To go to A&E

[Mushroo]

I’ll preface this my saying I’ve never been to A&E in my life so I’m absolutely not a habitual user, and very much in the ‘don’t waste resources’ camp.

However, my daughter has developed a swallowing problem. It started around March as coughing when she ate.

We’ve seen the GP who started out saying her chest was fine, it’s just viral.
We’ve seen a private respiratory doctor who thinks it’s asthma, but steroid and inhalers haven’t helped.
Weve seen an NHS paediatrician who did a chest x ray, she had a chest infection which antibiotics cleared up, but the cough when eating has gotten worse.

It’s got to the point this week she can’t eat at all without coughing / vomiting.

We’ve been referred to a speech and language therapist but the waitlist is at least a month.

Im so worried as she can’t eat comfortably and there’s no pathway to help at all for months. I’m worried there’s something in / wrong with her oesophagus, would going to A&e be wrong?

I can’t sit and watch her vomit everyday for at least a month

She’s under a paediatrician, call the paediatrician’s secretary to say that things have escalated and you need an urgent review. They’ll often bring through to Paeds day case.

I can see you’ve now got a GP appt. They may contact the paediatrician’s secretary again anyway. If not call the number on your Paeds letters for the consultant secretary.

Hope you get some answers soon.

Thank you, I’ll do that too

Could it potentially be an allergy to something she is eating?

@Greenegg24 i don’t think so as it happens with literally anything she eats - biscuits, fruit, all meals.

She has an egg allergy so I’m pretty ‘on it’ with allergy symptoms and we’ve been tested for everything else.

I know it's exhausting but I would literally keep a diary of everything. Each meal what did she eat/drink and what (if any) was her reaction, how quickly did she cough, did she vomit etc? It can be useful to track patterns and as a worried Mum all the meals start blurring into one. This way you have actual evidence.

And yes, video any extreme coughing fits and vomiting (though clearly difficult if you are the sole adult at the time as your focus will be helping her).

You might not be a medic, but you know your child, keep calmly advocating for her. It took me 2 years on a different medical issue, but finally I was taken seriously and my son is now on a treatment path for a long term serious condition.
Good luck!

It’s a bit of an outlier but does she have a swollen tummy at all. My daughter was coughing up and throwing up after every meal for months. It turned out to be coeliac disease.

Just to add, we were mislead for quite a while by repeated chest infections/asthma diagnosis too, due to the coughing.

I was also wondering about that.

@ThunderSnacks she does a bit and her bowel movements are on the looser end.

However, weetabix is basically the one food she doesn’t cough with.

Ill ask for the blood test though to be sure, thank you

Why has she been referred to SLT? Gagging/choking and difficulty swallowing can be associated with autism. DS had it from weaning until he was about 2.5, although he also used to choke on saliva and phlegm from birth. We never once left him on his own until he was about 2 as he’d choke in his cot on saliva. When he started solid foods, several times a week he would choke until he went purple (real, silent choking, I have grey hairs). We saw a specialist who said he’d grow out of it, which he did, but he’s still very sensitive around foods that he doesn’t consider ‘safe’. He's now on the ASD diagnostic pathway and is fully expected to get a diagnosis, especially as I’m also diagnosed autistic. Hugs OP, it’s awful.

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

@MrsDoylesSheepTea @Matlivestream i don’t think it’s ARFID, she loves food and will eat absolutely anything (olives, anchovies, edamame beans!) and she wants to eat, it just seems to trigger a cough / gag.

Would that also have been a problem from weaning? Ours has only started in the last few months but I’ll definitely add it the list of possibilities as I don’t want to rule anything out.

In a happy update, we’re seeing the SLT tomorrow at 9am!!! I’m so happy I could literally cry, finally some progress.

@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/

Thank you! I’ll have a read

Good luck. Let us know how you get on.

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.

Go

She has and has got an appointment for tomorrow.

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!

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.

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.

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!

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.

Look at Eosinophilic esophagitis

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.