Neck pain and EoE

[MuireannOg]

DS has recently been diagnosed with Eosinophilic Oesophagitis (EoE). It’s not been an easy road by any means we have been in and out of hospital a lot recently. Last being 5 days ago and that was his 4th admission we are really struggling to manage this. We had open access but they stopped it they told us he didn’t need it. I feel like we are stuck and struggling.

his symptoms have never been “the normal” He’s been having this back of his neck pain and feeling or being sick again. He’s on lots of tablets to try and stop that but sometimes it’s not working he’s exhausted from it all

I'm sorry you're going through this with your son. How old is he? My son has EoE - diagnosed when he was 14. I presume your son has had an endoscopy? Is he on a PPI and a steroid? How long has he been on them for? Is there a plan to do an exclusion diet with him? Sorry for so many questions.

My son's EoE was very responsive to the drugs but I feel like he has just been left on large doses of powerful drugs with no plan to reduce them. There is an EoE network which has some helpful films on youtube ]] and facebook also has a good support group where people are quite good at answering questions.

I hope things get easier for you.

This isn’t under control, and you’re right to feel stuck.Push the doctors for a proper review, his treatment likely needs changing.
If they brush you off again, get a second opinion quickly.

@OrangeWallabythank you so much! He is 10. Yes he’s had 3 endoscopy OGDs since December. He’s on high dose PPI and started steroids for 12 weeks 2 weeks ago. We are doing a food diary, removed gluten and have him on a soft food diet. He’s also on Ondansatron to try help with his nausea and vomiting.

thank you I’ll have a look at both Facebook and YouTube I had no idea there was these groups.

he has so many symptoms. How is your son doing? If he had nausea and vomiting how to you manage this x

Hi @MuireannOg , sorry for delayed response, I've only just seen this. My son is ticking along I think. He is in the first year of uni so whilst things are sort of ok, I'm trying not to instigate any changes such as food exclusion diets. But I am worried about the long term use of PPIs at such a high level. The steroid melts in his throat and is supposed not to be absorbed systemically so I'm trying not to worry so much about that. My son is now in the adult system which is much more laissez-faire than the paediatric bit and they don't really do or suggest much, just 'monitor'.

My son hasn't had nausea and vomiting as part of EoE I don't think, though he has a long medical history with other gastro conditions, and he's had a lot of vomiting over the years and food refusal with that. We were completely unaware of the EoE so it's possible treatment of the other stuff masked that for some years.

It sounds very tough for your son but also sounds like the hospital is being proactive if he's had 3 endoscopies since December. I very much hope one of the food exclusions works for him if, as it sounds like, maybe the drugs aren't as effective. (I remember one doctor telling me my son was lucky, as the drugs don't work for everyone, but they seem to be very effective for him.) Feel free to ask any more questions or DM if you'd rather but I don't feel very knowledgeable about it generally. Also feel the medical profession aren't that on top of the actual causes.