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Chrons Disease?!?!?

(4 Posts)
RubysMummy0 Wed 26-Sep-12 15:27:25

Hi, I have joined up today as I am desperate for some advice, we have a 14 month old daughter who suffers terrible with her tummy. She has suffered since she was 2 weeks old only had a small number of solid poos and gets the most horrendous stomach aches ever and can scream for hours none stop. I fought for tests and finally at 8 months old she was diagnosed lactose intolerant. She still does not have solid poos even though she is in proper food now and she still gets severe pains in her tummy every now and then. She also sleeps 14 hours or more every night, I'm not complaining as i love my sleep but it just seems a little too much as well as a 2 hour nap in the afternoon. She is so active and happy the rest of the time, actually people always comment and say she is the happiest baby they've seen. I just know its more than the lactose intolerance messing with her tummy. But no one seems to listen, please if you have any advice I need to hear it, can't bare to see her in pain any more.

Thanks You so much in advance
RubysMummy0 x

megandraper Wed 26-Sep-12 15:34:07

Have you had a test for coeliac disease? Very common to have lactose intolerance along with coeliac. You can ask your GP for a blood test (and insist) - they will probably refer you to a hospital for it as your DD is so young. Coeliac can cause bowel problems and lethargy (hence long sleeps). Also ask for a full blood count test - checking iron levels etc. (anaemia v. common with coeliac).

Only problem is that the coeliac blood test is not completely reliable, especially in very young children. So, even if it is negative, insist on being referred to a paediatric gastroenterologist, who can consider all the options.
(I think you mean Crohn's disease in your headline btw)

Good luck. I have one diagnosed coeliac DS, and one not-yet-diagnosed-but-probably-coeliac DS, and one DD whom we don't know about yet. It took a long time to get DS1's diagnosis, and I agree - when you know something more is wrong, it can take a long time to get someone to listen to you.

RubysMummy0 Wed 26-Sep-12 15:41:30

Yes sorry I did mean that, silly me. She has had that many tests I have not got a clue half of what she has been tested for. The only positive result we have had is lactose intolerance. She has had many other health issues, she stopped breathing 3 times at 2 weeks old, she's had 2 lumber punctures done as well as cystic fibrosis scare. And still we have had no answers

I just feel because this is my first daughter and I am only 20 they think I'm over reacting but even my partner (daughters dad) agrees there's more too it.

Thanks so much I will definitely be demanding these test and fingers crossed we get to the bottom of it

megandraper Mon 01-Oct-12 14:29:12

Good luck Rubys. I would suggest that at your next appointment, you ask your doctor to go through all the tests that your DD has had, and what the results were. Take notes, so that you can remember.

My mum was 22 when she had me (first child) and it took her many, many years of fighting the 'young over-anxious mum' label before she finally (in my teens) got a diagnosis for me. She did a good job. Hope it is much quicker for you.

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