help..dont know what to do?

[BITCAT]

I have an 8yr old ds who has suffered severe constipation since birth. He has been under a consultant for 5yrs and was refered to a clinic. The clinic have now dismissed him as they have done what they were supposed to and the oroblem seemed solved. He had a follow up appointment with consultant and i was told to ween him off the movicol, which i knew was going to cause problems..but it seems no one wants to listen. I did as was told and now 3mths down the line the problem is returnng and he is again becoming constipated and is getting overflow and having accidents on a daily basis. I have been accussed by Social Services of me being the problem and his last school..also seemed to have it in for me. I am at the end of my tether as noone seems to listen..the consultant has done no medical testing what so ever and i feel as this has been going on for so long..they should be testing him. He will not eat very much at all..refuses all fruit and the only veg he will eat is potatoes..and the veg water i put in the gravy..he is very small for an 8 yr old..pale, and has various social problems, is behind at school..and behaviour can be very difficult. How do i get people to listen and get the testing and assessments done?? The longer this continues the more i fear for his long term health..bowel cancer is a high factor in my family..both my grandparents died from it.

i would look into food intolerances.

it sounds as though he may be self-restricting which is something children with intolerances often do
i would maybe try cutting out dairy which is a common problem food. try no dairy at all for 3-4 weeks and see if there is a difference. if not then gradually re-introduce it and then cut out wheat/gluten and do the same thing.

it won't harm him to go without those things for a few weeks, and if you get a good result then it would be worth it.
if it makes no difference then at least you've ruled another possible cause out

I have already done the cutting out thing...and was told off by docs for it...he gets clogged up by too much milk..so i cut his milk intake..he has toast for brekkie and orange juice and has 1 yogurt a day..this worked for a while and now nothing works. But thank you anyway Thisisyesterday

yeah, you'd need to cut it out entirely to see if it was an intolerance causing the constipation though.

my little cousin had the same issue :(

some GP's are really uninformed when it comes to things like intolerances and allergies sadly

is there any chance of seeing a different doctor and/or consultant?

if not then i would consider paying privately for assessments. both for the constipation and potential behavioural/social issues

i have already considered going private but for a family my size and with our income..it would be impossible. The thing is i fear that if i take steps to rule things out and stop things completely, he wouldnt eat..as he already eats very little. And then id have socail services on at me again and again they have this notion thats its all down to me never mind the fact that i have 3 other children that eat normally and have no major health problems. They have also made comments about my other children as they are all of small build..theyve not taken into account genes at all. Im small always have been..despite eating very well..all my sisters, cousins etc are all petite. They just will not listen.

i really feel for you bitcat :(

I guess I would consider changing GP surgery etc if that might help? perhaps you might get a more sympathetic GP who can do the appropriate referrals?

purely in terms of his behaviour etc, school ought to be able to refer to the community paediatricians... that's another route open to you. Once you see paediatrician you can mention the gut/constipation issues too and they may be able to help?

U need to watch wheat, I am fairly certain that removing most of wheat will solve most of your ds problems. When my ds was little I went along the same route, cut out dairy and got excited as he briefly improved, unfortunately it was not for long. It's only when we removed wheat I was blown away by the improvement, although it took a while to bounce back.
He should be old enough to reason with and you can do it of your own back, as you are unlikely to find a tablet for it.

Or you could try testing him for celiac, he might - or might not - show up in tests. But seriously, wheat today is not the same we ate as children and technology has changed too, sadly to the detriment of many.

When we stopped wheat (for numerous reasons and not just constipation), I just sat down my ds (who was hooked on wheat foods) and explained that was the only thing left to try. I was in tears as there was no guarantee and no easy access to internet then, so it was experimental - but it worked :)

Give him cooked breakfast for a start? You need to give it a good few weeks to get it out of the system, don't expect miracles from day one, as it takes a while to get it out of the system.

BITCAT I was in a similar situation before my DSs were seen by a gastroenterologist. I threatened the PCT via PALS with MP/Press intervention before anyone would take me seriously. Roll on nearly 2 years and all 3 now have food intolerance diagnosis, along with other concerns.
Removing dairy improved all of their symptoms - but not enough (DS1 is dx CMP intolerant, DS2 and 3 lactose intolerant).
Last summer I did a gluten challenge with DS3 - the improvement is immense. Gastroenterologist suggested I try with DS2 as well - again a huge improvement. It is an all or nothing process though. It is immediately apparent if gluten has crept into them!
Follow up the paediatrician route re behaviour as well. Diet and behaviour are very much linked.

May have hit on something with the gluten thing guys..just dawned on me that their dads cousin has celiac disease and on researching symptoms its him to a t. I think im going to take him back to docs and ask for him to be tested and if they wont do it then i may have to try a gluten free diet and see whether it makes a difference. And as most of the stuff he will eat..ie noodles, toast, sausages, sausage rolls etc and spagetti all contain gluten..he will not touch fruit..no matter how i dress it up or veg..ive tried hiding it etc..just claims he doesnt like it. Ive tried saying if u dont eat it then u will be hungry and you wont get anything else and ive tried ignoring it and i was told when he was little he will eat it if he is hungry but he just doesnt..there have been days when he eats barely anything and has made himself sick through lack of food. Its a real worry for me..he is 9 in feb and is only slighty bigger in height than my 6yr dd and she is much bigger build too..his ribs stick out..im so worried about him and the long term damage because this has gone on so long with out any medical tests..just meds thrown at us..that dont work.

nightcat..i get where you are coming from but although his is almost 9..he is very immature and just would not understand..and he would scream and cry. Even when he is told off or has his tv taken away for bad behaviour he screams the house down like im murdering him. My 10yr old dd is not that much older than him and is far more mature. I dont know why docs speak to me like im just stupid..i have 3 other children. I know what to expect and how they should develop, i am almost certain that they and i am missing something but without there backing im lost as to how to sort it.

as I say bitcat, behaviour-wise the school can help. they can refer to the community paediatrician who is the person you need to see for assessment and further referrals.

with regards the wheat. just cut it out.

i think that it's quite common for children to crave the thing that they have an intolerance to, but once you have cut it out you should find that his appetite overall becomes better and he may well eat a lot more variety than he does now.

Supermarkets have a good range of gluten / wheat free things like bread and pasta so you could substitute those - that way he won't feel like he's being completely deprived of the things he does like. They may have a slightly different consistency though.

BITCAT - The gastroenterologist said to me about DS1 and his fructose intolerance (he has an allergic reaction to banana quite markedly) - that it quite often manifests itself as not wanting to eat that type of food. So his reluctance to eat fruit, but is OK with veg, never worried me. My DS would rather starve than eat grapes or strawberries etc, which most toddlers love!
He also asked me what were my favourite fruits - when I told him, he said 'well, at least we know where he gets it from!' So maybe there is more in the genetics than we know!

I too was going to suggest coeliac - blood test for antibodies then biopsy. Change GP if possible and request specific testing for coeliac esp if in family. Made a massive difference to my boys when diagnosed. When our blood test came back positive, we had such a long wait for biopsy that I just took him off gluten anyway. He was so much better. HTH

ive discovered that even if docs wont do the test..i can buy a kit from most chemists to check for several food intolerances. So hopefully i can start to rule things out and believe me im going to be making a fuss with the docs, social services, and the school nurse if it turns out i was right all along..they have failed me and my child. Its awful that we have to do there jobs for them.

wheat/gluten can cause numerous intolerances, tbh I would rather go for drs test and if you want to see him better, just cut down on wheat, coz tests is one thing, but the more wheat he eats the worse it will get
some drs accept diet trial as tests in children are often inconclusive

If it is coeliac, you can't take him off wheat/gluten or it will disappear out of his system and then you will get a false negative result. He needs to stay on his diet until you know for sure that it is coeliac. Usually a blood test is a pretty good indicator - you usually only have antibodies to gluten if you are a coeliac but they like to biopsy as you have to make a big adjustment to your diet for the rest of your life.