Food getting stuck, swallowing, eosinophilic oesophagitis

[User237845]

Hello, I was on a helpful thread a few months back but didn't want to keep resurrecting the OP's thread. I hope you don't mind me tagging a few names here. My son was awaiting an endoscopy when I posted on @namechangeroony1 's / @namechangerooney1 's thread.

He has had it and we have had the results of the biopsies back: He has severe EOE and he's been given quite a huge drug regime to combat it. It feels a bit overwhelming as he's had lots of other issues including gastro in his life and now this. I wonder if any of the posters who posted on namechangeroony1's thread might have any words of wisdom or advice?

In particular I'm worried about the side effects of the huge doses of drugs he's been given (omeprazole - which he was on for 14 years but mainly at a low dose) and a dissolvable steroid.

If anyone would rather talk by pm, that's fine as I realise how identifying this is!
@MrsAvocet @Stormchaser1502 Hope it's ok to tag.

Any help is welcome. I think the plan is to do another scope in a few months time and maybe an exclusion diet which for my son, is more complicated than the average child.

Hi @User237845 I'm sorry to hear this, yet at the same time, pleased you have a diagnosis. I remember feeling very conflicted - both extremely anxious about what this diagnosis was going to mean and relieved that we finally knew what the problem was (and that I wasn't in fact crazy!)
We are away on holiday at the moment so I dont have much time, but I will PM you in the next few days once we are home.

That's so kind, @MrsAvocet , I really appreciate it. I felt a bit rude summoning you out of the ether! Have a lovely holiday and I'll wait to hear from you once you have more time. Many thanks.

No problem @User237845 I might be a bit out of date as my DS was diagnosed over a decade ago when EOE was a new diagnosis in this country and almost all the info was from the US but more than happy to share our experiences. Travelling home tonight so once I've caught up on a bit of sleep I will message you properly.

Thanks, @MrsAvocet . Any info or really experiences (I suppose I'm hoping it gets better and we can lay off the drugs a bit) would help. Also whether there were bad side effects and how you managed them.