certain food in combination due to fat content. solubility etc. This seems to be my main problem.

Do not dispair though as simply you and ds will learn what he can and can't eat and how much in each cobination and symptoms will be controlled. There just isn't always a defionate answer.

I do really hope you get some answers for you and ds.

Thanks Mumbar. I did question whether it was dairy as for quite a while although his symptoms improved they didn't go away altogether which I thought they would fairly quickly. It's just that now we have had several weeks of him being "normal" with exception of a couple of times when he was given something by accident I guess I feel it seems more obvious now.

It's difficult isn't it when you can't get a definitive answer. I am always worried that maybe they have missed something (after all the urgency at the beginning) and one day it'll turn out that we could have done something a lot sooner.

DP was telling me off tonight for getting so worked up over it, but I just feel awful that we allowed our son to be in such pain and discomfort for so long. I guess as you say as long as we work out what causes him problems and avoid it, it doesn't matter about a "proper" diagnosis. I just want him to be happy and pain free.

Mumbar do you control your problems through diet alone?

Sorry I should clarify he isn't constipated anymore. He poos are nearly normal (slightly looser than I would expect) unless he has something dairy when he get diahorrea. He definatly drink plenty.

I think the reason the doctor doesn't think it's ceoliacs is because the problems existed before he was weaned and eating gluten, but I will ask whether he thinks we should have him tested now given the family history. Also ds2 is quite petite (25th centile) his hasn't grown much for months and I'm worried thats because he's not absorbing nutrients correctly.

yes the petite thing could lead to a thought of cealiacs it was that and chronic aneamia which made them suspect me - and it wasn't.

I can lessen my symptoms with diet eg not too mcuh wheat dairy and food high in saturated fats but I do have flare ups and have been given a diagnosis of IBS after ruling everything else out.

I have lactulose, magnesium hydroxide and fybogel however they worked for a long while then seemed less effective so now I'm not taking anything at all and just trying to work out my triggers without medications involved!!!

tried probiotic drinks but digestive emzymes may be an idea thanks.

Coeliacs was ruled out by biopsy but I had a slight positive result when I did a home test 2 years ago. By slight I mean 2 very faded lines and 2 lines indicated a positive result. I am considering doing it again although it is more constipation I suffer with now and soft stools when I pass the plug! Sorry TMI but hard to explain without

tutu100 hows ds at the mo?

Have come back to update.

Saw consultant today he was very nice. He said that if ds2 is dairy intolerant he thinks it will probably be temporary and he will outgrow it. He said that as Ds2 is doing so well there is no point trying to give him dairy at the moment and to keep him dairy free for 6 months and then we can try him with it again.

He said that there wasn't a definitive test, but the evidence speaks for itself atm. He did get us to take ds2 for some blood tests to check for various allergies (which he thinks will come back negative) and coeliacs.

He did say (as I think you suggested mumbar) that ds2 does have some IBS symptoms which he said were very common in children who have similar problems to what ds2 had when he was a baby. So I got the impression that he thought this was the most likely explanation for ds2's problems.

I did ask if it was possible that these are 2 different problems, I think that's why he is doing the blood tests. He said he will let us know the results of the blood tests and we have a follow up appointment in 6 months.

I'm feeling much happier now as I don't feel like such a nuerotic Mum. Thank you all for your helpful suggestions, they really helped me plan what to ask the consultant and I am sure meant I got my worries across better.

Will now have to wait and see what the blood test results are.

ah glad everything went well.

It was me who mentioned IBS as ds symptoms are so like mine.

Let us know results of blood screens we will support you through all of this if it halps.