My anxiety around children's food allergies

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I've developed really bad anxiety around my children's food allergies, particularly in relation to eating out. (They are allergic to milk and egg)

ds started nursery a month after his first big allergic reaction so I guess I'd always been used to accepting other people were responsible for some meals, and that really helped (they were an amazing nursery in terms of how they catered for him too).

Pre pandemic we ate out reasonably regularly. I never totally loved it , was very careful where we went etc and always on edge a bit.

But we stopped in the pandemic as I didn't like the idea of taking any risks in a system under strain

But now , I guess because we totally stopped for a bit, my anxiety is crippling me. The last couple of times we've eaten out I have barely managed a mouthful of food. But they really want to eat out, and look forward to it.

Has anyone else experienced this and what did you do?

(I'm not an anxious parent in other respects, I cheerily wave them off to do adventure sports etc- they've been sailing all day today!)

Why not start by going to vegan places to eat out? Or at least places that serve vegan food? then there wont be an issue as there will be no egg or milk.

True, but (for brevity) I left out that one of them is also allergic to nuts and lentils, which often feature heavily in vegan food.

I'm really careful where we pick to go, but agree an element of cautiousness is probably rational. But my anxiety just seems to have spiralled to an intolerable level

I know just how you feel, OP. One of mine is allergic to nuts, legumes, egg, sesame, fish and a long list of other things (seeds, especially, but also random things like figs and some shellfish). The anxiety can be absolutely crippling. My only suggestion is that you redirect that energy into advocating for your children’s safety. Your anxiety can become extra vigilance because that is what they need until they are old enough to look out for themselves. It’s not practicable never to eat out, but you can speak out and make a ‘nuisance’ of yourself in every restaurant you visit - if that’s what it takes. I was generally pleasantly surprised by how willing catering staff were to accommodate his needs, and if we were ever met with any hesitation or doubt, we didn’t risk it. Chains are best because their ingredients tend to be standardised and documented. Independent and small restaurants are more difficult because a smaller kitchen can mean a greater risk of cross-contamination.

My allergic child is now a strapping 25 year old who lives overseas (he’s an athlete). I still worry, obviously, but he has it covered. I like to think that, to some degree, that’s because we demonstrated that speaking up in a restaurant, explaining about the allergies and exploring whether safe choices were available, can be routine.

Thank you for understanding. It has really helped.

Yes , much as I would love to shy away from eating out ever, I feel it is so important that I teach them how to deal with their allergies in restaurants. I know they will need these skills as they grow up.

There have been times we have gone home because we forgot a medical bag, times we have left a restaurant because they couldn't answer my questions satisfactorily, and a time I sent a meal back as it had a bit of cheese on it and I made it very clear they would have to cook a new meal.

I do tend to stick to a few chains that seem to handle things well.

But honestly I am so cross with myself the anxiety right now is just utterly and physically overwhelming and although I think I am hiding it from my children and chatting away, I haven't managed more than a few mouthfuls of food. The restaurant this evening didn't charge for my dish bless them even though I was very clear I hadn't felt able to eat it as I wasn't feeling well

Ps it's lovely hearing how your son is doing,.that really put a smile on my face. Mine both long to travel the world when they are older, so i am also pushing myself to travel with them even though that makes me anxious too. I haven't been able to face eating out abroad yet though.

Hi, I have two children with similar severe allergies. The eldest is now six and hasn't outgrown them (though tolerance is increasing). The anxiety doesn't leave you but you learn strategies to manage it.

Firstly, always carry all your meds with you everywhere you go. You should have both piriton or certirizine on you in liquid form plus epi pens/Jext if you carry adrenaline.

For carefully moving towards eating out choose places that have a very good and clear allergy policy. The best major chains are Nando's, Zizi, Pizza Express and Wagamama, so maybe try those to build your confidence. If I ask somewhere and they appear to have a poor allergy policy I just don't even risk it. It's not worth it. We often carry packed lunches in case we're not sure we'll find somewhere suitable.

I also had some counselling around anxiety and parenting rooted in allergies and eczema managent. It really helped.

Get in touch with other parents who really get it. There's an online organisation called the Allergy Team that are really helpful. If you're on any social media I find the community of allergy families v supportive.

Are your kids picky? I find that bit the hardest - especially as my eldest doesn't eat well and is very small and slender for her age.

Ps: please don't be cross with yourself. Parenting with allergies is really f*ng hard and people who haven't experienced it just don't get it. We haven't been abroad yet with our kids because I'm just too scared although I've got to go for it at some point (one has a peanut allergy and I'm frightened for the flight).
Please do be kind to yourself, small steps are best to help broaden your horizons and theirs xx

Thank you for your post @Snowjive2 - I'm already nervous about the idea of my kids getting older and having to manage it all themselves so it's wonderful to hear about your son's busy fulfilled life and that he's totally got it all covered. That really made me happy!

Is there any trial you can get him into to test in hospital how allergic he is.. we were in fear of peanut dust, but our son got into a trial, was refused that he had an allergic reaction At peanut number 26.. and I was terrified of 1.. oh and send your husband that day..

We got into the trial by asking the nurse at his regular allergy app at Evelina clinic if there was a trial and if there was could he enroll.. and a year later we got a call..

@Knockmealdowns we are under the Evelina. Was this immunotherapy? We have the yearly skin prick and blood tests, plus oral challenge for tolerance (eg baked milk) but haven't heard about what you're describing.
I'm told my peanut allergic toddler could qualify for nhs immunotherapy when she's 4. We couldn't afford it privately

@YukoandHiro yes we only stick to certain chains I feel confident with (zizzi, pizza express, TGI...) And I always have their medical bags . When we forgot them for the cinema they had to go without popcorn (which we buy in packet from shop), but they totally understood

I've always been very very vigilant, but right now this feels like my anxiety had been multiplied by 100 and it's physically overwhelming . I felt physically sick beforehand, couldn't eat anything really at the meal, and now just feel utterly drained. Did you get specialist allergy counselling or just focus on this with a normal counsellor? I see a counsellor anyway so could ask her to do some work with me on it perhaps

They were very picky eaters when little (ds at one point pretty much only ate ham, sweetcorn and bread... I expect because so many foods felt unpleasant (he also has oral allergy syndrome so reacts to raw fruit /veg). But DS is now a very adventurous eater and both of them are very keen to eat out and they really enjoy it

Oh I soooo feel your pain!
My dd has an airborne nut allergy ask well as oral allergies to several things. She’s also under the Evalina and St Mary’s.
it’s so hard eating out but I do find the big chains easier.

for me, it’s the attitude of some staff that tip me over the edge though. They look at you as if you’ve come off mars when you flag an allergy.

Even worse is public transport such as trains and planes with the airborne nut allergy. I go through the whole process of letting them know before the journey and as soon as we arrive. But still I’m fighting for an announcement to be made. Then it’s either too late because nuts have been served, or I hear other passengers moaning that they’ve got a packet of peanuts and they’ve every right to eat what they like!!

urghhhh!! It’s so hard. If only they knew the implications!! Dd has needed an epipen twice on public transport due to selfish passengers!

Airborne must be incredibly stressful to manage! It's disappointing that some people don't care about making adjustments for others.

It is tricky isn’t it. We are on holiday in Greece with my dd who is very severely allergic to peanuts and also allergic to pistachios and cashews. The hotel are great, but we’ve been reluctant to eat elsewhere! Also the hotel seems to group all nuts together, not label individually. We were advised by the allergy clinic that if a label says may contain to rub some on her skin before eating it, which is fine at home, but harder out and about.

You can do online CBT for anxiety and part of that will be working to see what you can do to help you work through your anxiety in certain situations. I think COVID didn’t help you, as you didn’t eat out for a while.

I agree with others that chains like Zizzi can be good, which might reassure you.

Do you have the contact details for the allergy nurse(s) at the hospital? Surely they must have been asked about this kind of thing before. Also they would be able to give you an idea of how worried you should be, e.g. how severe is their allergy, other risk factors like how severe is their asthma etc.

Nandos is fabulous for allergies. We have multiple allergies, all non-ige so we don't have to be too concerned if we do have cross contamination or a slip up, but we still stick to a handful of chains

@IkaBaar that's a good idea,.I'll look up the online CBT.

I think, rationally, their allergies are sufficiently severe that we should be cautious when eating out. We shouldnt ever be complacent (eg. we should be careful where we go, never eat without the medical bags etc)

But I also know it's not sensible to have got to the point I am losing sleep the night before, and unable to eat when I am at the restaurant.

I'm not anxious about other things really, mine do loads of adventurous sports etc. And I used to be able to get a sensible balance.

I did get incredibly anxious when we went abroad too, and I couldn't face eating out and we did really only eat food from home.

You have my sympathies. DS is 16 now and I'm sure restaurants are going backwards with allergy support.
They're lovely with my gluten free food, even though I make it quite clear I won't drop dead and it's my sons food they need to be careful with. We barely eat out now TBH. School even messed up his Prom meal (he barely ate anything) which really set him back.

Oh no, . Yes dsd had her prom recently and it got me worrying about DS and DD when they have theirs!

Try not to be too hard on yourself. This isn’t some irrational anxiety, it’s based on very real circumstances. I am the parent of a child with severe food allergies and it’s a constant stress. You can learn to live with it and grow around it but the nature of allergies means you need to stay vigilant and can’t completely relax.

Others have suggested some good resources. I’ll add Allergy Companions, a website where you can leave restaurant reviews about dining out with specific diets. And the Food Allergy Counselor on Instagram is a good resource in terms of mental health.

It's really tough isn't it?

DS is egg, dairy, nut, sesame, legumes, fish and kiwi.

He's almost 4 and so far we bring his own food with us to restaurants and he gets a drink. The other day we asked for an orange juice in a little cafe, and I assumed it would be in a carton or small bottle but they brought a glass of fresh OJ. Before I knew it, DS was digging in and I was mentally freaking out in case the juicer was used for kiwi too. Didn't enjoy the meal AT ALL and when he coughed once my adrenaline shot through the roof.

I do think a little bit of anxiety is important so we don't get complacent, but agree we shouldn't let it rule over us.

However, I've read about too many cases of mix ups and reactions at restaurants that I just don't trust them. So many staff don't have the training and don't understand IGE allergies and cross contamination risk.

I don't think your fear is misplaced or irrational.

If DS strongly wants to eat "real restaurant food" some day soon, I think I'll start with Nandos but can't imagine I'll enjoy the meal :/

It’s a nightmare isn’t it. My DD is 15 and the only time she has has anaphalysis is after eating out so we only do it now if we are abroad and there’s no other option, and even then she sticks to very basic foods. She suffers anxiety about it more than me, but when I think about all the things she can’t do, I start to feel all panicky. I don’t know how she will go on dates, travel, or go away to university. She had counselling through the oncology department of the hospital and at the time, her main worries were about food and she ended up talking to the counsellor about her worries about food and allergies. A the time, her paed said that the level of anxiety caused by allergies for suffers and their care givers is really overlooked.

We stopped eating out, as I say mainly through her own insistence, but I would stick to places you trust and make sure you feel confident they realise the seriousness. It’s really tough for parents as well as children.

I understand your anxiety, OP. I was diagnosed with a peanut allergy when I was two and learned to read labels on food packaging in early childhood. I also learned never, ever to eat anything unless I knew exactly what the ingredients were. I always have an Epipen on me. Granted that egg and milk is much more difficult to avoid than peanuts but certainly not impossible. Good luck!

I totally understand how you feel @Runninghappy - i find it manageable now as they're so young and school have been great but I worry about their limitations in adult life.