Toddler went blue, floppy and unconscious - and nobody seems to be investigating!

[Creamandhoney]

On Sunday, my 19mo DD had eaten an oat bar that she’d never had before (may or may not be relevant). About 30 minutes later she did 3x large vomits, and my husband brought her to me. I thought she looked very pale, and within about 30s she had gone completely floppy, grey / blue around the lips and in and out of consciousness. She was breathing shallowly throughout the whole thing. Obviously we called an ambulance, which arrived within about 5 minutes. Just before the ambulance arrived, she perked up and just went completely back to normal!

We went to A&E and they said they weren’t sure, but it was likely a rare allergy called FPIES which can present this way (although rarely with shock, and normally with profuse vomiting). An ECG was normal. No bloods were done. She was discharged.

On Monday, she was totally normal and completely well.

Yesterday, she began vomiting profusely from waking, not even able to keep down sips of water. Bizarrely, in between vomits she was also completely well and wanting to play with her toys etc. No fever, no diarrhoea, not showing signs of pain etc. We took her back to A&E who gave her an antiemetic (ondansetron) and discharged her again. Again, no bloods / other investigations performed. Diagnosis was a vague “virus”, unclear if related to Sunday or not.

Today she is totally well but refusing to eat and vomiting again. I’m just at a loss. I don’t want to take her back to A&E only to be discharged with no answers again.

my main worry is:

1. What is causing this? I’ve never heard of a stomach bug presenting this way

1. I was reasonably happy with the blue and floppy episode when I thought it was likely to be related to FPIES, but now that they seem to think it’s unrelated should it not be investigated further?! They suggested that we wait and see if it happens again and if it does then they’ll consider investigating.

I just have an awful feeling that there’s something very wrong, but I think I’m not being taken seriously because she is so well in between these things happening.

I would love advice on if I should be taking her back to A&E, if I should be pushing for a referral, and if so to which specialty?

sorry for the essay, I’m just beside myself with worry.

Can you go back to your doctor if you don't want to go back to A&E? I'd follow up. Could it be an absence of some sort?

whatever you decide, book a GP app

A&E deal with what is presented to them

and in this case… a completely healthy and lively toddler

Thanks so much for the replies. I did book a GP appt yesterday (before going back to A&E) and they basically just said to go to A&E if she’s getting dehydrated. I just don’t even know which department to push for a referral to - gastro? Allergy? Cardiology?! I feel so lost and just want some reassurance that DD will get better and there won’t be more blue episodes.

Paediatrics initially?

Speak to your GP and say that you want a paeds consult given the severity of the reaction to what is at the moment an unknown allergen. NICE guidance a

Sorry pressed post too soon. NICE guidance is to refer to a consultant when they've had one or more acute systemic reactions which is normally anaphylactic but to be fair this is a continued reaction so I would push for it.

General paeds is a good idea. Would I be unreasonable to push for an urgent referral? I have a private immunology appointment booked for the end of April (amazingly the soonest available even privately), but not sure if she needs to be seen before then…

"General paeds is a good idea. Would I be unreasonable to push for an urgent referral?"

Who cares? Just do it anyway

A and E deal with accidents or emergencies - a toddler going blue and floppy is a big emergency even if they’ve recovered by time of presentation and I’d want a clear idea of either why it happened or what the ongoing plan is.

This! I don't know what's wrong with your daughter but she lost consciousness and her breathing was affected. It's your job to her help. No one else is going to. Don't worry about being pushy or 'unreasonable'.

they deal with what is presented to them and, in this case, the paramedics could only say “a lively, healthy energetic toddler”

The GP is the one to begin to delve deeper on the basis of what the OP describes

I wish I had filmed the blue episode, but obviously I was too panicked at the time thinking she was dying. I’ll make her an on the day appointment tomorrow with the GP and push for an urgent paeds referral. DD continues to act completely normally today, other than vomiting after milk and refusing any food. She has managed to keep some water down over the past 3 hours though, at least.

I am still quite shocked that the blue episode has just been pretty much ignored by all of the doctors we’ve seen so far. It feels like a massive risk that it could happen again if we have no idea what had caused it.

Did she have a fever when she had the blue episode? My child’s first febrile convulsion presented as blue/floppy with no obvious shaking.

Have you heard of cyanotic breath holding. It's when a usually young toddler turns blue goes floppy and appears to stop breathing for a minute. Have a look and see if it matches what happened with your dd.

My dd had this at about 18 months old - the first time it happened randomly one afternoon - we'd just had lunch at the table and she was on my lap and she just went floppy and blue, her eyes rolled back and she stopped breathing. It was terrifying - she hadn't choked on anything or been sick, there was no obvious cause. We were taken by ambulance and this is what they thought it was - she had several episodes of this but grew out of it by about 4. We did worry about epilepsy and seizures and heart issues etc but she is absolutely fine now aged 6.

You should definitely follow up on this and continue to keep an eye on her - I'd also keep a food diary incase it is allergy related.

Do you have a different hospital near enough by? I would go to a different A&E.

My DD has an allergy and when she first had it it was noticed by a rash that lasted a week. The GP said to try her again 6 months later which I did but this caused vomiting like you've described. The vomiting went on for 5 days with her being very well in between.
I would still push for bloods though due to the going blue/floppy but it could just be a reaction. Hope you get to the bottom of it and little one is okay x

I have a son with FPIES to oats. He is now 13 and he was diagnosed at a time when it was very much unknown. All started when I fed him oat porridge at 6m and he also had a couple of big vomiting episodes and turned blue - I rushed him to an and e who said it was just a bug.

After that, his reactions got worse and worse with each ingestion of oats (unknown to us). On two occasions he had to be rushed into resus, and on one occasion we actually lost him for a minute and they had to do CPR.

PLEASE please be very careful, as with our journey, each time he had oats his symptoms became worse and worse. My suggestion would be if he does react again, take the child to A&E and ask for a bolus IV to rehydrate. If you need to chat please message me.

@Gettingcoldergettingolder no, she hasn’t had a fever through any of it confusingly! Which is what makes me think it can’t be a virus.

@Aria20 thanks for the suggestion- I did wonder if it could be that, but I then can’t explain the vomiting beforehand and she did seem to be breathing during the episode, albeit shallowly.

@CoralGoose im so sorry you went through that. That does sound extremely similar to what’s happening with my daughter. Did your son grow out of his allergy in the end? And did he ever have an episode where he was better for one day and then began vomiting again?

Hi again. First, sorry that I got your DD mixed up and called her a DS! He has probably outgrown it now, but we haven't checked. He has profound autism and we never wanted to put him through the testing in a hospital environment, so we just stayed away from oats.

I cannot remember if we had a situation where he was better for a day and then started vomiting again. But we always had mucousy and bloody nappies after his reaction (and they had a very distinctive smell to them!). I remember once in hospital he was so bad and that evening he started with diarrhoea which was mainly bloody, and it was fresh red blood - that was a very scary situation for us all - as they didn't know it was FPIES then.

I would suggest checking her nappies for mucous after a reaction - usually the following day, this will definitely be a symptom of FPIES.

This requires further investigation - oats could be a red herring, I would advise going to another A&E/ urgent care as soon as possible and pushing for bloods etc. You don't actually know that it was/ wasn't the oats - it's the doctor's job to actually uncover and treat the issue. She clearly isn't totally well if she is refusing to eat and vomiting. It is much better to be safe than sorry and stand up for her - especially as she is a 19 month infant.

@CoralGoose dont worry, many people do that in real life too

Totally understand about not wanting to put your son through a formal test. How carefully do you avoid oats? I only ask because it’s not a reportable allergen (ie one where they have to put “may contain traces of X”) so not sure if this means she can’t have anything prepackaged just in case.

Your experience makes me completely sure that this is FPIES. Just now DD did a loose stool with a very “distinctive” smell. No blood or mucus that I could see, thankfully, but maybe that is to come.

Thank you so much for sharing your experience - I will be very reassured (in an odd way) that the blue and floppy episode can be avoided in future if we just avoid oats!

Sounds like an oat allergy to me, it can present as quite a serious reaction. My daughter has allergies and vomiting is quite a common reaction

I don't think you would gain anything from going to AE. If your daughter is now well they will simply send her straight home, it's not what AE or the acute paediatric take is for.

But it is very reasonable to go to the GP and request a referral to paediatrics, and I think given the seriousness of your concerns, it is reasonable for her to be seen fairly urgent or in a rapid access clinic, possibly. However, this will be at the discretion of the paediatric team receiving the referral, rather than your GP. Unfortunately, how quickly she is seen will depend on the volume of other referrals they are receiving and her prioritisation within that. You don't need to worry about subspecialties as such, at your local hospital general paediatric consultants with a variety of interests work together as a team and they will discuss patients with each other if needed. It might be beneficial to refer specifically to the consultant with an allergy special interest but this might happen anyway when the referral is screened at the paediatric end.

There is some good information on FPIES on Allergy UK. That she recovered spontaneously from the blue episode is encouraging/reassuring, she's likely to do the same again. Babies and toddlers do have horrifying I-thought-they-were-going-to-die blue episodes kind of more often than you would think and many of these are spontaneously resolving one off events, thankfully. Others do recur but in a way which over time can be established as harmless (eg reflex anoxic seizures). Consider an iron supplement. Of course on others occasions going blue is a very serious concerning sign, but become very well/normal again straight afterward is reassuring. That said of course if it happens again you should absolutely call an ambulance again.

I don't know a lot about FPIES so unfortunately this isn't particularly well-informed advice but as it is a form of enterocolitis possibly it could cause a few days of symptoms? You might find that you can join a forum linked to Allergy UK or may even be able to contact them directly for advice if you can't find what you're looking for on their website and get better advice that way.

Best of luck.

Your gp is the right route and they will refer you to the allergy clinic if they believe that is the cause. As inconvenient as it is to manage allergies, it shouldn't be an issue that requires urgent referral to paeds - they will want an allergy screening first as that's your gut feeling (and mums normally do know their child best) it may be possible to get a quicker allergy test privately, your gp often can arrange.