Anaphylaxis questions

[Greentent]

My DS (18) has a nut allergy (brazils and walnuts). We were told at the hospital that his brazil allergy was the worst they had seen based on skin test. He's never actually had anaphylaxis - he was given a walnut, spat it out and his lips and face swelled up which is what led to the testing. Yesterday, he was on a train and a man got on eating brazil nuts. DS ended up having to get off at the next station with anaphylactic symptoms - shortness of breath, pins and needles on his face, feeling dizzy, etc. He took an antihistamine and slowly recovered. He caught another train and was fine by the time he got home. I phoned the NHS helpline who told me to monitor him and phone back if necessary. I phoned the doctor's surgery and they told me to take him to A&E. He was actually totally fine when he got back so I didn't do anything. I'm just wondering what the protocol in these situations should be and if he could have gone on to have more serious reactions later in the evening. A friend suggested he should have had more antihistamine and monitoring at the hospital. He had an EpiPen with him but I don't know at what point that should be used? I presume when breathing becomes really difficult. Should he have had an inhaler with him? Is there anything else he could have taken - something in between an EpiPen and antihistamine tablet? Thanks for any advice you can give us.

Mild/ Moderate symptoms, give antihistamine and be prepared to give epi-pen.

Any breathing difficulties, give epi-pen and always call ambulance (say "anaphylaxis" so you get an emergency response) even if there is an improvement in condition as the adrenaline is short-acting and longer-term treatment is needed.

DS might be well-advised to think about how he would have alerted someone at the station as to what to do if he'd started having breathing difficulties - e.g. carrying a card with instructions that he can hand over. Passers-by seeing him having an allergic reaction (acting "strangely" and taking tablets or trying to give himself the epi-pen) may not immediately think "medical emergency" and might be reluctant to get involved or not know how to help.

Thank you very much for your good advice. I will definitely look into him having a card with him that alerts people to his condition. He's off to uni in Sept and I don't trust him to remember his epi-pen or to be extra vigilant so it's a worry.

I'm an Aussie, so may be no help to you, but we have anaphylaxis management plans here. My allergist ran me through which symptoms were antihistamine ones and which ones were epi pen ones when I was formally diagnosed. A copy of the plan is with my epi pen, so me and anyone who is with me knows exactly what to do. Here's a link to the ASCIA plans:

allergy.org.au/hp/anaphylaxis/ascia-action-plan-for-anaphylaxis/

Thank you. That's really really helpful. It's exactly the kind of thing I was looking for. I will print one out for him to carry in his wallet.

Did he not get a treatment plan when he was seen at hospital and talked through it. DS has one which has phrasing very like the one quoted above for mild to moderate. It gives three types of reaction mild, moderate, severe. Describes the symptoms of each and what to do (antihistamine and monitor, antihistamine and seek medical advice, use epipen and call ambulance basically)

He also has a medic alert bracelet as if he was having a reaction and couldn’t communicate someone should hopefully see that and realise. His treatment plan is on a piece of paper with his epipen and antihistamine.

It sounds like he needs some training in how to handle it. Can he ask the allergy clinic. If not I’d recommend contacting and joining the Anaphylaxis Campaign.

He should also discuss with friends so they know what to do. As he’s 18 they should be able to understand and react appropriately. Part of that is also knowing where his epipen is. DS is on him at all times but if your son has it in a bag they need to know that for example.

Hi OP, I have a severe nut allergy too and I just wanted to let you know that he should carry 2 Epipens on him if he doesn’t already do so because a second dose can be given 5 minutes after the first if it is required.

He should really be carrying to Epi-Pens, with extremely severe reactions one is not always enough to stop a reaction. Ideally, he should be wearing a medi-alert bracelet or similar which should help to alert passers by to the fact that he has specific medical needs.

As for when to use his Epi-Pen, with my sister who has extreme anaphylaxis to multiple things, we use it as soon as she begins to have difficulty breathing (to be honest, she's had so many now that she tells us when it's time to use it). If she's on her own and has a reaction, she tends to use it a little before that (often when her face and lips begin to swell) because it's happened before that she's passed out because she waited too long to take the Epi-Pen. Personally, it might be best to advise your son to do this because the number of times my sister has nearly been injected in the heart by people thinking they know what to do is worrying. If he uses it himself he knows it's being used properly and can ask someone else to call an ambulance. It's also worth making sure that his friends and people he spends a lot of time with know how to properly use it.

Once he has used his Epi-Pen he will always need to go to hospital, even if he feels fine. They will need to run checks and tests to make sure the reaction doesn't progress further.

I'd echo what everyone else said. But also - did he actually or touch the nuts? Although there are people with airborne allergy, it is also possible that this was a panic attack. My dd, who has several severe allergies and carries an Epipen, also went through a period of panic attacks around her allergy, which was difficult because it is of course similar.

We were always told, if in doubt, use the Epipen - you won't harm yourself. Really sounds as though he needs some training, though. I would recommend joining the Anaphylaxis campaign, and signing up for mobile phone food alerts. They have a campaign aimed at teenagers/young adults which TBH I have never watched, too traumarised: always take it, always check food, have a clear plan (including what to do if you are by yourself).