Hello Helen,
Thank you so much for your reply. I hope that you are having an OK week. Orla had a bad flare up this morning and retched so much bile we had to change the sheets on our bed. It knocked her out so much that she slept for 2 hours. Did either of your 2 have this?

Thank you for the PEG advice. I think it's unlikely that Orla will take sufficient calories orally for a while so it's a route I think we will go down at some point soon. It does seem like such a big step though and seems so much more permanant that the NG.

Did either of your 2 have any reactions to the steroids? It's likely we are going to start these in 2 weeks and I am really hoping for some improvement. The antihistamines haven't worked at all. Have either of yours taken Ondansetron which is supposed to stop vomiting? Orla has this and I really don't think it makes much difference.

Anyway, sorry for all the questions. I live in new malden near kingston do you ever meet up with other parents who have children with EGID?
Thanks
Katie