Hi, I am the mum of a little girl called Orla who is 1 next week. We received the news this week that Orla has ED which has been a lot to take in as we thought we have been dealing with severe reflux up until now.
It's been a hellish year with test after test with frustratingly no results until now. Orla vomits all the time, she gags and retches bright yellow stomach bile and has had an NG tube since birth - she is very underweight. She won't eat a thing orally and is on all the reflux meds plus various anti-histamines. Nothing is really working and this week she has been worse than ever.
We are seeing Dr Elawad at GOSH and have another appointment in 3 weeks where I think he will start her on steroids. We are also facing the decision on whether or not to go for the gastrostomy. Any thoughts/advice/experience on that would be appreciated.
It's such a horrible condition isn't it. Do you know if it's hereditry? We would love another child but I am terrified of this happening again.
Look forward to hearing from some of you who are also suffering with this. Hope we can help and support each other.
katie
Post to Twitter
Read about users experience of tests and operations their children have had. Or add your own. 
Going out? Search places our users have reviewed. Or add your own review.
Find "free from" recipes that are suitable for your child or add your own "free from" recipe
Look for or recommend a specialist in your childs condition with our find a specialist tool
Recent comments