Help for child with severe nut and treenut allergy

[Shad2021]

My daughter (10) was diagnosed with a serious nut and treenut allergy at age 5 after eating nuts and having a serious reaction. She carries an epipen with her at all times and we have all managed this well without any issues until last year when she ate something that we can only presume had nuts in, had a serious reaction and ended up in A&E after having to use her epipen. Since then, her anxiety towards eating has got worse and worse and she will barely eat now when we are not at home, and will not eat anything different at home either. If we are attempting to eat out, we explicitly ask about items on the menu in front of her as she doesn't seem to trust that we are telling her the truth about food not containing nuts. We also show her every packet for anything that she eats at home or out of the home so she can see herself that food doesn't contain nuts and yet she still won't eat.
I know that she is bound to be anxious - I am too at times, but we are really struggling as this continual worry over eating is affecting her day to day life. She is due to move to secondary school in September and on her entrance exam day, she wouldn't eat anything at all.
We spoke to the school and they have said there would never be any items with nuts as they are nut free, but there would items that would say may contain nuts. This phrase alone means my daughter will not touch anything.
We've tried talking to her but are not having any joy at all and are a bit stuck as to what to do next. Do counsellors exist who would be able to talk to her about this? Or could anyone recommend anything we could do?

Just want to add, I totally understand her nervousness but I'm really concerned that she is developing a fear of eating and can see this escalating if we don't try and help her now.
Any help or advice would be really gratefully received.

I would show her the wrapping and if she is this aware, it is not a bad thing, keeping her vigilant. Hopefully she should adjust. Kids go through all sorts of behaviour as they grow, it is serious and she knows it. It is better than being oblivious. Good luck, been there/am there not easy x

I really feel for you and your daughter. There are definitely counsellors/psychologists who could work with her on this - I'd ask your GP, as the first step, but it may be something you'd need to pay for to see results any time soon.

On another note, can the school really call itself nut-free if it carries items that say "May contain nuts"?

I wonder if a paeds dietician maybe with an interest in allergies could help. Speak to your GP for sure

A good friend of mine has a daughter with even more food allergies. She's 12 and has, since 8 years old, learned how to cook food with her mother that is safe for her. She brings it packed in a container/bag daily to school, parties, friends homes etc and knows it's safe for her to eat and everyone else can relax. Some people were offended initially by this 'distrust' of their food, but when they realised it was genuine and not some kind of precocious behaviour it became normal and she was able to enjoy being a fun loving kid again, she also enjoyed feeling like a brilliant chef instead of a burden/failure. This lunch box is not a permanent solution but it has been a great help so far.

It took me a long time to feel comfortable eating out after two anaphylactic reaction in 6 months. It was hard enough to eat at home in the first few weeks. It feels like such an unknown and made me feel completely powerless. I would work on making her feel empowered in making the right call.
Would she be willing to say she has an allergy to staff at restaurants? Or hand something over? My daughter has 20 food allergies so I have a little card I made and covered in sellotape as cheap laminating of all of her allergies to relieve the pressure of writing them all out for the staff. Could you make her a little note she could handover saying I have a severe food allergy and I need to know which foods are safe for me.
Could you give her some responsibility to carrying emergency medicine?
Ahead of going, go through what is likely to happen. Start with you all have a lovely meal and sparkling conversation then you go and do something fun and exciting. If you had a mild reaction don't worry because we have the antihistamines and if it's worse than that don't worry because I will be sat right next to you.

If going for a meal feels too much dial it back. Go for a lunch time snack when they could have something plain and safe and then build up from there.

I find it so much harder to get through fears when I know what they fear looks like. If you can't manage on your own some targets CBT-like therapy might be an option. I don't know if charities like allergy-uk would have information

That's a tough one. I actually think she needs to be empowered to say "no" to eating at restaurants. If she doesn't want to why should she? Her body her choice imo.

My DD has multiple allergies but we're fortunate to have never had anaphylaxis. You have my sympathy, it must be really traumatic for you all.

Thanks for all the replies. Thought I would post an update - we went to see our GP who actually said that I wasn't taking her allergy seriously and she had every right to be concerned about what she was eating.
At the time, I was infuriated and felt as if the GP wasn't listening to my concerns about her not eating properly.
We actually made her an appointment with the school counsellor who has been fantastic. The biggest thing we were told is not to make a fuss out of it as with the changes she is starting to experience as she enters adolescence, what she eats is something she can control and the more we made a fuss, the more she realised she had the control over whether to eat or not.
3 months on and I'm not going to pretend it had been easy, but she is eating much better and we have stopped any talk of needing to eat at all.
It has been a huge learning curve for us and takes every ounce of willpower not to say something when she doesn't want to eat but we have found that by not reacting at all, giving her the information (and showing her packets) and giving her the choice whether to eat it or not, she is eating more and feeling more comfortable.
Thought I'd post to give people hope who may be experiencing the same as it had been a really challenging time but I finally feel that we are coming out the other side.

Wow.... well done for helping her navigate this. The GP sounds awful. It is difficult to understand the balance between the risks of her food allergies and the impact that not eating has on her life. I am glad that the school counsellor helped.

I am not so sure it is wise to jump to the conclusion that the GP is awful and the counsellor right. The GP is bound to know more about allergies and sadly it is entirely possible for someone who has never reacted before to a "may contain" food to get anaphylaxis from it. It has happened twice to my DS and the specialist department he is under recommends trusting his hunch when he refuses food as an allergic person can often tell they feel different about a food even though it may not be a serious reaction that time.