Hi Katie
I am so sorry to hear what an awful time you've had. I'm sorry to say that most of us families with children with EGID had a long hard fight to diagnosis too. It's awful.

I have 2 boys with EGID and it took me 4 years to get to the bottom of what was making my eldest so ill. LIke you, we saw lots of consultants, had lots of tests, i used to cry my eyes out to doctors and still got nowhere. My youngest also has it and it wasn't till he was 2 that we finally got a diagnosis for him.

Anyway, last year we finally got sent to GOSH and they were able to help us and things have been improving a lot over the last year.

our eldest was like your daughter - projecile vomiting and crying in pain all the time. it was horrendous. He developed a food aversion so wouldn't eat or drink unless it was milk. This has improved a lot over the last few years - since we've been seeing hte Feeding Specialists at Great Ormond Street - have you been referred to them yet? They can help with food aversions and phobias.

OUr youngest is going through a fear of eating stage and it's really upsetting.

I think most kids end up having a course of steroids at some point. I am sure you are very worried about this. what other medication is she on? is she on a special formula now? we use neocate for our youngest.

There is another mum on Parentsown who's son has a gastronomy and she may be able to advise you - i will email her about your posting and see if she can offer you any advice.

re: the hereditary thing, a lot of families have more than 1 child with it and I asked Dr Shah at G.O.S.H last week about this and he said there is some hereditary factor and that you are more likely to have another child with it if you have a boy as they are more susceptible. He also said that second children can have it worse but this isn't the case for all families as some have a child with EGID then a healthy child.

Have you asked your consultant about the hereditary link?

I really hope things improve for you and your little one soon,

Kx