Anaphylaxis: how vigilant?

[camillamacaulay]

I'd really welcome some advice from other parents whose DCs are anaphylactic. My 14 month old DD had a very scary anaphylactic reaction a month ago following lunch out in a cafe. Tests at the hospital have revealed she's allergic to nuts, eggs and sesame. We think she must have reacted to a very small trace of nuts - she was eating pasta in a tomato sauce at the time - but can't be sure. We're a very allergic family, although not anaphylactic, so hadn't given her any of these foods directly.

I'm still not over the shock of it all. I don't want to take her out to any restaurants or give her any food that says it's been made in factories where nuts are handled - which seems to be practically everything. But I'm wondering if this is being too risk averse. I'm getting a bit of pressure from my family to relax a little. I didn't think to ask these questions at our allergy clinic appointment. I was too upset about the thought of it happening again and using an epipen, and our next appointment is not till September, so I'd really welcome advice from others who've adjusted to all this. e.g. Do you eat out in restaurants? Take your own food? Avoid everything that says it may contain traces of nuts?

My DS whos 6 is anaylphalatic to some unknown allergen. I understand exactly what you mean and empathise fully. It is worrying but I know from my experience you do relax a little but yes you are on constant alert. I don't have any experience of food allergy (except tomato ketchup which is easy to avoid) and I'm sure someone who does will be along shortly.

But I would say it is best to take your own food to be on the safe side.

Poor you. It is horrible when your child has an unexpected allergic reaction and for it to be anaphylactic is really scary.

My ds1 is allergic to peanuts (amongst other things). He has what our allergy clinic calls 'typical type I reactions' (hives, burning sensation in mouth/throat and vomiting) but thankfully has never gone into full anaphalaxis. Nevertheless the advice we have always been given at the pediatric allergy clinic is to avoid anything that 'may contain traces of nuts' or that has been made on machinery that previously been used to make products containing nuts, or just states 'made in a factory where nuts are used.

I do let him have things that state that nuts are present in the factory but only in another area - that is my choice.

I am the only mum I know with a nut allergic child who is as strict as this - I know several others and their children do eat 'may contains' ( I also know 3 nut allergic adults and they all eat at least some foods that may contain traces of nuts). But, at the end of the day, it is what I feel comfortable with and what I feel is best for ds1. You just have to decide what is right for you and your family and then tell your relatives that that is the way it is going to be.

As for the eating out well we do a lot less of it than we would otherwise have done but we do do it. I have built up a repertoire of safe eating places (mostly based on how willing/able they are to supply information about what is in their food) and safe dishes - in our case fish and chips, roast dinners (no gravy), jacket potato and beans - stuff like that. Puddings are more of a problem. I always carry food/treats in case he gets hungry and we can't find anything suitable.

My 7yo DS is allergic to dairy - they class it as anaphylaxis because he has a systemic reaction (breathing problems, hives and vomiting) but he has never gone into anaphylactic shock.

I have always been guided by the specialist (based on blood tests) in terms of how careful to be. Initially we were told not to give anything saying 'may contain traces' or 'handled in a factory' etc, but later we were told traces were ok (based on milk challenge).

As for eating out, we aren't in the UK and the allergy info is much less, but basically we always take his food with us, and he doesn't eat out of the house unless we have his allergy medication. In our case we know that hot chips should be ok, or a plate of plain pasta with olive oil (and we explain about contamination).

Personally, if she reacted to a very small trace I would go down the very strict exclusion route until you have confirmation that you don't need to. It won't kill her (or you) to have to cope with that (especially at her young age), but there is a risk of it if you don't. As for dealing with family, maybe look up stuff on allergy websites about the possible consequences (ie death!) and give it to them so they realise the possible severity of the situation.

Could you perhaps ring the hospital and seek clarification?

Hello, me again. Just to add/agree with Weta - no allegy medicine (in your case epipen) = no food eaten.

Also - just a thought - was there egg in the pasta your dd ate?

God it's crap isn't it! How can a mum relax when she's seen her child go into anaphylaxis - how can you ever relax!?!?!
I think you do have to avoid all 'traces of and manufactured in' until you know more and your child grows - DS grew out of his egg and sesame allergy.
My DS is anaphylactically allergic and unless people (esp DH and MILs!) see the reaction they can't really understand why I stress so much over my son's food. He's now 8 and life is calmer, we're (I'm) more used to how I need to operate to keep him safe. I now carry food for him - that way it's no biggie and it sems less fuss is created to concern my son, me or those concerned others. I tend to get the family sat down and then go and ask the allergen questions alone which again takes the edge off it. And - I suppose I've chilled out on chips which sorts most restaurants out.
BTW - my biggest fear was having to use the epi-pen - but having bitten that bullet it was absolutely OK and, in fact empowering to know that I have my own magic wand which brings my son back to me; I don't have to wait for an ambulance etc.
I do hope it gets easier for you and you can find some coping techniques.

Thanks all for your really helpful advice and reassurance. I'm carrying her epipen at all times and she has one at nursery too. I think you're all right that the risk is just not worth taking at the moment - especially as we don't know exactly what caused it. (The pasta wasn't egg pasta - or that's what they said when we went back to ask but I guess I don't know for sure) It's a lot less hassle to be strict on all 'may contain traces' stuff and take my own food than to sit panicking over every mouthful. This has made me think though that I need to make sure nursery are taking the same approach. They've been really helpful so far so hopefully not a problem.

Topiarygirl - I too am really scared about having to use the epi-pen. The sight and thought of it made me just freeze at our hospital appointment. But I like the magic wand analagy!