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5 year old has ?IBD. help?

Hello, I'm new here.
My 5 year old girl has been suffering on and off for years.
she was diagnosed primary lactose intolerant at around 1month old.
Has developed other minor intolerances.
She has had tummy pain for as long as I can remember,
She goes through periods of increased pain, nausea and messy, stinky poos.
Her latest episode lasted months and she was passing mainly mucas and blood.
She had also lost weight, was very tired and moody.
She's seeing gastro paeds. Had blood tests, all ok
Stool samples ok except her stool calprotectin was 200. (hospital said this was fine!!???)
The hospital has not done anything more, asked for a repeat stool specimen in 6 months time...
She seems to be in some form of remission atm. Putting on weight with good colouring and fairly normal stools.
My 2 year old has the same intolerances so I'm sure we'll be going down the same path soon enough! Our food bills are colossal! ;-)
I guess I'm just looking for some guidance and support. The hospital makes me feel like I have munchausens so I don't feel comfortable sharing concerns with them..
 

nogutsnoglory

Moderator
Sorry to hear about your little girl suffering. Her symptoms could be that of IBD but those symptoms can also be from many other issues. If you mentioned intestinal inflammation that would be a strong distinction. IBD can be hard to diagnose and I'm sure the hospital doesn't want to subject a young girl to any unnecessary exams or medications if possible and might be acting a little more conservatively. The good news is she is gaining weight and feeling better, so just keep an eye out.
 
Thankyou nogutsnoglory. When she's having a 'flare up' she has signs of inflammation, she will spend ages on the toilet, often rushing to the loo but not passing anything and her stool calprotectin was 200 whilst in a 'remission'. She has cousins with Crohn's and they all had normal results until biopsies showed it. It is fab that she's doing well but she's not eating fruit or sweets atm and I'm sure that could be a link...
I love your username :)
 
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