This was anaphylaxis wasn’t it? Nuts.

[Mytortoiseisbetter]

Ds2 (16) has always had hay fever/throat-clearing type symptoms ans the odd rash after food but last night something more serious happened.

he ate 4 Brazil nuts and a few minutes later his throat felt weird and his breathing became noisy. His eyes were red.

We happen to have a neighbour who is a local GP and he kindly came over. He got ds2 to take antihistamine. Then he got an inhaler, then a steroid inhaler. The throat cleared a bit and he sent ds2 to bed saying he should go to hospital if it didn’t settle. He said “we’d know by now” if it was going to be severe (he stayed with us for an hour)

I slept in the same room as ds2. Shortly after going to bed he got very agitated saying his heart felt like it was on fire. I thought it was a panic attack but then he threw up and after that it all subsided. He says his throat still feels a bit “cottony”.

I had assumed the vomiting was a response to the inhaler but Google tells me that vomiting and heart issues are actually part of anaphylaxis especially if food-related.

this morning I obviously called our own GP who ordered a RAST(?) test but that’s not till next Friday. She said normally you call 999 with any breathing issues.

I realised I’d failed to tel, her about the heart and vomiting to called back and gave a message to the receptionist.

dh is in complete denial saying “it could be nothing”.

it’s not though is it?

my neighbour has shown us where their epipen is (it went out of date in 2020).

Not sure what I’m really asking here. I guess a handhold? My older son had a life threatening emergency just a month ago requiring neurosurgery and I’m only just recovering from that!

we've got a prescription for an auto-injector, yeah.

Avoiding all nuts. It's a bit of a pain but I can see we would get used to it.

DS2's passport has arrived. DS1 claims to be feeling better after op (a whole other story).

feeling more hopeful.

That is good news.

Were you shown how to use it and did you get given a trainer pen? If not there are good videos on eg epipen site and you can order a trainer pen, and register his so you get a reminder when they need replacing.

Advice which is not yet 'official' but is being shared by allergy advocacy groups and some allergy clinics is that if you need to use the second pen use it in the other thigh.

@Mytortoiseisbetter great news! A little bit of armour in this new battlefield you/ we are in.

Thanks
the idea of pranks terrifies us….
at least he’s 16 not 11….but still…..

My username is so ironic. My tortoise was I’ll and people got upset it wasn’t going to the right sort of specialist vet……whilst our childrens lives are at risk…both my kids within 2 months dammit

I have cold urticaria and a lot of other rare / weird allergies. It can be very isolating. I think the most important thing for anyone newly diagnosed with an allergy is to err on the side of calling 999 if concerned - it's much, much better for it to turn out to be less serious than to try and tough it out and have a bad outcome.

Really sorry that you've been going through so much scary stuff, OP!

Thanks!
son 1 sounds happy with vision restored. His event was more extreme but hopefully a one-off. Just need to get past post op headaches. He likes telling the girls the story!

but the allergy thing could have long lasting subtle impact.

grrrrrrrrrrrrrrrrrrrrrrrrrr!

You will get a prescription for an epipen from the consultant running the tests if it is considered necessary.

I know it is difficult to realise about peanut allergies but in the UK, it is massively easy to avoid nuts so the epipen may end up being something you carry in your bag for years on end without using it 💐

I like that thought helmet :)
also the advice to wear helmets :)

Quick update: gp prescribed auto-injector x2
ds2 being pretty good re carrying one (I know, it should be two)
he went out last night. Downplayed it with peers.
had blood test today
having skin prick tests privately on 1st. That doc called and said Brazil nut allergy does tend to cause throat issues :(
house now nut free - bye bye Dorset Cereals!

a massive thank you to al, those who campaigned for labelling!

a bit unsure re sesame seeds... not buying for now
life goes on

Jolly well done. You know more now and knowledge is power. :)

very best of luck. x

:)
I dunno, I preferred ignorance :)

We're moving this thread over to our Allergies & Intolerances topic at the OP's request.

Sending good wishes to you and your son, OP. We're glad you've got some answers by now.

I can tell you about some of it as I developed a wasp sting allergy and had an anaphylactic reaction - hives, swelling including throat and the most awful feeling of doom - that something was very wrong. We called the ambulance.
They told me to phone my GP, tell them what had happened, ask them to prescribe epi pens and refer me to the allergy clinic. Then I had a skin test and blood tests to confirm the allergy. I am recommended cetirazine antihistamines. Of course it might be different with nuts.

Yes it's potentially very serious so he needs to be careful with the nuts from now on.

Honestly OP it's very scary but checking labels and menus etc. quickly becomes second nature and while it can be frustrating at times it is easier than you might think to avoid nuts. No.1 rule is that if you aren't sure about a restaurant/cafe and they don't seem dilligent or try to fob you off then just leave. Also be prepared to be refused service, it is known to happen a lot.

We have been carrying epi's for 8 years now and never used them. DS hadn't reacted for such a long time his consultant ordered new testing last year just to check and yes he is still allergic we are just good at avoiding them.

Update.
firstly thank you for the support and companionship. I hope my fellow sufferers are all doing well.

we had the private appointment on 1st. There was a strong skin prick reaction to Brazil nuts - potentially fatal. And High sensitisation to house dust mite.
everything else was negative.
the dr switched him from emerade to epipen as they are smaller - a lot of teenage boys don’t carry the pens they have been prescribed so it’s a real issue.

we went on the holiday with no bad experiences but dh/ds ordered a takeaway couscous dish without thinking and restaurants were so variable! So eating out and at other peoples houses is an issue.

on our return from holiday we have reintroduced pistachios, peanuts and almonds, sitting with our epipen and inhaler in a drs car park.
we will do hazelnuts and cashews over the weekend.

ds doesn’t recall ever eating macadamia nuts so we may request more blood tests for that, also pecans and chestnuts.

I’ve ordered a book on nut allergies. It’s all so weird but I guess this is how it is. I’m not sure if immunotherapy for Brazil’s is available anywhere in the world...

It seems to be only in the last year that they have started to recommend you continue with other nuts

That all sounds really positive. It's scary, and, yes., so much easier to manage at home. The best way to get recommendations for safe places to eat is from others with the same allergy/ies. FB groups are great for this.

@Mytortoiseisbetter thank you for updating, and good luck with everything.

My DS recently had his hospital appt too, and is also allergic to Brazil nuts like your DS (total surprise) and walnuts (which we expected). He also needs a blood test for macadamias and pecans. Other nuts were either from his history, or on testing. We were only tested for nuts though, not house dust mites or anything non-nutty.

I've been told very different things about likely severity and the need for epipens by 2 consultants in different units (long story) so it’s all still quite new and confusing and I’ll have to do my own research too. At the moment we’ll err on the side of caution though, and take them with us.

Whatiswrongwithmyknee · 11/06/2022 00:14
“I'm allergic to Brazil nuts. The reaction you decribe is what I get. My allergy is confirmed with testing. He needs to get tested and propert advice. Meanwhile avoid all nuts and don't kiss anyone who's just eaten them (you live and learn!). Seriously though, take this seriously. Every reaction I has gets worse. I'd now get that reaction from a trace amount of Brazil nuts.“

thank you. Guess he needs to avoid kissing rich girls! (Brazil’s v expensive)

GnarlyOldGoatDude I have been thinking of you.
there’s a typo -are you saying other nuts were excluded via testing/history?

did they tell you to reintroduce other nuts?
we’ll do cashews today but will sit on a bench outside A&E I think.
then hazelnuts.

Gnarly how come the contradictory advice?
I have a book called Understanding Allergy arriving today

Hi yes sorry tortoise, I missed out a vital “ok” in my sentence!

other nuts seem ok from his eating habits (he eats loads of Nutella and pesto) and he was negative to peanuts, almonds and pistachios on skin prick.

One consultant (brief chat, by phone) said this was the worst his reaction was likely to get, and he didn’t need an epipen.

Other consultant ( saw in person, did the prick tests) said it was unpredictable as to the severity of the next reaction, and that he needed to carry antihistamines and ideally epipens at all times!

@Mytortoiseisbetter yes the consultant we saw said it was important to eat other nuts regularly (at least once every 1-2 weeks), to try and prevent his immune system becoming allergic to them too.

so he’s happily munching on chocolate M&Ms each day. Got to think of a palatable form of other nuts! He’s not actually a fan of most nuts in their pure non-chocolatey form 😂

I’m sure he must have had brazils previously, but can’t think that he’s ever had macadamias or pecans. Maybe he’s always been a bit allergic but it just hasn’t arisen as he hasn’t eaten them, or the symptoms have been so mild or masked as something else.

Got it. Consultant 1 sounds mad, I’m team consultant 2.

I’ll eat a to Toblerone if you will :)