Advice and help needed

I'm in need of some help , my 18 month old was diagnosed with EoE 12 months old . He under alder hey but no one wants to help or gives us the support we need. He can be fine for 4 weeks and then have 7-10 days of projectile vomit and regurgitate solids . We are top 8 free , he would vomit his feeds up from birth and was put on nutramagin he would continue to react so at 6 months I told his doc I was taking him off it !! I wasn't offered any alternative . He will not have any other formula and reacts to everything even neocate !! He even reacted to a calcium supplement he struggles with GERD to but I am worried he hasn't had more tests to eliminate anything else !! There is so much more but I am trying to find a consultant who actually cares , wants to help as I feel like I'm fighting a war !! He has not kept solids down now for 9 days ! Took him A&E last night and because he had a wet tongue and nappy was told to bring him home !! I'm at a loss and need some help . Is there anyone In the UK that can suggest a good, consultant ? We are willing to do whatever it takes

2 Replies

We had similar with our youngest and we struggled with a diagnosis even and it took 10 years to get that in the end. There are some gastro cons at Alder Hey that are familiar with Egid so maybe your just not seeing the right one. I would suggest joining Fabed as that can be a huge support and if your struggling have you been back and spoken to your Gp?

You are allowed a second opinion if things are getting nowhere so I would chat to your gp and see what help they can suggest.

With our other daughter we luckily got a different Paed Gastro who worked from Wythenshawe. Unfortunately he's left there now but is working in community aswell as privately. So is another option if your struggling. That is Manchester though rather than Liverpool.

Things do get better just hang in there. I know it's tough but you'll get sorted it's just a hard slog sometimes.


my son is under the gastro team at g.o.s.h. dr Lindley hes fabulous .