Nut allergy- 'may contain traces' and eating at other people's houses

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Hi,

My son (4) has just been diagnosed with nut allergy (following skin prick test after an incident) and asthma. I guess I kind of feel like I've been waiting for this diagnosis for a while now so it isn't a shock.

The advice we've been given by the hospital is that most foods that say 'may contain traces of nuts' will probably be safe and there is a low risk associated with these. The foods he needs to avoid are those that actually contain nuts. Does this chime with what others have heard?

Also, I am wondering a lot about how people handle their allergic child eating at other people's houses or events ? It will be a while before he is ever in a setting where he is being looked after by someone who isn't trained in Epi-pens and so on - the school will be good about it, I'm sure, and other than that it should be me and family and close friends. But what about when we go round to someone's house? Or to a birthday party? Do we just never go to these things? Do I have to just tell him over and over again not to take any food without asking me first (yes, but I can't really expect obedience at 4)? Do I always take our own food? Shall I get one of those t-shirts that says 'DON'T FEED ME!' or something? Do I have to hover? I wonder how others handle it at this age.

Thanks!

My ds is only allergic to peanuts afaik, although I am not giving him any nuts until he has further tests as he had a mystery reaction a few months ago to either peanut or another nut.

At the moment I am trying to avoid all 'may contain traces' foods as my nieces allergist said that she had a higher chance of outgrowing her peanut allergy if she avoided all traces of peanut.

I let him have foods that have no nuts in the ingredients and no nuts in the factory but 'cannot guarantee nut free' unless they contain something that could have been processed in a peanut factory such as sunflower seeds.

At parties etc I tell people before we go that he is nut allergic so that they can keep packaging etc for me to look at and I take something with me that I know he can have. I generally have some chocolate or something in my bag so if we go to someones house and they are all having a 'may contain traces' pudding then he can have something too.

My ds is 4 and he doesn't take food without asking but I do hover if there is a crowd. I can say to him at a party 'you can have a and b but not c because c has peanuts in it' and he listens.

ds doesn't have an epipen but I always carry piriton with me. I'm not confident enough to leave him at a party unless there was a designated person looking out for him rather than the frazzled hostess but I would leave him with piriton at a friends house if there was only 2-3 other dcs there.

DS1 (5) has a serious dairy allergy, so I don't know about the nuts. He's ok now on traces of dairy (though for some reason reacted on New Year's Eve to crisps that said they only had traces). He's had it since he was a baby.

By 4 I found that he was already very good at understanding the problems (especially as he had 2 incidents at age 3.5 so he had a good memory of how awful it was). He never eats anything without asking me first.

If he goes to play at someone's house I talk to the parents about it and leave medication plus my phone number and a sheet explaining what to do in case of a reaction. I provide all food and ask that they don't give him anything else (although have relaxed a bit now he can communicate well and it's fine for him to have fruit/bread). I always provide more food than I think he'll need so that he's not tempted to eat anything else.

Birthday parties I do the same, always provide food for him. It's easier for me as I live in France and the parties only involve cake and sweets, but in the UK I would ask what the others were having and provide similar for him. I do leave him (and have since he was 4) but again the parties here usually have about 8 kids, max he's been to is 15.

I guess it depends on the kind of reaction your child will have - I know ours is serious, hence providing all food myself, but I also know it takes half an hour to kick in so there is time to deal with it.

I make a big effort to ensure he can take part in the same activities as other children, although it often involves a lot of extra work for me in terms of preparing food. I hate eating out and had a horrible experience recently where we went to a circus with several other kids and their parents and I underestimated how much junk the other kids would be given in a day and didn't have enough to compensate. So now I would always take some extra sweets and biscuits in my bag just in case.

think it depends on who you speak, and how severe a reaction it was, what advice you get. We saw an allergy consultant, my child has potentially anaphylactic reactions and we were advised not to risk "may contain". So we generally don't - even the bottles of water (although that's more not giving our hard earned money to companies that back cover).

As an example Cadbury clean their machinery after making chocolate with nuts in by making other chocolate and labelling it "may contain" A whole nut has been found in what was probably one of the first bars made after they stopped the production run of fruit and nut. The bars that were made in the 100th production run probably didn't have any nut traces in it. Most of the time such products will not cause serious harm but sometimes they will.

I would never trust a school unless you had been to their epipen training. Any training they have been given is often years ago and forgotten. Gat a trainer pen and make sure anyone your child is left with has a practise with it. We would always offer either to take a plate to parties or to check the food. I stayed in or nearby at parties until about 8.

How bad was the incident/ what were their test results like?

Hi. I am a mum of kids with no allergies, but several of their friends have. I want to welcome those kids into my home the same as any other friends, and I would always appreciate really clear guidance from parents about food allergies, to stop me worrying and, more imprtantly, putting the child in danger.

What about a simple (laminated) card to give to hostesss etc. Give details of what cannot be eaten (including names that it may appear as on packaging) and ideas for 'safe' meals.
Also add emergency contacts. Maybe give it to the host a couple of days before the party, so they can plan a suitable snack/meal. Oftentimes, a suitable meal (spaghetti bolognaise?) is OK for everyone to eat, rather than your child having to be different, with a separate meal.

Hope this helps, and good luck!

Good idea LSITD. People do tend to say tell me what they can eat, not what they can't. To me that seemed harder to deal with - because there is a LOT of food that people with allergies can eat, but also a lot they can't - more than you can put easily on a card.

I tend to suggest home cooked meat and 2 veg are fine (if you are careful with gravy that even deals with coeliacs). My child loves Heinz tomato soup or baked potato with cheese or beans but the beans can't be C&B. Some nut allergic people can't have beans and obviously those with dairy allergy can't have the cheese.

You do have to be careful sometimes - we asked for Jaffa Cakes as a "safe" food at a party and the hostess bought a supermarket version. That would have been OK if it was Sainsburys (nut and dairy free) but it was one of the supermarket's with a nut warning on their brand

Anytime you want help put a menu up here and we'll tell you any possible pitfalls.

i have nut allergy with an epipen pen to use.
I have had this problem since i was a teenager....so a good 20 years.
It has been interesting watching all the foods i have eaten for decades slowly all get that 'get out/ cover our arse clause' added on to the packaging.
The advice from the hospital is true yes...but i am a grownup, if i had a child with my problem i would feel the same as you do now. i personally do risk many 'may contain' obviously...mainly because i have been eating the same foods for ages.I would feel differently if coming to it from your position (as a mum) and also coming to it afresh.
I have only had 2 unidentified anaphalactic episodes since i was 18 (i'm 42 now)...and one was from eating in a restaurant....and another at a barbeque where i'm guessing someone used the same pan for cooking my chicken (which i had taken) as something else containing nuts
At a birthday party i guessing that you may want to stay a bit or even probably for the whole session while he is little....to find out about the food ..and to make sure the person in charge knows. He will get very used to telling people what he can't eat as he gets older...and i have to say that most people are very good even as an adult. I would imagine most are supersensitive to it while looking after someone elses child.
Good luck.

My ds is 9, and I have known that he was allergic to nuts for nearly all his life (he got some of my peanut butter toast when he was about 10 months, just put it to his lips and they exploded)

Anyways, he has had skin prick tests which have confirmed, then re-confirmed the allergy.

He was due to go in for a challenge, but we have put it off until he felt a bit braver about it...

Anyways, the other night (about a year and a half after his last skin-prick test) he had a donut. The other donuts were pink with white sprinkles - this one was brown with what looked like regular fudge sprinkles.

Except they weren't - they were nuts
Luckily my ds had just put it in his mouth when I tried it, realised it tasted an awful lot like a peanut, and told him to spit it out.
He didn't react.
I am so so hoping that he has outgrown his allergy. I have called about the challenge, and ds feels really confident about it now.

BUT, when he was smaller, I would go to parties and hover a bit. I stopped for awhile, then he very nearly had a satay chicken skewer. He is quite picky, which I think has been good, as he tends to only go for "safe" foods. He has always been very good about policing himself (which is why the challenge was scary for him).

I have found that people, when told about the allergy are very vigilant. I do let him have "May contain traces of nut" foods, as his allergy was not huge. However, he knows what it feels like when he has had a bit of peanut, so if we have something new, he nibbles a bit, waits and sees if he has a reaction.

Good Luck!

Thanks so much everyone, this is really helpful. Everyone keeps saying that they just want to know what they can do to help, so that is really reassuring. I can give the treatment plan from the doctor to the hostess (or my version of it) and making positive suggestions is a really good idea. I don't think I would leave him for a good few years yey.

Hi my DS was recently diagnosed with a nut allergy and I am very new to all of this. Since then we have been to two parties and I told everyone about his allergy and everyone was really good and no one brought any nut containing foods. However, I did spend the whole time hovering around him in case he reacted. Since his initial reaction he has only had one minor reaction in which he had a rash which went away with piriton. This was from eating wheaten bread which had no nut warning but did say may contain traces of sesame seeds so not sure if that set him off.

The only thing I have given him since his first reaction that may contain traces were some chocolate fingers which he had previously eaten without any effects. I don't give him anything new that he has not had before which may contain traces. My Dr also said not to give anything that may contain traces.

He hasn't had any problems when we've been out to eat so far including at asian restaurants as long as we've avoided anything that obviously contains nuts. Also if something looks complicated I don't give it to him - just simple food with few ingredients.

We've also been away on holiday and again everything was fine. He had some ice cream in an ice cream shop and was ok - but the worry of cross contamination was too much for me so I won't be doing that again.

I have epi pens which I carry around at all times as well as piriton so I do feel a lot more secure about eating out but the first few times were very stressful.

jimmyjammys quite a few people with nut allergy also have sesame allergy. Next time you go for testing it is worth having tests for sesame, pine nut and lupine. If tests are positive but he hasn't reacted you could ask for challenge tests as a positive test doesn't always mean an allergy.

We don't eat in asian restaurants. I've seen stories from people who have, asked about the allergy and were still given food with nut.

It's very hard to deal with parties and eating at other people's houses. My friends have got quite used to it now and tend to save packaging for me to check the labels.

I find it hard when people say "Tell me what she can have" - because I can't until I have read the label on that actual product. It's hard to get people to understand that even though it was fine last week it might not be fine this week.

My dd has become anxious and likes to take her own food to parties and I always explain to the hostess, she will never eat cake unless she has watched me make it at home. She is 6 and would NEVER eat food without checking.

Yeah agree it is very hard. My dd is 7 and has the peanut allergy amongst loads of other multiple allergies. I attend all parties with her and she takes her own food. I worry over friends offering her back to their houses. They want to cook for her and I find this a worry. I worry over their cooking utensels,trays ect,you never know whats been cooked on them previously. I rather always her have a packed lunch but not yet been brave enough to send her anywhere alone unless with school. I give nothing with trace or may contain warnings on. I also tend to find people quickly say,'oh we dont eat nuts' but are oblivious to what nuts are in.

I think you can never be to careful if the result could be an anaphylactic attack. Before DD was desensitized we never ever took a risk. Of friends were wonderful, ever careful if I am honest bless them and we did packed lunch for school and trips etc.

Sorry, just reread and this is really flat and dull advice, my smallest DD has just discovered the terrible twos at 21 months and I am shattered.... please tell me she will one day be a lovely child again????

We found that teaching DD to 'cook' her own cakes and biscuits (obviously heavily supervised) she took on her own sense of responsibility. When she went to a birthday party she would bake the birthday child a special cake as a gift and could then share the 'safe' food.

4 is very young, there is so much hope on the horizon now (now DD is evidence of that)

TATT - I love the fact that you always give such great balanced advise. I know this sounds like I am really thick but what is Lupine in? My friends DD keeps getting a face rash after baked beans and maybe lentils, she knows my history with peanuts and I really don't know what to tell her?

I had to post as I am a 40 year old who had a nut and fish allergy when it was as rare as rockinghorse poop. This was alongside acute eczema and asthma. By the time I was 4 my mum had stopped hiding fish in stuff cos she thought I was being fussy and on my first day at school I had a huge label on at lunch time 'no fish or nuts' Other than that my parents never wrapped me in cottom wool and for that I am very grateful. In those days nothing had the produced in factory with nuts labels. I have never, not once found a trace of nut anywhere where it shouldnt have been and ladies if there was I would know. I think there is a very fine balancing line here and we are going to bring kids up who are scared of their own shadows. I am writing this seeing hands thrown up in horror but I speak from experience in coping with complex allergies.

BBF thanks . Lupine is at the moment pretty rare here, it's more common in France where it is in quite a lot of flour apparently. It is being added to the EU allergen list, if it hasn't already been added. Think I've seen it once on a label here but some companies add things before being legally required to do so. My child tested positive for it so when in France we stuck to labelled bread where we could.
I would suggest your friend ask for a referral for testing as that sounds to me like a problem with lentils. My child has reacted to C&B baked beans (but not other brands) and to lentils. If your friend's child hasn't yet had peanut might be best to get a test first as lentil and peanut are both legumes. Or try it with you there as you have your epipens for a bit longer.

mermaidspurse when you were small peanut wasn't added to as many foods as it is now. Maybe you've outgrown your allergy or perhaps you've been lucky. Not everyone wants to entrust their child to luck if they don't have to. Your parents took the best care they could but they didn't have a choice, now we do. Most of us are happier to take risks ourselves than to risk our children.

My child has been brought up not eating "may contain" products. Hasn't stopped them going to parties (although they may get asked less), sleepovers, on school trips, foreign holidays or on a DfE expedition. Maybe they are risk averse but they don't see their allergies as a problem yet.

Many thanks Tatt. I am stuck between wanting to give her the right advise and now wanting to scare the living bejesus out of her!

I have suggested a month exclusion from lentils and baked beans to see if the rash goes completely. If it does and then reappears with the reintroduction of either then I will def advise she gets tested. My DD is not great with soya (again, legume family) but seems ok with peas and baked beans. I am not even sure if we have tried lentils because of the peanut allergy, I would not want to raise the allergen bar, especially as her trial is going so well. We are entering our third month of 5 peanuts a day - who'd of thought it eh?

yeah it's difficult. But if she lives near you might be best to have some testing soon so if she did have a peanut problem then she could try for the same programme you are in? I'm assuming the child is OK with tomato and its not the tomato sauce on the baked beans/ possibly lentils?

Allergies are peculiar. We have no problem with peas and beans but do with nuts, lentils and to some extent soy. As your dd was OK with tree nuts before peanut it sounds hopeful that she's going to be fine with soy too although I know what you mean about the allergen bar. Time enough when you have the other tests done.

My daughter is driving me mad for non allergy issues at the moment! Life has sucked recently.

I actually really like the laminated card idea further up. DS is 6 and always off to various places on his own (Beavers, friends houses, football team days out etc etc) and sometimes you are never sure whether someone might forget or not quite take it in - and I sometimes rely on DSs good sense rather than anything else.

I might try the card thing ! Thank you !

I have a son with quite a few allergies, and we never eat any food with a 'may contain'.
Sometimes we come across a new food that doenst have a warning,for e.g thorntons brought out some square chocolate bars that didnt have a warning.
I rang them up and double checked and found out that three different bars were ok!

I have always encouraged my son to e-mail, or I phone to ask questions about a product.

Not all foods labeled with 'may contain' are a cop out. In fact work behind the scenes is trying to stop this practice. Legally they have to put a reason down to explain why their product is labelled may contain.

If you are eating a may contain food assuming that it is safe, without contacting the manufacturers, you are not making an informed choice.
You are taking a risk, and that risk level is unknown with every bite, every time.

I have never been a great fan of russion roulette.

we did learn this lesson the hard way, after our son had reactions at a young age to may contain food.

thankfully we were lucky.

Food since my childhood has changed dramatically.
I grew up with garden veg , and my grandad killing his chickens for our sunday dinner.

I remember the excitement over instant apple crumble and custard , with the 'just add water' instructions, and who can forget vesta currys?

That was just the start of the major changes in our food. Nothing is simple anymore, and ingrediants are a mile long in very small print.

life has become harder for those with severe allergies in the last 40 years.
At least, most people today have heard of severe allergy. 40 years ago, it was unheard of.

Hey Tatt, sorry to hear you and your DD are having a really hard time at the mo, I do sympathise totally.

My friends DD seems fine with tomato and I have suggested a holiday from lentils and beans to see where she ends up at. I have prompted the idea of tests but I guess we will see what happens after her 'legume holiday'.

Hope you and DD have some happy times soon.