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Practical tips for parent of newly diagnosed nut allergic ds aged 2 please

(24 Posts)
SallRight Mon 13-May-13 15:43:42

Hi
I have done a lot of reading and met with two consultants who have advised me but I still feel so anxious and worried. Ds had swollen face and eyes reaction to a tiny piece of walnut a few months ago when we were on holiday in spain and was treated in a&e by an injection of i think steroid and has since tested positive for walnut and pecan allergy. We carry antihistamines but no epi pen has been prescribed.

We are now on holiday in France and dh would love to give tastes of local foods eg croissant.

It was me who saw the consultant with ds and I don't feel very confident to be able to give foods which have been uncovered in or produced in bakeries/patisseries/sandwich shops where I can see nuts in other products even though shop assistants have read my allergy note and advised that the baguette / sandwich for example is fine.

Today we unexpectedly ended up eating from a sandwich shop and ds declined the preprepaired sandwich I had brought from the apartment for him and felt very left out when I didn't feel I could give him what we had got. I will try hard to avoid such a situation again.

My anxiety is not helped by DH's saying 'well just give him a little taste and see how he is before giving more in a while'.

In the uk if using packaged foods I do allow foods which say 'may contain traces of nuts' sometimes when I consider it fairly low risk as the consultants advised I should but I still feel I am having to make a risk assessment every time without any training.

I would dearly appreciate hearing how you deal with this...

Thanks in advance

janey223 Mon 13-May-13 16:23:25

I asses the risk and how likely cross contamination would be, if its sat next to something with walnuts on it I wouldn't, iykwim ?

If the other sandwiches didn't contain walnuts or pecans I'd risk as they would be unlikely to have them nearby when prepping sandwiches.

Honestly though, when we eat out i tend to go with chains who have all their info published but my DS has multiple allergies.

SallRight Mon 13-May-13 19:29:17

Thanks, so you are doing similar to me, essentially risk assessing each time. Do you find you get stressed by it?

Do you give things marked as 'may contain' where the allergen is not listed in the ingredients?

Tried to get a meal in a supermarket cafe the other day and the kids menu items all had nut warnings of one sort or another, even the fish fingers - not suitable for peanut allergy sufferers. Not a clue why. But consultant said to behave as though all nuts were the problem not just the actual ones incase of cross contamination.

Shallishanti Mon 13-May-13 19:39:00

I'd be asking for an epipen, it will give you peace of mind. I agree about considering all nuts a problem, esp when talking to friends/family as otherwise it can cause confusion. In future, if you are going abroad, I'd get a native speaker to check what phrases you need to use to ecplain the allergy, as I've found 'nuts' can be translated as different things iin different languages (eg I think in French, people may understand only hazelnuts and not other nuts)
On the plus side, my dd is now a grown up and once diagnosed never had a serious reaction again.

babybarrister Mon 13-May-13 19:50:52

have a look at the Anaphylaxis Campaign website - it has a lot of practical information and they also offer workshops for parents

SallRight Mon 13-May-13 20:31:03

The workshops sound like a good idea. I really feel I need a clear framework to apply that others can apply too and see me applying. They don't easily accept my risk assessment.

Dinner tonight didn't go well. for desert we had yoghurt and chocolate for a treat -I had buttons for ds which are fine and his favourite but he wanted the grown ups chocolate which said 'may contain nuts' and I considered moderate to high risk so explained the buttons were for him and he said 'my sad mummy' and started crying. So I put the adults chocolate away and we all had a mini pack of buttons instead.

I feel family think I am over anxious and don't want me to limit what they eat but then think I do a rubbish job when they see ds disappointed when he wants to share.

I think I maybe need to take control of all the catering when we are all together and then everyone can have the same without comment or exclusion. As it stands I feel like never eating out again.

I realise many of you have much more complex allergies to manage and I am grateful for your advice.

MegBusset Mon 13-May-13 20:40:33

DS1 is allergic to peanuts among other things (eggs, sesame, pulses). I do give him things that say 'may contain' as long as they're not in the ingredients list; I always take Piriton with us when we're going out so I feel safer about letting him eat out.

If we are having treats like chocolate/cake at home I make sure it's something we can all have, but he has had to get used to the fact that he can't always have the same as everyone else at parties, restaurants etc. He is 6 now so is used to it and I do usually keep emergency Haribo in my pockets to avoid catastrophe!

MegBusset Mon 13-May-13 20:42:19

And we do tend to eat out at chains where you can check allergen lists. Pizza Express are v good for this, have found staff at Wagamama very helpful too.

ukey Mon 13-May-13 22:28:00

I find it best to avoid all may contain traces of, not suitable for, etc Would not eat out of a bakery etc

When eating out always check places in advance, also always carry safe treats.

Does ur son have any other issues such as asthma, eczema etc?

If ur interested there is a brilliant facebook group called

uk parents of kids with nut allergy peanuts

Piffpaffpoff Mon 13-May-13 22:45:18

DS (6) is diagnosed as allergic to all nuts. We carry an Epipen, the consultant said the levels meant we could probably manage without one but I wanted one for my own peace of mind. DS has only had one bad reaction which was to Nutella, I took him to A&E and that got us the referral that led to his diagnosis. Since then we've only had one very mild reaction when he ate a Bubbly bar from Aldi - an chunky chocolate Aero lookalike which unexpectedly has hazelnuts in it. I didnt check the label until afterwards, but it does say 'contains hazelnuts'. I think Milka choc does too.

Anywar, because we've only had these two incidents, only one of which was 'serious', I have been relaxed about 'may contain traces of nuts' and 'from a factory where nuts are used' products so far, but that is only because they've been fine so far. I suspect I am relaxed about this because I have the Epipen too.

ukey Mon 13-May-13 22:50:21

you never know how severe a reaction is going to be, though I know everyone has different comfort levels.

Piffpaffpoff Mon 13-May-13 22:51:39

That last bit should say 'I suspect I am more relaxed...'. I'm never fully relaxed about it obviously...

ukey Mon 13-May-13 22:54:09

best to be safe in my opinion and not play Russian roulette I don't want to have to chance using the epi pen, but obviously always have it as a back up just in case.

Piffpaffpoff Mon 13-May-13 22:55:36

Yes Ukey, it's about finding what limits you are comfortable with and then setting your own boundaries. It's so hard - I may sound a wee bit gung-ho about it but I'm so not. Every so often I have a wee freak-out about it and what could happen to DS, but I work very hard not to freak him out while making him aware of his responsibilities to let people know what he can't eat.

ukey Mon 13-May-13 23:05:16

I think its easier to avoid all may contain, as then u are eliminating any risk, and also makes it clear to everyone else whats ok and whats not, its difficult enough for ppl to understand without having the added complication of some may contains be ok and others not. Esp for ur DS to understand. Wee one is 7 so just a little older and is very good at label reading etc and knows to avoid anything that has may contain.

SallRight Tue 14-May-13 14:45:08

ukey. I see where you are coming from with avoiding all the 'may contains' as well perhaps that would make the rules simpler and reduce the number of risk assessments I am forced to do. I think I will try it that way for the time being and see how we get on.

I think this may feel very restricting but I understand from the consultant that there is a change to food labelling due in a couple of years and maybe bottom covering vague 'may contains' will no longer be allowed.

I will seek out the Facebook group, I am pretty old and out of date new to the whole Facebook thing.

ukey Tue 14-May-13 16:40:38

look forward to seeing you in the group smile

Its very daunting at first, and everything you look it seems to have 'may contain' or something similar on it.

It does get easier and there are actually more and more options becoming available

e.g

cadburys have recently expanded their nut safe range

fudge, curly wurly, crunchie, twirl, flake, buttons.

cakes are very high risk, and wld not buy from a bakery but again there are a lot of safe options available, fab bakin boys mini cupcakes wld be ideal for ur wee one due to size of them and them being individually wrapped. They do loads of other products too.

Just love food company do a nice selection of birthday cakes etc.

janey223 Tue 14-May-13 18:04:43

You can always contact companies to ask about what their 'may contain' means and assess risk from there (is it on the same line or is it at the other end of the factory?). You'll find your balance if what you will and won't try, some companies put may contain on everything and it drives me mad!

ukey Tue 14-May-13 18:34:04

if you are avoiding all nuts due to a risk of cross contamination, then shouldn't you also avoid any other foods that also have a risk of cross contamination? there for u would avoid may contain. I realize on holidays and out and about its hard to find foods that are guaranteed to be nut free. But would you eat something that was made in the same environment as weed killer or some other nasty substance? You would have to make sure whoever was preparing the food understood the risk of cross contamination, on surfaces, untensils, shared equipment, clothes, hands etc etc.

trwyn Mon 20-May-13 20:09:17

Agree that risking 'may contain' is a bit of Russian Roulette. The problem you have is that you can't easily identify whether the risk is real or not, and they can change factories or manufacturing processes without notice. More info on peanutallergyuk.co.uk/may-contain-nuts/ [DOI: I own and run that site]

babybarrister Mon 20-May-13 21:40:52

Everyone needs to be aware that at the moment the phrases "may contain" etc are absolutely meaningless and give no indication at all of any likely level of contamination, they merely reflect cautious advice from insurers ....

The fact also that some products indicate that they are made in a factory which also uses nuts equally does not mean that products that say nothing are not made in factories which use nuts etc etc

The Anaphylaxis Campaign is though campaigning for there to be uniformity in these warnings so that they will actually mean something to consumers smile

trwyn Tue 21-May-13 12:21:45

That said, if a manufacturer goes out of their way to warn people that their products may be subject to contamination, I would think they would be in a rather better position if someone did have a reaction.

The labelling guidelines are due to be updated Dec 2014 and may contain statements will remain but the 'allergy information' box will go - rather allergens will be highlighted (eg picked out in bold) in the ingredients list.

babybarrister Tue 21-May-13 22:48:29

there are plans afoot though to have standards for cross contamination.

trwyn Tue 21-May-13 23:34:11

Are there? Is this part of the changes to legislation or something else?

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