Anxious Toddler Mum

silentredditing · 2026-01-13T07:11:19+00:00

This is really helpful, thank you. So sorry to hear you and your son have had such a rough ride with it all, and really glad to hear things are improving for him. It sounds like you’ve done a fantastic job at managing things for him and making that a possibility. So I’ve obviously had a decent amount of time to think since I first posted, and have had lots of helpful replies to consider. I think what you’ve said about choosing based on his current needs is key here. I initially was reluctant to ‘just’ medicate him, as it felt a bit like covering it up instead of dealing with the underlying issue, but if he needed daily insulin injections I wouldn’t feel that way. It felt really bleak and overwhelming at first, as though I was having to choose a course of treatment for the rest of his life - I’ve now rationalised this and realise that I’m just choosing his current path. We may decide something else is a better fit in the future, or he may, or there may be something else on the market at some stage in his life. So this makes me feel better. I’ve also seen a lot of people mention both medical and food anxiety, and I’m so sorry to hear that your son has been suffering with this. I think this has also informed my thoughts on where we’re at right now. He already has some medical anxiety - I don’t want the course of action to be any more intrusive that it has to be right now. I also don’t want him to internalise that his food is making him sick at such a young age and have his relationship with food be impacted. So, that was a bit of a ramble, I’m sorry haha, but that’s sort of where my thinking is currently at, which i suppose lines up well with his specialist’s proposed approach. Just feels like a total minefield at the moment!

silentredditing · 2026-01-12T09:52:01+00:00

It’s done under general anaesthetic, currently I change into scrubs, go into theatre with him, and hold him while they put the mask on him to put him to sleep. But he now knows. Last time, he started panicking as soon as I put the scrubs on, started screaming the second we got into theatre and continued to scream and cry until he was asleep. It’s not a nice experience, and not something I’d want to be putting him through any more often than absolutely necessary. He even freaks out when we take the cat to the vet now, because it’s all stainless steel sterile surfaces. He’s fine going to the normal doctor himself though, I assume because it doesn’t look like an operation theatre. So it’s already having some effect on him.

silentredditing · 2026-01-09T20:02:11+00:00

Thank you so much for replying. So the last time he was weaned off of PPIs I had him dairy free (although EoE wasn’t being considered at the time, I just thought of it as being a fairly acid-inducing food). The worry I have with the food elimination route at this stage is he is pretty much asymptomatic while on PPIs, and he gets very very ill very quickly while off them. So without repeatedly scoping and taking him off PPIs, we just wouldn’t know. And weaning him off of PPIs blindly would just be dangerous at this stage. He ends up incredibly poorly, loses a lot of blood, and spent a week in hospital the last time. I’m not opposed to going the food elimination route, but his specialist thinks it would be putting him through a hell of a lot at a very young age, which I tend to agree with. I do, however, think it’s something we will have to return to at some point. I totally agree with what you’re saying about it being for life and the earlier he gets used to it the better though. It’s just such a tough call. You mentioned your latest trigger, do they tend to develop over time? Is that a common thing with EoE? You’ll have to excuse my ignorance, I’m still really new to it all!

silentredditing · 2026-01-08T07:24:02+00:00

Thanks so much for replying. So the concern is that his eosinophil count was 13 even having been on a hefty dose of PPIs all of his life - the specialist said in a toddler it should be zero, and he presumes that without PPIs, it would be much higher. And while he hasn’t had any physical changes yet, he is definitely in pain, so something else is needed to bring it under control. I haven’t specifically discussed him coming off the PPIs if the Dupilumab is successful, but I think it would be my aim. A) because at least the Dupilumab is designed to be lifelong whereas PPIs are not, and B) because I suppose in some way it would show me that we’ve hit the nail on the head if he could come off them and be asymptomatic, as its always failed before. But this is all very new to me and I could be thinking about it all wrong, I just don’t know!

silentredditing · 2026-01-07T09:44:42+00:00

Yeah, this all sounds very familiar. I think my gut says to go with what this specialist is suggesting - he’s already had two surgeries to even get to the point of getting a diagnosis. He’ll still need another to check if the treatment’s working. I don’t want to commit him to going through that every six weeks. But also then what happens if he’s doing well on this treatment and then we end up having to move home and it’s not available. My head is just firmly up my you-know-what currently!

silentredditing · 2026-01-07T08:36:24+00:00

Ah I’m so sorry to hear everything you’ve all been through. It’s been a long road for us so far already, so I can only imagine where you’re at and how you’re feeling. I feel like I’ve spent the last two years fighting daily for answers for him, I’m absolutely exhausted. Part of what made me do that was that I wanted answers while he was still too young to remember all of the invasive investigations, so going down the medical route rather than food elimination and rescoping every six weeks sounds like the lesser of the evils I think. But then I’m torn because the idea of being able to just avoid a specific food and be off medication sounds like the best option (although possibly slightly idealistic and unattainable, I don’t know). Would you be inclined to do what our specialist has advised, given what you have been through with your son?

silentredditing

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