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my neighbour has shown us where their epipen is (it went out of date in 2020).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

Yes, my sons reaction symptoms sounds very much the same as yours. He does avoid nuts but has occasionally been caught out, mainly by chocolate products. He does also have bad hay fever which is obviously his link to the reactions.
Once you see a Dr/nurse specialist you’ll get the tests he needs and the advice to manage it.

I think what’s really hard is the limbo that you’re left in, between when the terrifying event happens, and when you can actually see a specialist to untangle and diagnose what this actually is (be it allergy, pollen crossreactivity, or potentially fatal anaphylaxis).

As a parent you just feel absolutely terrified for your child, and suddenly aware of how nuts are in so many things (chocolate brownies, I’m looking at you!)

Prior to this, we’d always been almost blasé about food allergies. Now, I’m wanting them to ban all wretched nuts eg on planes etc.

At least the kids’ schools are nut free. Again, something I’d been fortunate enough not to have to appreciate before all this.

Yes we were told to be trigger happy with the epipens! Better to overuse than under use. Was told it was essentially harmless as it’s just adrenaline. The reason you call 999 when administering one is because the reaction needs medical attention not because of the epipen use. Thankfully I’ve never had to use one.

I have always felt strongly against nuts on planes, now I know I’m on the right side of history!

Last time we did a long haul flight we specifically chose an airline because they said they were nut free. True we had little pretzels for the snack, but one of the dishes was satay chicken. I was beyond horrified and spent the whole night awake and monitoring DS1. I wrote a letter to the airline when we returned, but never got a response.

Did it definitely contain nuts though? People tend to call the peanut sauce that often comes with satay "satay sauce" but technically it's the meat on skewers that is the satay and it isn't always served with peanuts. My DS is anaphylactic to nuts and peanuts and we've bought satay that is peanut free before - it can come with different sauces.
I've never come across a satay with nuts in in fact - peanuts and coconut yes, but of course neither of those are actually nuts. I wouldn't assume anything stated to be nut free is peanut free without checking, or vice versa.

Paradoxically satay is quite often nut-free. It’s the accompanying sauce that is made with peanuts. What did the cabin crew say when you asked about the ingredients?

Satay is usually a mix of soy sauce, fish sauce, lime juice, honey, sriracha sauce, ground ginger and garlic. Or similar.

The peanuts are only if there is an accompnying peanut dipping sauce for the satay chicken. There often is....but maybe not on the flight?

My husband has developed a serious allergy like this where his throat closes up. He made an appointment with the GP to be referred to the allergy specialists at our local hospital. Our GP said “just don’t eat that specific food and you’ll be fine”.
He had to speak to two GP’s at our surge before they would refer him. This was back in November. He’s still not heard back from the hospital.
This is a potentially life threatening conditions that is just being ignored.

Grin :(
The more I read about others in the same boat the more I worry!

We had difficulty getting annual travel insurance for the kids. We could only get single trip cover paying an additional premium.

We did find that the cover we had through our bank account was fine to cover annually.

I now have travel insurance through my work which as it's a group policy covers all pre existing conditions. Worth checking out your work benefits package.

Hi yes, to answer previous qs it was satay with a satay sauce. I assumed it was peanut sauce because I have never known a non peanut based satay sauce. I have looked at the airline website (Singapore air) and they say they do not offer peanuts as snacks since 2018. But maybe that does not extend to cooked sauce? I don't know.

On travel insurance - I use the post office insurance. DS1 (and I) have a load of pre-existing conditions so it is expensive (multi trip annual this year for 3 of us was close to £500.00, but it does cover [counts quickly] 7 conditions we have]. DH gets insurance via work and has no pre-existing conditions at all, lucky thing.

Morning - DH called our gp and said we want an epipen. They've made a f2f appt for DS2 tomorrow afternoon so that's good. So hopefully we won't get resistance there once DS2 tells the story I've told here. The staff at GPs said the blood test results should only take a few days.

Turns out my breakfast cereal has Brazil nuts in it so I'm making an appointment to get new reading glasses!

It's "reassuring" (if that's the right word) how many people we've talked to since Thursday night have epipen holders/nut allergy sufferers in their household.
I've told the school also to "treat as anaphalaxsys and call 999" if DS2 has any further symptoms whatsoever.

Honestly. Since the pandemic life has not been fun. Hopefully this going to be just another punch to roll with....

I know how daunting it can initially feel. But dealing with food allergies does become so automatic, it takes adjustment at first though.

My older DS has recently developed another allergy that we are still getting to the bottom of (with his consultant). It is really rare and so bonkers that people tell us we are imagining it when we try and deal with it (he seems to be allergic to cold.... he gets hives when exposed to cold water, cold wind etc. So icecream is out, ice in drinks are out. swimming in the sea or unheated pools are out etc). I have really struggled to come to terms with this because it is yet another thing to add to his list (and also if you think people scoff at food allergies you better believe they scoff at a cold allergy). But we are adjusting, and now have strategies to deal with it and developing those as well.

It sounds like you are on it, and you will have medical support and advice. I hope it all goes well.

@Mytortoiseisbetter well done! Good luck with the GP consultation. Do keep us updated- it’s been v educational for me to read this thread, and to hear from others who have been through it or are also still going through the diagnostic process like we are

Well done from me too.

@SummerLobelia I have a weird/rare allergic condition too and mine also sounds bonkers when I try to explain it, so you have my sympathies and I hope he can find ways to manage it 💐

Thanks @Yarnasaurus I appreciate that.

sympathies Lobelia, many sympathies.....

science does seem to be catching up with the allergy bastard with immunotherapy just being launched on NHS for peanuts (google it). so tree nuts next let's hope with unusual allergies to follow soon soon soon

Cold urticaria @SummerLobelia ?
There's quite a big support group on Facebook that you might find helpful if you haven't already found it.
I have a child with a rare medical condition and finding other people who have it can help you feel less isolated, even if they are on the other side of the world!

yes that is it @AgeingDoc :) Thank you I will search out the fb group! It does feel very isolating and poor DS is really low with it. He has a range of medical issues and adding this has really impacted him.

Oh I am just perusing fb now. Thank you so much @AgeingDoc it is so amazing to read posts (on fb) from people who know exactly what I am talking about and don't immediately roll their eyes and start blaming an over anxious mother!!

I can empathise SummerLobelia. Before my son got his diagnosis I am certain that most people thought we were making it up and that I probably had Munchausen's by proxy, and when we finally did get a diagnosis nobody - most HCPs included - had ever heard of it and there was no UK based support group. It definitely makes things harder. Online groups were a bit of a double edged sword because of course different countries do things differently so some of the treatments other people were getting were at odds with what our specialist here recommended, but simply talking to other people who didn't say "Whaat? Never heard of it!" gave me a boost.DC was a toddler so had no idea what was going on, but I felt very isolated. Dealing with a sick child is bad enough as it is, without the added insinuations that you are making it up. I hope things look up for you and your DS soon.
.

I have a latex allergy following years of wearing latex gloves. What is interesting is that I have cross reactivating and although I love bananas I can no longer eat them. It took a while to make the connection. I used to eat a banana most mornings for breakfast and then have abdominal pain that would start in my stomach and progress through my abdomen throughout the day.
I occasionally get it with other foods but mainly orange flavoured or coloured foods so probably tartrazine.
I have had the metallic taste with some foods, fresh tuna being one of them. I suspect it is the concentration of chemicals in the fish rather than the fish itself since I have no problem with canned tuna.

The latex allergy is a real problem with medical procedures, they had to use clingfilm when doing an ultrasound of my neck.
Also plasters and dressings are a nightmare.
They do take it very seriously since I can tell within seconds if I put on latex gloves by accident ( occasionally happens if there has been an error with our supplier and I haven’t checked the box). As a result I am very vigilant.
In the past I used to have very sore swollen throat after a general anaesthetic due to the latex intubation tube. They now use silicone tubes so a big difference.
Fortunately we always have epipens at work along with oxygen and fully trained staff.

Allergies are complicated. Not every severe reaction is anaphylaxis but it’s not worth taking a risk. Severe asthma, triggered by allergy, can be life threatening. Both need A&E treatment.

Specific allergy FB groups are a godsend, mine is a global group and only around 800 members, but it has been fantastic for support and advice.

I have been lurking on this thread. I have a DS with a peanut and egg allergy and also cold urticaria! His allergy doctor told us it was 'rare' so unlikely he had it. Rare does not mean never happens! I have now joined a FB group for the latter based on the comments and am so so pleased that I have found others.

Thank you everyone who responded to this thread.

I am not sure if i will return to lurking or if I shall join in fully.