Life with a cashew nut allergy?

[WhateverSoup]

After a severe allergic reaction (but not anaphylactic) a couple of months ago my two year old had an allergy test, which confirmed that he is allergic to cashew.

We suspected it of course after his reaction but for some reason I thought the allergy test wouldn't show anything. I remember even wondering whether I could trust a negatively result.

I know food allergies are common and deaths from anaphylaxis are rare but I'm so upset right now. I feel like he's got this dark cloud hanging over him for the rest of his life. He'll never be able to just eat anything again, always having to check ingredients first, always having to carry his epi pens around with him. And once he grows up what if he isn't responsible enough to do that or gets drunk or feels awkward to check everything? What if I forget to check the ingredients? What if something is wrongly labelled? What if someone at nursery or later at school messes up?

Please share your stories with me of how a food allergy has affected your life or that of a loved one (both positive or negative stories are welcome). Or if you have any tips. Thank you

My DS has a peanut allergy, although he has had treatment (OIT) and can now eat them without having an allergic reaction (although the treatment itself has drawbacks).

One thing I'd say, is that don't be afraid to use the EpiPen if your child is experiencing symptoms. Especially if your child has been diagnosed with asthma. Sometimes it's difficult to know if a child is having an allergic reaction or an asthma attack. EpiPens work very quickly.

And I found it extremely stressful in the first few years after my DS was diagnosed. But we still managed to eat at restaurants, go to parties, travel to lots of places.

Both my DC have multiple food allergies and both have had anaphylactic reactions and had to use their epipens.

We find nuts straightforward to avoid. Restaurants etc understand nut allergy well. We never eat in curry or Asian food restaurants though as the risk of contamination is high.

Milk and eggs are much much harder to avoid and it's these we have had accidental exposure to.

You just get used to dealing with it though. It becomes part of your life.

@ThomasThorne when DS had his first major lot of allergy tests, the nurse drew a grid and numbered each square, then told him she was going to make bubbles on him then pop them. He was only tiny but didn’t bat an eyelid. They aren’t really proper needles at all. I have had it done myself and It really didn’t hurt

We ate in wahaca restaurant several times recently and they are very good with allergy procedures. Have allergy lists, and only manager is allowed to take your order, and it’s prepared in allergy section with separate colour coded labels

My daughter has an allergy to cashews and pistachios, as others have said they go hand in hand. She had her first reaction at 3. She is now 6. I know it's daunting now, and I understand how you are feeling, however it will become second nature. My daughter is very good with it, will not take food off anyone, checks ingredients (although doesn't always get it right), will always check everything with us before eating. In fact in her after school club the other day a helper tried to give her some chocolate biscuits and she asked them to check (she knew the brand and knew she can't have it) they said it was main contain nuts but they will remove the nuts from it and she can eat the rest (ridiculous) she refused it and went without (so proud of her). My husband and I second second check each other as it can easily be missed, some companies do not label well.
Do not let this hold you or your child back, there are always alternatives and a way around it. We still eat out regularly, we travel. We teach our daughter having a nut allergy is not going to hold her back and to be loud and proud about it :)

That's a brilliant way of putting it!!

My 5yo was diagnosed with a peanut allergy last summer. She didn't have anaphylaxis that time but does have epipens now.

It was a bit intimidating at first but we've found our groove now and come to the conclusion that if you're going to have an allergy, this is a good one to have. So much easier than avoiding something like milk or eggs.

We drill into her not to eat anything unfamiliar without checking, and that if she can't have something nice because of it, not to worry we'll make sure she can choose something just as nice asap.

We gave her teacher a bag of safe treats so that if anyone brings something in that she can't have or the teacher isn't comfortable giving, she can have something from the bag.

You'll find your way with it.

I don't think anyone has mentioned www.anaphylaxis.org.uk? They have so much info on how to manage, and a helpline. I grew up with a similar allergy and it is sooo much easier now that epipens are available. Check out Allergy UK about when to use them.

Do be aware that you'll set the tone for how your DC handles this. Inform yourself about the practicalities which will hopefully reduce your anxiety.

• Check out Anaphylaxis UK

Thanks I'll check them out. What do you mean by setting the tone? Do you mean like modeling to him to be both calm but diligent about it?

you will become more used to checking labels. My DS has severe allergy to cashew, pistachio and sesame. Carries an Epi pen. Did have a fairly bad reaction a year ago ( 1st time) where a sesame seed was in a pizza dough!… it was an artisan pizza and not from a box( Ifyswim). We learned a big lesson that day NOT to go for the take away/ artisan food as it’s hard to know what their kitchen and processes are! Other than that all is ok:) school
is nut free and he knows himself what he can and cannot have!

Also I always keep a snack and treat on me that’s suitable for Ds. I don’t want him to feel it’s a burden, so when others are offered chocolate with nuts or cake I’m not sure about we have haribo and oat bar in handbag at all time ( easy as doesn’t melt!), and he knows we have suitable chocolate at home he can have later.

I wouldn't downplay skin prick tests actually. I've spent more time than I'd like in paediatric allergy clinics over the years and in my observation lots of children, my own included, get pretty upset about it when they are little. No, it's not the worst thing they're ever likely to experience but it isn't nice either. The stylet may not be a "proper" needle but it is sharp - it has to pierce the skin after all - and if you are a small child you don't really have the cognitive capacity to apreciate that it's only small, especially not when someone is holding you still and pricking your arm 30 times .There is also a degree of operator skill that definitely makes a difference. There was one nurse at the specialist centre where we ultimately got referred who was super fast and DS did barely seem to feel it when she was doing it. If she was the only person I had seen I might have said that it's virtually painless too, but unfortunately we have had some very different experiences with other people.
The other thing is that perception of how unpleasant it is will depend on the response. A few small reactions and you'll probably report it as a bit uncomfortable but a dozen strongly positive tests on one arm leaves a mass of intensely itchy weals which of course you have to stop them scratching and can't medicate until the time period is up. My DS has had a lot of invasive procedures over his life, due to his allergies and another long term condition he has. Lots of them have been bigger, more painful things than skin prick tests, but he really hated those tests. It was the itch more than the pricking I think. It's great that people have had fairly easy experiences with skin prick testing but it isn't always the case I'm afraid and I think it is better to be aware of that.
My advice take some distraction, wear clothes that allow easy access and something light made from soft fabric to put over the top on the way home. When DS was very little I found that once he couldn't see the weals he would calm down, so I'd put something long sleeved on him asap afterwards. And don't forget your own anti histamine. Obviously you can't give it until the results have been recorded, but I would be getting it ready to give the minute they'd been checked. The nurses would always say "Oh we can give you some of ours" but they have to get it prescribed, checked and so on and it adds quite a bit of time. If you have your own it will be starting to take effect before the nurses would have administered it.

When my son has had skin prick tests, the result is the size of the reaction welt in mm. IIRC 2mm shows borderline sensitivity, anything over 2mm indicates allergy.

My DS is anaphylactic to sesame too and of all his allergies it is the one that infuriates me most. People "get" nut allergies on the whole, and I have never really had a problem getting the message through in restaurants etc about that. But sesame, despite being one of the 14 allergens legally required to be on food labels often seems to get ignored in restaurants. I have lost count of the number of times when a burger has come in a sesame bun - even when we have specifically asked - most Asian restaurants are out, and there seems to be a trend for scattering the little bastard balls of death over all kinds of unrelated stuff at present. I have had two experiences in the last month (different places) where salads have come with sesame seeds on and there's been no mention on the menu. Things are lots better than they used to be, especially for the commoner allergies, but there is still a long way to go.

I feel exactly the same as you!! Bloody toxic things and it isn’t even like they add any wonderful taste to food!!😡

Just to make you aware, pink peppercorns are part of the cashew family. Not many people seem to know about this either.

My DD had skin prick tests and then a blood test a few months later. She found the skin prick tests quite sore - it did hurt to have done, and then really stung after. The bloods were fine because they could use numbing cream and they distracted her with a tablet etc.

Thanks I'll check them out. What do you mean by setting the tone? Do you mean like modelling to him to be both calm but diligent about it?

I think that probably is what PP meant. I'm in a few FB groups for allergies and obviously those groups tend to self select for people who are very worried about it. Honestly I think some people think nuts should be outlawed, there's some very extreme posts. I think those attitudes don't help, because I think it's inevitable that DC raised like that will either be terrified or rebel when older. The more balanced replies often come from people whose DC have allergies to thinks like milk that can't be avoided and so they have developed excellent coping strategies.

Yes, without putting too much pressure on yourself to handle it perfectly.

I got very anxious about mine as my parents basically ignored it (70s/80s parenting? 🤷🏻‍♀️) so once I was old enough to realise (7ish) then the responsibility was totally mine. A middle road has to be best, so you are taking care but not projecting anxiety onto them.

Just wanted to add that you can order a free Epi-pen trainer here,

https://www.epipen.co.uk/en-gb/patients/your-trainer-pen

We used this to show people around ds how to use his auto injector in case he had a reaction.

Oh my goodness yes, sesame is a nightmare. So many may contains, we've had reactions to products that had no warning but on further investigation they use sesame in the factory - and those little blighters get everywhere

Just re-read your OP. It honestly shouldn't be a dark cloud over his life. There are many stories on the Anaphylaxis UK website and newsletter of teens with multiple severe allergies going on remote survival trips etc. As long as a safe, informed base is provided, I think they just manage it and get on with it.

I've been very drunk many times and somehow always taken enough care with nuts. It's kind of baked in. Although I had a time of bad anxiety about it (due to no care being taken by parents) there are many other conditions I would find much harder.

This.

I'm a HCP so I coped with it quite well but DH struggled and we had issues with his Primary school, they were a nut free school which I think they didn't need to be.

We had a couple of instances where someone had bought in a Nutella sandwich for lunch, they made Ds eat his lunch in a separate, empty classroom and wouldn't let him in the hall for the rest of the day. It was a huge overreaction on their part. I then had to explain the difference with tree nuts and peanuts (legumes)

I know! They are pointless. Most people wouldn't care if they were not there. Ok, I wouldn't go into a Pan Asian restaurant and demand sesame free food as it's an integral part of many dishes that they cook, but when I order a salmon salad in the local cafe I do not expect it to come plastered with the damned things. Especially not when there is no mention on the menu.
Disappointingly, I find small independents the worst for this kind of thing. You'd think that places that cook to order would be more flexible and thus able to cater for allergies well, and indeed sometimes they are great, but a lot of the time I've found knowledge to be lacking. At least in the big chains you get consistency even if its not terribly exciting. My DS knows for example, that if we go into a Zizzi whether it is in Aberdeen or Southampton that the same policy will be followed and whilst he might not have a huge choice there will be something safe for him.

💯 this!!