To go to A&E

It's a positive first step - you've narrowed down that mechanically her swallow is working fine - so it's unlikely that she's aspirating or anything like that... now it's just chasing the issue up and down her digestive tract!

And yeah @sapsapsap reflux can cause a load of issues - about 50% of the people I see have some kind of reflux element to what's going on!

Has she been seen by a ENT? my DS had to have his tonsils and adenoids out at 20 months due to them both being seriously enlarged. Everyone missed it until i paid for a private ENT.

He had sleep apnoea, choked on food etc. its caused long term eating issues.

Hi OP. I understand you have previously considered reflux, just wanted to share my personal experience in case relevant.

A few years ago, I started coughing as soon as I ate something. I was fine otherwise. When I ate I got really bad coughing fits, at some point I could barely get through a meal. Sounds quite similar to what your DC is going through. For me it was reflux and some short term medication and a change in diet (including avoiding acidic foods for an initial period) helped over time.

Hope you manage to get to the bottom of this. Best of luck.

Well, you're a step forward, and as your little girl isn't losing weight, hopefully it won't be too long before you do get an answer.

Glad you're getting seen promptly - thought you had a couple of red flags there that would be likely to bump you up a bit if you emphasised them.

As for "why are they sending you to a SLT" - no idea why it originated but (I assume because we do a lot of head and neck anatomically related stuff), the bit that's not in the job title is that we also do dysphagia - well stuff that has an issue in the mouth and pharynx... below that and it's gastro! Not as commonly known about the SLT role and there are constant discussions about the job title (but it's enough of a mouthful already so leave it as it is) but still.

I also recommend looking into Eosinophilic esophagitis and mentioning it to the professionals you see.
my friends little boy didn’t get diagnosed until he was close to 5 with it. They kept fobbing his mum off for a long time.

My daughter developed swallowing problems after whooping cough and haemophilis influenzae just before her 1st birthday. I won’t go into how much we were fobbed off. She was eventually properly assessed by ent. Within a month both of her tonsils and adenoids were removed, just before her 2nd birthday.

Look at Eosinophilic esophagitis

Sounds like she needs to see a gastroenterologist to rule out something physical before looking for a behavioural cause. If you have insurance you could get a private referral relatively quickly. But if she is struggling to eat any meals then I think I may well take her to A&E. It’s not really an emergency, but it may be the fastest way to get her seen by the right person.

Please ask to be tested for achalasia. A friend of mine developed it and became very poorly very quickly. It can occur in children but is rare. However all his symptoms were pretty much identical to your daughters.

I wish you all the best with SLT & finding a way forward!

She is being seen by speech and language tomorrow and while it may be a start and defo useful as they can deal with some swallowing/eating issues that’s not the same as what previous poster suggested.

You would have to go to a children’s hospital for an endoscopy so would need a referral/appointments with relevant teams etc. That wouldn’t directly happen from A&E ( unless an emergency obviously)

i honestly think if she’s not dehydrated or very unwell it’s not going to really get you any further by going to A&E.

It sounds more like an ENT issue or even a gastro one too. i’d be either asking for a referral or going privately if you can afford it, waits may be long for an appointment.

Not a medical professional - but my nephew was just diagnosed with EOE (an autoimmune disease that causes oesophageal inflammation and leads to difficulty eating and vomiting when eating). Sorry if not helpful, but sounded familiar to what you’re describing. I do hope you get some answers soon!

She has and has got an appointment for tomorrow.

Go

That sounds very concerning. Your little girl needs her condition to be thoroughly investigated.

Take her back to the GP and insist she gets an urgent referral to ENT and Gastroenterology. From what you describe, it looks like something is going on with her oesophagus - that needs to be scanned and checked to get to the bottom of what's happening.

Good luck. Let us know how you get on.

@Mushroo @Matlivestream I was thinking more of dysphagia. DS doesn’t have ARFID thank goodness, he’s not that restricted. OP, check out this link and have a read about autism and dysphagia. It can be a very real physical issue. rainbowtherapy.org/dysphagia-and-autism/

Arfid was my first thought as well. OP have a read up about autism and how ARFID presents in young children.