Anaphylactic Shock - 3 year old

[Worriedmum5432]

Hello,

My DS went in to anaphylactic shock last night for the first time. It all happened very quickly and he was unresponsive about 10/15 minutes after he said he was itchy. I was at a hotel and by sheer luck there were paramedics there dealing with another job who helped. They gave him 5 shots of adrenaline, medicine to help with the wheezing and oxygen.

I was calling 999 as I spotted the paramedics and they spoke directly with each other. The paramedics requested another ambulance as it was a category 1 call.

What is terrifying me is that second ambulance took 25 minutes to get there. I don’t know what would have happened to my son if medical help had taken that long. He’d already had multiple shots of adrenaline by that point and was floppy, swollen and unresponsive.

I have no idea what caused the reaction either! He hadn’t eaten anything different.

Does anyone have experience with this and what happens next? He’s been admitted to hospital but I’m waiting to speak to another doctor this morning.

I’m absolutely terrified about that he can eat and if it will happen again.

Did anyone else get allergy testing?

Any help or advice would be greatly appreciated.

Sorry for the rambling!

That sounds terrifying. Hopefully the doctors will be able to advise you on the next steps. I'd hope you will be given an epipen in case it happens again. I hope your DC is recovering well.

I'm so sorry this happened, absolutely terrifying. He will have allergy testing done, probably via blood tests. Hopefully they will do this as an urgent case. I imagine they will give you epi pens in the mean time, push for them from your GP and ask for training. The Natasha Allergy foundation us great for advice. What had he eaten that day? Any medications etc? Write everything down including all ingredients if you can to give the drs and yourselves an idea of what to avoid until allergy testing results come back

Ds1 (16) went into anaphylaxis just before Christmas. This happened in the middle of his normal breakfast and presented as a typical food reaction, although we've no idea what he was actually reacting to.

We were discharged from the hospital with epipens and an urgent referral for allergy testing. Before we left the hospital I made sure he'd eaten a wide range of foods (wheat, dairy, egg, soya) and then had a nerve racking week reintroducing others worried that something would trigger a second reaction (he used to have dairy and nut allergies as a child but is fine with them now) but -to date- that has never happened and allergy testing has shown nothing but a big reaction to grass pollen which we knew about already (hayfever). They are doing some further tests for rarer types of allergy but so far so good.

Currently you are in the worst bit as its all new terrifying and unknown. When you get a minute make detailed notes about the hours running up to the attack - what he ate, what you did, where you went as an side memoir for later appointments. Was your ds particularly active just before the attack, was he eating? Had you just arrived in the hotel or already been staying there?

Oh and have a look at the anaphylaxis UK website for info and support.

Hopefully the delay was partly as there were paramedics there rather than just you trying to deal with jt.

I had one about 6 years ago and I've no idea what caused it. As I was much better by the time I got to hospital, they never investigated it (though I was an adult not a small child) so even now I avoid the thing I think triggered it but don't know for certain.

That's such a scary experience, especially with the wait for the ambulance. Thank goodness there were other paramedics there already. Do ask at the allergy appointment if there is anyone you can talk through your experience with, perhaps an allergy nurse, as I think it would definitely help you process all that has happened.

My advice is make a note of everything your daughter ate that day, and at what time, in the form of a food diary. Try and make a note of the brand names too so you can look at the individual ingredients. Also consider if there were any environmental allergens around, could it have been a wasp sting, or chemical or anything? Try and write down the timings of everything as you might find it useful when asked at your appointment.

In terms of what to expect at your allergy clinic appointment, they usually ask what happened & try and work out the cause, but they can't test for hundreds of things, so you have to try and narrow down what the culprit might have been. They will probably do skin prick tests with the most likely causes, and possibly a blood test too. I would ask for epipens to be prescribed and they will train you how to use them/what to do if your child has another reaction.

In the mean time while you wait for your appointment you can ask your GP to prescribe antihistamines and epipens so you have something should this happen again.

Have a look at the list of the 14 most common foods to be allergic to - did your daughter have any of these just before the reaction?

There are a couple of good charities that can offer support and information - The Anaphylaxis Campaign, Natasha Allergy Research Foundation, & Allergy UK.

I hope you get the appointment soon and you also get some support for what happened, anaphylaxis is so scary, I'm so sorry this happened to you and your daughter.

That must have been truly terrifying @Worriedmum5432

Just wanted to give you the link to the Anaphylaxis website mentioned by a pp

This shouldn't happen but DO NOT leave hospital without 2 epipens, plus a trainer pen so you can practice using one. Literally refuse. They can prescribe from the hospital pharmacy, no faffing around w the gp.

I’m sorry this happened. It’s a horrific experience at the time and then you have to deal with the aftermath of trying feed them and every meal time meaning huge anxiety for you all.

You say you were at a hotel - did DS eat anything cooked by them? If so you need them to list everything including oils and sauces, to check for the top allergens but also check if there were any vegan/plant based ingredients that might have included pea protein, chickpea (legumes) or maybe soy/almond milks, things like that.

Environmentally, I wonder if there were peanuts being served, could there have been air freshener in the air? My DD reacts to small amounts of flour dust in the air so floury dinner rolls and dough/pizza being made nearby is an issue. Also note what you had eaten that could have transferred through kissing/handling him. We had to be so careful when eating the smallest amounts of things when DD was a baby and had to wash hands and mouth afterwards or she would react.

I second Anaphylaxis Campaign, Allergy UK and Natasha’s Foundation for information and support. There’s also a great community of allergy mums on IG that you’ll find through comments on the Natasha’s Foundation IG.

I'm so sorry you and your DS had to go through that. I don't have any advice, but couldn't just read and run 💐

I had a severe reaction to medication.
The odd thing was I didn't have the awful reaction until about two hours after I consumed the medication. Very weird.
Fortunately it happened in a shopping centre and I went into a pharmacy immediately and the pharmacist looked after me.
So weird the tablets were in my system for 2 hours before I had the severe reaction.
It happened twice. The second time I had antihistamines at the ready.
Again two hours approximately after consumption before I reacted.

You can also get delayed reactions to food. It happens if you are allergic to the broken down proteins from the allergen rather than the whole proteins. I have this reaction with some shellfish.

Thank you so much for all your useful advice. I will check out those links and make a detailed list of what he had that day. I really appreciate the help as my mind is all over the place.

The Natasha story really sticks in my head as it was such a heartbreaking thing to happen and now I’m terrified about my DS’s future too.

He did have a small amount of pineapple juice about 1 hour before it happened. I don’t think he’s had that before but there’s obviously a delay in trying it and then getting ill. Can that happen? Isn’t it usually more instant?

Im just so scared to feed him now! He’s had some yoghurt for breakfast this morning but we are still in hospital so at least I know help is right here.

@Porcupineintherough ah that’s really interesting to know thank you! It could have been the pineapple juice then potentially

I'm sorry it's so scary. It is always scary but it will feel more manageable going forward. Try him on a range if foods in hospital-bread, cheese, milk, his usual juice. Then you've got a safe base of foods going forward which you can add to, 1 thing at a time.

I have no idea what caused the reaction either! He hadn’t eaten anything different.

it doesn't have to be something different.

i hope you get to the bottom of what it was and that your DS makes a swift recovery.

If he doesn't usually have pineapple then that's certainly one to avoid until you get testing. But it's also possible (though unusual) to develop an allergy to something you eat every day.

If you think it may be pineapple then take some with you when you go for allergy testing (for skin prick tests) as they may not have any. They'll have the big 14 (14 most common allergens).

It doesn't have to be anything new at all because it's one or two exposures that upsets the body and then the next one is the one that causes the reaction.

I know you're scared to let him eat but actually this is the place to do that. Try and get him to eat a variety of things so that you don't have to do that at home. The ward is the safe place

Thanks all. I’ve just been down to the shops and he’s eaten a few different things and so far so good.

He’s had itchy hands are eating apples before so I’m going to stay clear of them to be on the safe side.

The doctor told us there’s a year wait to see the allergy team! That such seems utterly ridiculous. I know many allergies can be unpleasant (I have some myself) but this could be life or death. Surely they must prioritise?

Im waiting for two epi pens now before we can go home.

Our appointment was 1 month after the anaphylaxis so yes I'd hope they'd shove you up the pile.

In the meantime get them to show you how to run a mini food challenge yourself to help w safe reintroduction of foods.

I've had a quick Google and apparently allergy to pineapple is a thing. I have a colleague whose allergic to apples. Pineapple is related to jackfruit so that might be another one to be cautious of til he can be tested.

Would getting seen privately be an option? If so make sure you go to a reputable consultant (Google the private practises of the consultants at your hospital for example). Please don't fall for any of the hair analysis or similar woo allergy clinics. If you say what area of the country you live in someone here might have a recommendation if it helps. I know there are long NHS waits with our hospital at the moment so a year wouldn't surprise me.

I know it seems overwhelming and daunting, and you can't help think of stories in the news you've read etc, but I promise you will feel better soon and get through the other side of this. Just take time & know once you have all the facts etc you'll feel a lot more in control. You'll have ups and downs with your feelings over the next while but it really does get easier to manage.

If it is pineapple then that would be good news as could be fairly easy to avoid. Have confidence that you'll get the info you need & that you are setting an example to your child how to navigate and handle this new situation, then make sure you find a friend for a very large glass of wine once you get back from the hospital. Best of luck with everything, sounds like you are a wonderful mum who did all the right things, your child is so lucky to have you to support them.

It could be nearby flowers, fur (I’m allergic to one type of fur, and have a Epi -pen, we also have a dog and cat) it could be detergent, hand wash, sun cream, latex, a number of things other than food, I hope you find out, very frightening for you.

Hello, thank you to everyone for the supportive messages. It was really helpful being able to about to 'talk' to people about it.

I'm back to update in case anyone searches similar in the future as I couldn't find many threads on it.

We ended up getting private blood tests a few days later which confirmed allergies to a few different things but sesame being the most likely cause of the anaphylaxis.

I asked my GP to refer to a different NHS hospital to the one he was taken to that night and their waitlist was 6 weeks (as classed as urgent). The skin prick test there also resulted in a strong reaction to sesame.

I feel better now I know what to avoid giving to him but it's scary thinking how everyday things (like attending a bbq, going on holiday, eating school dinners etc...) will be much more tricky.

Glad you got some answers. I won't lie - it is scary and that doesn't change. But you do, to a certain extent, get used to it and if you know what to avoid you can start the process of teaching him to look after himself. And, as sesame is one of the "big" allergens it will be labelled everywhere.