Anaphylaxis and food allergies

[Redmoon245]

Hello

First Post here so sorry if this is the wrong place!
Posting to see if any is in the same situation or has any experience/advise.
My youngest son had severe anaphylactic shock last September aged 3 ( he is 4 now). This was the result of him having a bite of a reeses peanut chocolate and came totally out of the blue as we had no idea he had an allergy and nobody in our family does. He said the chocolate was disgusting and began trying to be sick and then it was like he was choking. He became quite out of it and kept Gipping and then it seemed like he was struggling to breathe. I had no idea what was happening but just felt absolute terror and knew it was something bad. I phoned 999 for an ambulance but they said they were quite busy so luckily my dad who was there drove us quickly down to the local children's hospital. He had been saying it was the chocolate but I didn't think it was because I've never experienced anything like this. He has asthma which was undiagnosed at the time (because he was under 5) which was poorly controlled as he was just using reliever inhalers and had not been given preventor inhalers. I thought maybe it was an asthma attack or something. The car journey was horrific and by the time we got to A and E he was very pale and lethargic. They took him straight into the resus room where they gave him 2 shots of adrenaline, steriods, oxygen and other things. He developed full body hives during this time and at one point his oxygen level was 74 and they were struggling to get it up. Thankfully, all of the treatments began to work and after a few hours they admitted us to the ward. They said they had planned to put him in ICU but because he had stabilised they thought he would be ok closely monitored on the ward. We were discharged the next day with epipens and finally a preventor inhaler and began this scary journey. Allergy tests a few days later confirmed he is allergic to peanuts and house dust mite and mould so we cleared the house of anything containing nuts and avoid peanuts/ nuts like the plague now.
I have been suffering from PTSD since the event with panic attacks, nightmares and generalised anxiety. I read every label many times and still feel nervous that I may have missed something on it, when he eats i am anxious. I took a few months off work and kept him at home but I have now gone back to work and he is at nursery which is good, he does karate and football and we go out places, I just have to fight the underlying constant anxiety. I have spoken to his consultant and my doctor about the way I feel but have not been offered any support which I find strange due to the situation which I found hugely traumatising and life changing.
I am just struggling to manage my anxiety and wondered how others cope in this situation? I dont know anyone who has or has children with severe allergies like this. I dont feel comfortable eating out anywhere and am only just comfortable sending him to grandparents who he spent lots of time with before, as long as I provide all of his food and they do not give him anything else. He is starting school in September which is another worry.

I guess I am struggling to draw the line between keeping him safe and being over cautious and consumed with worry and fear which I dont imagine helps the situation for anyone.

We are up north but I payed for a private consultation with a respected allergy specialist in London who offers treatment for peanut allergy. Unfortunately them and my sons nhs consultant felt his reaction was too severe for this treatment, although they did say he could have another treatment but that is 18,000 which I cant afford!

Anyway, wow that's alot to take in so if you have got this far thank you! It helps a bit to write it all down as I dont feel many people around me truly understand the situation and think I am over the top so it would be nice to hear from anyone in this boat.

Thanks for reading

My DS is similar but has more allergens. He is an adult now and recently had a massive attack. You will eventually relax more as he gets older but it's always there in the background. But you learn to block it out.

One thing you should watch out for is his attitude to food. My DS would hardly eat because I think he had developed a fear of food generally which I suspect was because of my understandable paranoia around food. We did get referral to psychology for that on NHS for DS mainly but they listened to us too.

Can't comment on treatment as my DS's allergens are too many to allow for treatment.

I don’t have a child with allergies but have them myself. My first reaction was 40 years ago and I can still remember how awful it was.
Knowledge is your friend, that will help you feel in control of the situation, rather than it controlling you. Know all the name forms peanuts come in —— groundnuts and groundnut oil are both peanut, for example.
Make sure the epipens are always in date. It’s easy to forget to check when you don’t have to use them.
search a site called Health Unlocked. They seem to have a group for most health issues.
That must have been so scary for you and I’m shocked you were told there wasn’t an ambulance available.

Had a very similar experience with my DS when he was 2 also due to peanut allergy.
I also found it made me very anxious and it took a long time to get over the experience. I found writing it down like a diary entry helped a bit.
We have learned to be very careful and read all labels, especially as ingredients sometimes change.
You can get wrist bands etc from the anaphylaxis society to wear at school.
When we eat out we tend to stick to chain restaurants as they have an allergy menu, we have eaten a lot of mcdonalds.
On the plus side, it has saved us a fortune as we can never have a cake in a cafe, although bags of crisps can be your friend in this situation.
Also I will try to home bake the treats DS can't have out which has been fun for us all.
DS is in his 20s now managed school and feeding himself at university but was recently tested at the hospital and is still very allergic.

My dd has coeliac. Not as scary as what your son has but I do appreciate the constant anxiety. You can’t really go anywhere without worrying about what they can eat and how it has been prepared. She is nearly 16 now and very careful herself which helps.

My dd is anaphylactic to peanuts too. She was completely fine until she was four and had a reaction. She’s 18 now.

I remember how completely overwhelmed I felt at first. Doing the shopping was almost impossible. But it really does get easier as you learn what to look out for and what foods to avoid.

I think it’s a completely normal thing to want to try and fix it. We looked at the immunotherapy too but by the time you could do it privately my dd was 15 and the older you are the less effective it is. It’s incredibly expensive obviously.

Your dc will just learn to cope with having this allergy. He won’t know any difference. My dd was completely capable of reading labels from the age of six and she knew that she couldn’t just eat anything like her friends.

My (now 20) DD has a tree nut allergy and, as you and PP state, the anxiety around a medical emergency doesn't ever fully disappear.
I found school parties pretty stressful and it certainly affected DD's behaviour as she was never really able to tuck into party food with gay abandon.
University is scary. I'm always afraid she may get a curry or something without the restaurant fully taking onboard her allergy. But she is super aware and doesn't drink so she stays in control (and always has her epipen of course)
Sorry not to be more reassuring but at least this thread shows you that you are far from being alone.

My DS had anaphylaxis following eating wheat in bread. It was utterly terrifying and the paramedic who attended in the ambulance told us how poorly DS looked. Both my kids have various allergies and the fear of a reaction or cross contamination or misreading ingredients lists is always present but over time it becomes less all-consuming.

Thankfully awareness is improving and many food alternatives exist.

I have been Ana to nuts and peanuts my whole life. Diagnosed at 2yo now mid forties. Key things I have learned..

Knowledge is power and be assertive. You wouldn't apologise for being a diabetic when eating out or checking ingredients. Anaphylaxis is no different. Leave any venue which doesn't feel safe.

Join Allergy UK and FB groups for tips on school plans, travel and treatments. Allergy Companions is a good app for safe restaurants.

Empower your son as he gets older to carry his medication and have his friends look out for him. I carry a medication pouch with my treatment plan and emergency plan.

I'll be honest and it has got me down over the years as spontaneous travelling and eating out is impossible but I plan ahead and do these things at a different pace!

I hope this helps and you feel better soon.

I don’t have allergies but have a medical condition that’s resulted in me being blue lighted to hospital and several in patient stays, which might happen again - so I understand health anxiety and PTSD.

Firstly recognising this is what you have is good. I didn’t and was medicated at one point as began having panic attacks. I’ve since learned to control my health anxiety. I think talking to a therapist/counsellor for yourself would be good and as others have said knowledge is your friend for your son.

GL

My DS, who is now 18 has multiple allergies and there are so many things to worry about. Starting school is always worrying as there is always the worry about children with nut products in their lunchbox.

A must have when we go abroad are allergy cards in the ‘home’ language, explaining all the foods he is allergic to. There are websites where you can choose the language you need and they will translate it. I then make up credit card sized cards and get them laminated.

My son is super careful, but even so all ingredient lists are checked at least 3 times, and as everything has ‘may contain nuts’ it’s not easy especially when they are young. So now as long as there are no nuts in the product we allow it. M&S are tricky as a lost of their items say ‘not suitable for nut allergies’ so we tend to give those a wide berth.

Although it does get easier, you will always worry about them. Now he’s older, I worry about him going out with friends and drinking, which might result in him not being as careful. I always worried about him being left out socially when he got older, as he can’t eat out at many restaurants. So Indian, Chinese and Thai are all out, as it’s just not worth the risk. But his friends are brilliant and as they have all mostly grown up with him they all know about his allergies and 2 of them even asked to be shown how to use his epi-pen in case of an emergency.

My son carries a MedPac everywhere, with his epi-pen, inhalers as well as some antihistamine. They are brilliant and he has one in his school bag and one in his sports bag. The are bright orange and well worth buying.

I hear you. It's so tough. The trauma and constant risk assessing is so draining.

Allergy UK and Anaphylaxis UK are full of helpful information. I also follow the Natasha allergy research Foundation on Facebook.and find their posts and the comments.on them really helpful.

The allergy board on Mumsnet is also really useful.

The website is glitching so I am going to bed, but please know you aren't alone in this

I agree with the above. The other thing I would say though is to practice giving the epipen regularly with your child. You can get a dummy pen for this. It means you can give the epipen “on automatic pilot” in an emergency when you are not able to think straight.

I have a severe peanut allergy and lm in my 40’s now. Places l tend to be on red alert at are Thai, Vietnamese and Cambodian food places as they often use nuts in dishes. Plus as other have said don’t forget about nut oil -someone one told me Five Guys use peanut cooking oil? The good news is most places are way more informed and transparent than they have ever been before. Let’s put it this way, l haven’t had the shrug and “dunno” when l have asked about nuts in food for well over 5 years. I make loads of my own food (partly ease and cost) but do feel able to go to restaurants and get takeaways

I know it must be stressful but you will get through this. I have travelled, gone out drinking, ate at loads of restaurants etc. I haven’t had a proper reaction for over 20 years now. I am that sensitive to it, if a morsel brushes my lip then l can feel it so spit it out immediately and obviously don’t eat anymore. Most of my allergies l grew out of but the peanut one is still there lm pretty sure but not really willing to test!

Just checked and avoid Five Guys like the plague. Their fries are cooked in Peanut oil and there are usually boxes of peanuts sitting out for you to help yourself apparently. For obvious reasons l have never been

Also know that Arachis oil is peanut oil and can be found in some suntan lotions/ toiletries.

Hi @Redmoon245 I really feel for you, am v allergic to peanuts, only tested in my early teens after similar events. If it is just peanuts then the good news is that in the UK at least it is a statutory allergen now so it means all food businesses should be able to tell you what does and does not contain it.

You need to be careful around takeaways, particularly Indian, Chinese, Thai etc. Even Baklava often bulks out with peanuts.

My son has multiple allergies of varying severity so I totally get your concerns, I am some way away from having to send him to school but I'm hoping by that time he will know that he can't just eat anything.

When we go out I do pack foods with me just in case but have found that there are some good chains where there are options. Bill's really impressed me. ASK Italian do a good wheat free gluten free pasta. Even Las Iguanas had alternative options for us both. It may mean ordering from the adult menu sometimes as the kids menu tends to be quite samey in many places.

I agree with suggestions above - I have 2 epi pens for my son and two for me, and carry piriton and anti histamine tables. All you can do is prepare yourself and before you know it you'll be doing the weekly shop without any problems.

Ocado have a dietary profile setting so it will flag foods for you to double check. But yeah avoid M&S goods, they just don't have the right quality control in place. I also stopped buying Aldi chocolate a long time ago for similar reasons but that may have changed.

Nomo is good for nut free chocolate.

The school dinners will probably be nut free (but check). However, you need to train your child not to accept sweets from friends and teachers at school.

I saw something today that said nivea has put almond oil into kids suncream. We have different allergy issues but just posting for awareness.
The natasha allergy foundation are making great progress with policy and worth following

I feel for you, OP. I’ve had an anaphylactic allergy since I was three and it used to cause me huge anxiety. The more I’ve learnt about it, the calmer I’ve become. I think Anaphylaxis UK could help you. They have a helpline, support groups and training for parents. There is lots of info on their website, but I’d talk to them asap.

www.anaphylaxis.org.uk/

It’s so traumatic when your child has an anaphylactic reaction. It will ease and you’ll regain a feeling of some control, but you’ll always be on high alert, which is exhausting. We do eat out in trusted restaurants and go on holiday, but honestly I don’t enjoy it much. It’s hard to trust other people to check properly when a small mistake can mean a life threatening reaction. My daughter has multiple allergies but peanut is her most severe. She’s 17 now. The private immunotherapy treatment available wasn’t suitable for her as her allergy is too severe. Please feel free to pm me if you’d like to chat, it’s hard.

My adult DS will not carry a bag so he goes out with epipens, inhalers, his wallet, his passport (for ID) and his keys all stuffed in his jeans pocket.

I nag and nag and say loads of young men have nice satchels. He ignores me. So, you see you never stop worrying and nagging 😊

My son is allergic to peanuts and we had a very scary moment the other day when we ordered an Indian takeaway. I took one bite of the starter and realised there were whole peanuts in there. I contacted the takeaway and they said that they weren't peanuts in the actual starter but they use them as garnish. How can you trust a menu when it doesn't say that there is a possibility of peanuts?

It's interesting that he said he ate a meal at five guys (he didn't realise he was allergic until he was about 23 and he ate that meal before then). I don't understand how he can be allergic to peanuts but not peanut oil. Can anyone else explain?

He tends to stick to steak and chips in a restaurant if he's unsure. He will always ask if they use peanut oil in the kitchen, though. Most don't.

It has made him a really good cook though and usually instead of going out with friends for a meal he will cook for them.

There is a good supernanny usa episode where she visits a family where the kids have multiple anaphylaxis food allergies. Useful to watch for how she helps the parents cope for you, but also how she gets the older girl to take responsibility for telling the waitress her allergies and impact.

Some peanut oil is purified of peanut protein by heating to a very high temperature that makes the proteins burn up or something, and then they can be filtered out. But not all peanut oil is like that, so you can't really predict when you go to a restaurant which kind it will be.