Hiya
It's not so bad having two with EGID now they are improving but it was awful when they were young. I had them both screaming in pain, one vomiting, one with diarrhoea and both up all night. I was exhausted and no one could tell me what was wrong. My husband found it hard too as he couldnt get much sleep and still had to go to work. In his old job he travelled lots too so it was very hard for both of us.

Yes my eldest used to wretch a lot. He projectile vomited after and between feeds and he gagged on anything that wasn't milk. He regularly refused feeds and would get dehydrated. I used to feed him day and night constantly to try to get more back in.

You must be very worried that she is so underweight. Is she in pain? Is she seen regularly? Did she have an endoscopy/biopsy to confirm her EGID?

Everyone I know is seeing Dr Shah and i was told he is the EGID expert in the UK. I haven't heard of your consultant. You can access GOSH dieticians if u see a consultant there and u shouldn't have to wait. We saw them from our 1st referral to Dr Shah. They are much better than our local dietician was as she didnt' understand the condition or the complexities of it. She had our youngest on neocate active but when we saw the GOSH dietician she said some kids with EGID can't tolerate the active due to it's osmology so she put him back on normal neocate, with additional supplements, and his diarrhoea improved.

maybe it is worth getting their input too? YOu can usually get their advice over the phone so won't have to go up there. you can also request they meet you at your consultants clinic next time u have an appointment - this save you having separate appointments - they are always happy to do this.

i think the feeding specialists at GOSH do have a waiting list but i think they give initial assessments quite quickly and then prioritise their cases. the only thing is that sometimes they can't help till a child's condition is under control a bit as a child in pain is unlikely to want to eat even with their intervention. at least if u ask for a referral you'd be on their list and get an initial assessment?

I understand why a playgroup was hard. I barely went with my 2 for first few years as i had one vomiting everywhere, one with diarrhoea and both crying! Took me ages to feel brave enough to go - I think i felt quite lonely for a while, especially as we moved away from my friends and family just after my son was born! I am sure that if any of the mothers look at Orla then they will probably just really feel for you and wonder how to ask you about it.

We live in Wokingham, Berkshire. We used to live in Guildford, Surrey - not too far from kingston.

Are you a stay at home mum or are you working? I was lucky that I've been able to stay at home to look after the boys. I'd worry far to much too much to leave them.

I hope she has a lovely birthday!

Kx