advice about peanut allergy

[imaginaryfriend]

Hi my dd (5) had an extreme allergic reaction to peanut butter in the sauce of a stew I made yesterday evening. Within 5 minutes of eating one forkful her lips swelled and her breathing became more and more noisy and laboured. She'd had a bit of a cough the day before and we thought she might be having an asthma attack at first (she has quite bad asthma) until we noticed her lips swell and her face redden. We called an ambulance and immediately at the hospital they said she was having anaphylactic reaction to something and gave her steroids, anti-histamines and an adrenaline jab. Within 15 mins of the jab she was breathing much better. She stayed in over night and has been discharged with an epipen, anti-histamines and a follow-up appointment with the allergy team.

I'm so shocked about the suddenness of it. And also that she should suddenly show up with a peanut allergy after having definitely come into contact with nuts in cakes / biscuits over her 5 years. She's never actually sat and eaten a bag of nuts as she doesn't like them but she must have encountered them. So why now?

And I'm left wondering if from now on I should avoid all nuts and all foods with traces of nuts (which she's been eating without a problem for years) ...

If anyone has help / advice / similar stories, please let me know?

I would, without a doubt, avoid all nuts and trace of nuts. It is not worth it.

Allergies and certainly anaphylactic reactions can just come on suddenly like that, it is increased exposure to the allergen that triggers it I think. Unfortunately I can't really advise on specifics as my ds is not annphylactic to anything, but I know that it can happen.

Hugs, it must have been terribly frightening.

I'm still reeling from it to be honest. I only had about 2 hours sleep in the hospital though so I'm also too exhausted to think straight.

hi - sorry you've had such a shock.

My child has a nut allergy and yes, you will be told to avoid all nuts. I'm afraid allergies can develop at any time, no-one understands why. You may also find she tests positive for other things like sesame, lupin, soy or tree nuts. You'll need to see what the doctors say about them but as they often go with nut allergy its worth asking for the tests if they aren't offered.

If there are positive test results you may want to ask for food challenges for anything she has safely eaten before. They shouldn't risk a food challenge where there has been an anaphylactic reaction.

You need to talk to the school and enlist the help of the school nurse. She may be able to get you a practise pen. Ideally you'd have at least 2 epipens - one at home and one at school. We have 4, 2 for home and 2 for school.

Lots of other threads here but if anything worries you just ask.

Thank you for the replies.

We came away from the hospital with 4 epipens and a nurse specialist ran through with us how to use it. I've got to give 2 to the school and keep 2 at home at all times. I'm planning on speaking to the school about it tomorrow.

I've no idea how to avoid traces of nuts in everything. Even in the hospital this morning they gave her wholemeal toast and when she was two bites in I suddenly thought doesn't bread sometimes say 'may have traces of nuts' on it?
(for those of you living with this for a long time I know this will sound naive)

And how about school lunches? Are they guaranteed nut-free? The nurse specialist said that dd had probably reacted to the peanut butter because it was such a concentrated form of peanuts (she's never had peanut butter before). But that things like chocolate muffins which may contain traces of nuts but which she's been able to eat for years should still be ok ... ???

I need some sleep and to get researching on this with a fresher mind. At the moment I can't rid my mind of the sight of dd's face swelling up, changing colour, and her terror at what was happening.

Oh yes and re. allergy testing, the nurse specialist said they couldn't do it immediately in the hospital as dd had had such a severe reaction and also such a lot of medication (2 adrenaline jabs in the end). But she's booked us in to come to the clinic for skin prick tests and a RASP [?] blood test. She said that if some of the things they test for come up with small reactions they usually do a 'challenge' test in which small amounts of the food are given and the response is measured.

It's Guys and St. Thomas' Hospital and they're meant to be pretty good with allergies.

Thanks KM. I'm going to look at your link now.

Would you mind telling me when your ds was diagnosed? And how?

it's a good allergy clinic but they need to train the rest of the staff better No way should you go near a nut trace at the moment.

Some bread does have "may contain" warnings, especially inhouse bakeries. A lot of wrapped loaves don't. I know we've had Hovis, some sainsburys and a few other brands I don't remember at this time of night.

School lunches are often nut free but its always best to speak to the catering staff. They may get a bit paranoid about things like coconut (not a nut) and oil (not considered a problem if its refined - i.e. all cheap oil, not specialty oil). Most large primaries will have dealt with it before and they may be able to ask other parents if they will speak to you.

Difficult areas - ice-cream and chocolate are the worst but check your breakfast cereal too. You'll learn to love nestle, kinnerton and the Bakin Boys.

as far as eating out goes McDonalds used to be completely nut free. It is still largely nut free. Very useful wehn they get to the age where they want to eat out without you.

A wise parent told me I had to think of it like a car accident - you will train your child to avoid it but you can't always prevent it. however if a reaction does hapepn you have your epipens as back-up. Statistically your child is more at risk on the road but it will take a while before you get it in persepctive.

Hi again - hope the school are being helpful for you.

We currently have a Co-op golden wholemeal loaf. Weetabix wheetos, kellogg's riciles and kellogg's optivita raisin oat crisp cereals are in our cupboard. Aero and kit-kat bars are usually safe (check the wraper) as are smarties and chocolate buttons. Advent calendars can be a pain but Kinnerton ones are great and sold in more mainly the expensive brands - vienetta, carte d'or (check as some have almonds but from memory cherry and strawberry are OH), walls vanilla - but again check as not all walls is OK - and magnum.

If you eat much pasta Ragu childrens sauces are Ok too.

Birthday cakes can be a pain as they sometimes have marzipan. Tescos do some that are OK.

I'm afraid I can no longer recommend the Anaphylaxis Campaign as their last newsletter was misleading. IMHO it was irresponsible. However you can go to their meet-ups without being a member. Meeting other parents and seeing that their children are coping is the best reassurance. My child is a teenager now and hence in the highest risk time - you do learn to live with it but its useful to have these boards to sound off when it gets a bit much.

soory - should preview. A line seems to have got lost there. Kinnerton calendars are sold in many supermarkets now. Ice-cream is mainly the expensive brands.

One other warning - commercial mince pies usually have nut warnings. You can buy nut free Christmas puddings if you look hard and Roberton's mincemeat has no nut warning if you don't want to make your own.

It's a bad time of year for the nut allergic but at least it didn't happen Christmas day.

Thanks everyone. I've been really busy today. I kept dd off school, saw the GP to pass on the letter from the hospital and had loads of good advice from her plus another two spare epipens. Then we went to the school who assured me that their kitchen uses no products with even traces of nuts as there are a number of children with serious allergies in the school. So school meals are probably ok. The woman I spoke to at school said that they believe the children at dd's age (5) are more at risk with a packed lunch as they might be tempted to try a bite of a friend's cake / cereal bar etc. whereas with the school meal the staff are all trained and they keep pictures up behind the serving counter of all the children with food allergies.

The GP said that we should, for the time being, avoid anything with even traces of nuts in it until she's had her hospital tests. Then we can work out if it's only peanuts and how strong it is. I've been in the supermarket too and quite daunted as to how much I'll have to change our current diet as regards dd. Fortunately I cook at lot at home and we don't buy in that much pre-made stuff or get to eat out much (too broke!).

It's so strange though to see dd today zipping round everywhere as though nothing happened ... I feel quite traumatised by it.

KM, dd was allergic to eggs and dairy products until she was nearly 2. I remember the day when my mum and I tried dd (7 months I think) on her first teaspoon of yoghurt and her lips swelled up and she started coughing and sneezing. But it passed very quickly. We had allergy tests at hospital and it did show up all kinds of things like fish and nuts to avoid. Then age between 18 months - 2 years she seemed to be fine on the skin prick tests and she's drunk dairy ever since with no problem. She can eat fish now no problem but obviously the nut side has changed or developed ...

Wow - 6 epipens, that's good going. Gps usually moan about the cost. School sounds quite clued up too. Does sound as if a school lunch might be safest.

At 5 she's too young to understand really, but not too young to start training her not to share food.

If the school ever hand out sweets in class, or let other children do so, you may want to give them a "safe treat box" so your child can have something. We used to get some tears when the teacher forgot.

Good luck.

Thanks Tatt. Yes, we're rich in epipens! Fortunately they all have a good shelf life.

The school is a big multi-cultural inner city London primary so I think they're used to all kinds of allergies / diet. I know already that in her class on birthdays children don't bring in sweets or cakes to hand around but something like a party hat or small craft-type thing as it's impossible for the teacher to ensure that all the children are ok with whatever's brought in.

I need to try to find out more diet options though. There's a limit to how long I can serve up pasta and veg!

Tatt, also in terms of what you mentioned about dd being 5. The peculiar thing is that when the anaphylactic reaction began she knew that something was wrong. She'd literally only had one bite of the stew I made before she said she didn't like it because it gave her 'bits in her throat'. I thought she was being fussy and persuaded her to eat a bit more [that memory will fuel my mummy-guilt forever more] then she started trying to gulp down water, splash water on her face and said she wanted to brush her teeth. Then I noticed one side of her lips had ballooned and shortly after her breathing became really noisy.

Despite that she knew it was happening and was scared she now is as though it hasn't happened. She's repeated back to me like a mantra that she mustn't eat any food offered by friends unless mummy or daddy are there and that she must never ever eat nuts. But I don't think she has any idea how serious it could be.

how about meat and two veg ? We eat a lot of that and quite a bit of baked potato and .... Rice is a decent alternative to pasta and cheese on toast is fine if you chose your bread carefully. I do make bread (in a breadmaker) sometimes but only because I have one for other reasons. Sainsburys have plenty of food without nut warnings on them - like their jaffa cakes, much loved by kids!

We've had problems with C&B baked beans. I don't know if that is a nut contamination problem or something else. Other beans (Heinz, sainsburys) have been fine. I'd be a bit wary of lentils.

You can get lists of foods from supermarkets but they change and anyway you can't walk around a supermarket with a wad of paper inches thick. If there are particular meals you eat a lot maybe people here could suggest similar products that are OK? It can seem terrifying at first.

I've done the bad mother bit too - trouble is they can exploit it when young to avoid anything healthy. I used to repeat the story about the boy who cried wolf regulary.

Best to let the seriousness dawn gradually. When they do realise there may be some nightmares.

I'm a vegetarian so we don't tend to do a lot of meat and two veg. I do cook meat for dp and dd when we're all eating together but most weekday evenings it's just me and dd. I think a lot of the things we had pre the anaphylactic episode are probably still ok I just want to be certain.

Dd went back to school today and I was on tenterhooks all day awaiting a phonecall but it all seems to have passed without event. It's a weird position to be in now, to know that there's a disaster potentially around every corner but to never know when to expect it. I have no worries about when she's with us, just when she's elsewhere. She's invited to a party on Saturday and I'm going to stay with her just to be certain she doesn't eat anything untoward. She's happy for me to stay anyway, she hates it if I go at parties.

What do you guys do about party situations?

Wow - that's hard. I've told dd she can't be a vegetarian because I'd find it too hard to get enough fatty acids into her without nuts and fish. Not that she wants to be vegetarian at the moment. However when other parents ask what is safe I say they can always give her cheese sandwich or Heinz tomato soup! Most pizzas are Ok too.

I went to parties until she was old enough to mind. First time I wasn't there I sat in the car in a nearby street so I could get there quickly . A lot depends on the other mother. I always told them, left an epipen and offered to send a safe plate of food so they didn't have to worry about food as well as the party. The only people to take me up on that were guides. I have a practise pen and used to get people to try it out. Now my major worry is that they will be so paranoid they won't eat anything.

Have to go - being thrown off computer.

Dd's not vegetarian, she and dp eat meat. It's just that it's nice for she and I to eat together, the same thing, on nights when it's just the two of us eating. And I've never used nuts in things in any case. It's more now realising how many 'may contain traces of nuts' there are in things we eat like veggie sausages, veggie burgers etc. I can still do my veggie spag bol etc. Dd gets her daily meat intake at school lunchtime I figure. She never eats vegetables at school so I stock up on those when she gets home.

That's a good idea to offer an alternative plate of food at parties. I don't know the mum at all at the party dd's going to at the weekend so I'll definitely stay. And I'd be round the corner in the car (if we had one!!) too if I had to leave her.

I also worry about putting her off food. She's been a picky eater since day one and has been so much more receptive over the last year I don't want to lose that.

Marks & Sencer food is well labelled, you might find burgers/sausages you could both eat. When she has her tests she may test positive for soya because many nut allergic people do. It doesn't always have any clinical significance (i.e. they don't always react) but you may need to have a chat with the consultant about it.

It is hard. Mine can be faddy about food and I'd like to get her eating a wider range of foods. It does feel like russian roulette trying something new though. Some gps/ consultants will refer you to a dietican if you'd like to try it.

By the way, the Evelina Children's Hospital at Guy's and St. Thomas's are doing a study into peanut allergy and are looking for babies aged between 4 months and 11 months who have been diagnosed with eczema or egg allergy to participate:

www.leapstudy.co.uk/

imaginaryfriend-sorry to hear about your dd's new allergy.

It must have been terrifying .

Tatt is brilliant with advice here,mumsnet was so helpful to me when ds was diagnosed .

May I suggest a medic-alert bracelet for your dd.
Ds5y has worn one since he was 2.5 .It is really useful for encouraging him to talk to people and other kids about his allergies.

It feels very scary and overwhelming at the beginning but things will get easier and you will feel more secure about your dd.

She's at the right age to start learning about it herself which is really vital.

We attended a parent's workshop run by the anaphylaxis campaign which was really really helpful