What is wrong with my DD? Help!

[mumof23188]

My DD 10 has had ongoing stomach pain for 16 months now. It started as an intermittent pain happening every 6-8 weeks but fast forward to now it’s daily and gets severe on occasions. She has been admitted twice with suspected appendicitis as the pain gets that bad she can’t move. It’s a sharp, burning pain and she says it’s like someone is squeezing her. DD is unable to bend down and has to squat down to pick things up, she’s pale, in pain when eating/drinking and can’t stand for long periods due to the pain. She’s always clutching her stomach. DD has very very loose stools sometimes up to 5 times per day snd at other times explosive diarrhoea. It’s rare for her to have a normal stool these days.

I have been back and forth to GP and I am at the end of my tether now because i can’t do anything to help her. It’s breaking my heart! She’s missed so much school. DD is taking omeprazole and mebeverine both of which do nothing. She has been referred to gastro paediatrician but the wait is up to a year. Im going to call GP tomorrow to get it expedited because how can she carry on like this? Recent blood tests have come back and are classed as normal. Anyone been through similar? Im worried sick!

I was like that as a child - it was coeliac for me. Poor girl, I’ll never forget the pains

Totally second that with above poster.

Oops sorry - cross post. I see calprotectin has been done. That's only a very mildly elevated result so reassuring in some ways. However, I stand by the need for further investigation.

Also, on blood tests, even though I have moderate ulcerative colitis and am quite unwell with it at the moment, all my blood tests are coming back in normal ranges which is reassuring for me, but you must make sure you're not dismissed just because blood results look ok. My CRP is very resistant and even when my colitis was in a 'severe ' flare confirmed by colonoscopy it wasn't reflected in my bloods.

You make a lot of sense Ineednewshoes (great name by the way) Hope your flare ends for you soon and you heal well.

Calprotectin isn't a very specific test, though. It indicates inflammation but it can't correlate the calprotectin level with the seriousness of the disorder. My calprotectin was off the scale (>6000) but I had proctitis, which my Consultant said is the best you can hope for with IBD. Someone with lower levels of FC could have Crohn's, which is more serious.

@Lougle that's what consultant said to me as my son's was over 2,000 with ulcerated colitis and he said that doesn't indicate the severity (his is mild UC)

@SunniG as a mum who's son got diognosed a year ago at 12 with ulcerated colitis i love reading your DD success story as majority of things read on the internet are pretty depressing about IBD's! I hope she continues to thrive.

OP I wouid absolutely be making some complaint as suggested above.

Has her stool test come back yet?

Hello everyone,

Thank you to everyone who has taken the time to post.
The GP finally said he will speak to gastro to get her seen quicker. So just waiting on that really, DD had another coeliac test done, as the last one was over a year ago when her symptoms first started. Not holding out on that showing anything. GP also prescribed buscopan which is helping to take the edge of the pains. DD is still barely eating. Such a worry.

I'm glad the GP is trying to move things forward a bit. It sounds horrible for her, poor thing.

Hi OP

I really feel for you esp as she isn't eating.

Did her latest stool test come back?

Hi @mumof23188, can I ask how your Dd is doing, did you eventually get some answers or see improvement? My Dd is going through exactly the same at the moment we have had two months of absolute torture and anxiety at home