10 key things we learned in the first year after anaphylaxis

As we approach the first anniversary of my toddler son’s anaphylactic reaction to a peanut cookie, I thought it would be a good time to take stock and think about all the things we’ve had to learn since his allergy diagnosis. If you are reading this as the parent of a young child recently diagnosed with a life threatening peanut or nut allergy, I hope you find this useful.

1. How to read food labels

When my son (D) was discharged from hospital, we faced two immediate challenges:

  1. To make sure our home was peanut and tree nut free.
  2. To figure out what foods to buy, that he could safely eat.

The hospital doctors had advised us:

  • To focus on the ingredients section of the food label. In the UK and EU, the ingredients list on pre-packaged food must be accurate. If a food contains even a tiny amount of peanut (for example), then peanut should be listed in the ingredients. [Update: for more information, see Deciphering UK food allergen labelling law.]
  • That we could ignore “may contain traces of nuts” wording.

However, it seems that experts’ views differ regarding whether it is necessary to avoid “may contain” foods. I saw a statistic recently which said that 7% of food items that say “may contain” on the product label can have detectable amounts of the ingredient (@asthmabuddy Feb 22).

Dr Andrew Clark, in a 2010 Q&A piece for Mumsnet said of “may contain” labels:

“They just signify a risk, which is real but very small and that risk is difficult to quantify because the food industry just doesn’t know how much nut accidentally gets into foods. However, you can make some sense of it by thinking that some foods, eg chocolate, biscuits, cakes and bread are higher risk, as these are often made in nut-containing versions. Other foods with ‘traces’ labels on, such as orange juice are clearly lower risk.”

That’s the approach we have now adopted. We check the ingredients list and anything containing peanuts or nuts is a clear no-no. We sometimes do give D “lower risk” foods which are labelled “Recipe: No nuts. Ingredients: Cannot guarantee nut free.”, but we avoid “higher risk” products with warning wording.

For something which should be straightforward, deciphering allergen advisory labelling is fraught with confusion. The Food Standards Agency are currently investigating this issue and I look forward to the results of their survey on allergen advisory labelling, expected in autumn 2013.

2. How to recognise anaphylaxis

The allergy nurse at the hospital talked us through the symptoms of an allergic reaction, and how to differentiate between a mild reaction and a severe reaction (anaphylaxis). We were given a leaflet which advises that, if peanut is accidentally eaten and any of the following symptoms are present, you should dial 999 and state “anaphylaxis”:

“Difficulty breathing (wheezing, noisy breathing, blue colour)
Swelling in the throat (noisy breathing, drooling)
Feeling faint or dizzy, looking very pale…”

For more information, see:

3. How to administer an EpiPen

Before D was discharged from hospital, we were given training on how to administer an EpiPen (a type of epinephrine (adrenaline) auto-injector). We were advised to practice with a trainer pen each month (which are available for free – you just pay for postage and packing – from the EpiPen website).

At around seven weeks after his anaphylactic reaction, D had an asthma attack brought on by croup. Partly due to the fact that we had reintroduced soya (on doctor’s advice) that afternoon, we mistook it for an anaphylactic reaction and gave him the EpiPen. It turned out to be a false alarm. However, at least we are now confident that we can administer the EpiPen and know the drill in an emergency.

For more information on the current style of EpiPen in the UK, including links to demonstration videos, see The new style EpiPens.

4. How to deal with the emotional repercussions of anaphylaxis

D’s anaphylactic reaction certainly took an emotional toll on D, Ian and I and other family members.

How it affected D

When D came out of hospital, he was suddenly fearful of:

  • Ambulances.
  • Nurses and paramedics in uniform.
  • Sleeping in a room by himself.

For more details, see Anaphylaxis aftermath: what happened once our toddler came home from hospital.

As he was too young (at 20 months) to understand why he had been in hospital, he doesn’t have any food fears as a result. However, on the flip side, the experience hasn’t left him with any awareness of his allergy either.

How it affected Ian and I

Our anxiety levels certainly increased following his peanut allergy diagnosis. Everyday activities which used to be enjoyable (for example, eating out, playdates, playgroups) can now be extremely stressful. It is getting better as time goes on and I have, for example, found playgroups where I feel relatively safe, both on account of the snacks being served and because the organisers and other mothers now know about his allergy.

It also really does depend on where you are and who you are with. If I am at a friend’s house who “gets it” and ensures that where the children are playing is a peanut and nut free zone, then it makes a huge difference.

In addition to the worry surrounding policing potential peanut consumption, another source of anxiety has been whether we should have anticipated his peanut allergy. I tell myself that, as a lay person with no medical knowledge, it wasn’t something I could have predicted. I do wonder though, whether GPs should expressly warn of the peanut allergy risk when prescribing eczema creams or asthma inhalers to babies, given such atopic conditions put you in the higher risk bracket for food allergies.

Having D skin prick tested for all nuts really assisted me in getting a handle on his allergy. Although we currently still avoid all nuts (despite him only testing positive for peanut), having as much information as possible about his allergy gave me some peace of mind. In the same way, I know I will feel better if we have his younger sister allergy tested too, when she is a little older.

How it affected family and friends

Some family and friends have been worried about having D in their house, particularly over a meal time. This seems to be getting better over time.

5. How to talk to people about his allergy, so they comprehend the severity

Something we had to learn early on was how to explain the severity of D’s allergy to playgroup organisers, waitresses and acquaintances.  “Allergy” didn’t seem to quite explain it. I usually say “my little boy is severely allergic to nuts” (emphasising the severely). Depending on who I am talking to, I sometimes go further and say “my son has a life threatening nut allergy”.

6. How to cope with his return to nursery

Fortunately, D’s nursery have been excellent in the way they responded to his allergy. The measures they put in place have certainly felt comprehensive and, as a result, we were comfortable with him going back to nursery.

Saying that, there have been occasions where D has come home with a bite mark or a bruise that the nursery staff were unaware of and have been unable to explain. For this reason, the prospect of increased nursery ratios worries me: we need to know that the signs of an allergic reaction will be spotted quickly.

7. How to deal with toddler social activities, such as playgroups and soft play centres

I’ve touched on this already. In addition to policing toddler wars, with a severely allergic 2-year-old you need to be on guard for them grabbing dangerous food out of another child’s hand or picking it up off the floor.  For this reason, seemingly innocuous activities like taking your severely allergic toddler to a playgroup or soft play centre can become stressful. This does seem to ease, as you get to know the venue, the organisers and the other mums.

8. How to eat out at a restaurant safely

Although we haven’t eaten out often since D’s diagnosis, when we have, Pizza Express has tended to be our favoured choice. For fast food, we keep McDonald’s in mind, as a safe fall back option.

The Food Standards Agency and Anaphylaxis Campaign websites have tips on eating out safely. The Anaphylaxis Campaign has also just launched a Tried & Trusted review directory, where members can rate the allergy friendliness of restaurants, pubs, airlines and hotels.

[Update: for the cafes, pubs and restaurants we have visited, see lists for Cheshire and Cornwall.]

9. How to handle Christmas: alcohol, chocolate and cake

Think Christmas, think Quality Street (nuts!), think Christmas pudding (nuts!), think Baileys (…no nuts, according to their website).

Christmas 2012 was our first nut free Christmas. We certainly consumed a lot less chocolate than in previous years, on account of D’s allergy. On a quest for nut free treats, family members discovered and introduced us to the Nut Free Chocolatier and the Just Love Food Company (for cakes). I have also compiled a list of alcoholic drinks that contain nuts. [Update: see also my list of nut free food.]

10. How to talk to D about his allergy

So far, we haven’t really broached the subject of his allergy with D in any detail. If we’ve been at a friend’s house where the other children are tucking into cake that “may contain nuts”, I’ve said “you can’t eat that, as it might make you poorly, but have this instead…” (whipping out safe treat from my bag). I’ve also bought the children’s books “Cyril the Squirrel” and “The Girl Who Cannot Eat Peanut Butter”, and, after reading the latter, D and I had a short conversation about how HE couldn’t eat peanut butter either. Going forward, I think we will be using some of the tips suggested by the What Allergy? blog (see  How do you explain about allergies to your small child?).

Challenges we are yet to face

It’s still early days for us and I’m conscious that there are many challenges looming which will throw us back out of our comfort zone. For example, we’re hoping to travel abroad later in the year. Our doctors’ advice is that D could have a reaction to airborne peanut allergens on a plane, so the first challenge will be to find a nut free flight. I imagine we will choose the USA for our first abroad trip, before tackling a non-English speaking country.

Also on the horizon are things like unaccompanied playdates and children’s parties, and of course moving from the controlled environment of nursery to school. These are all fairly daunting prospects at present and I will certainly keep you posted as to how we get on.

4 comments

  1. We can really relate to this. We were lucky that MyItchyBoy’s peanut reaction was not as bad as Dominic’s but as you know, you never know what might happen next time.

    Thanks for posting this as it helps to make us feel normal!

    1. Hi – yes, one good thing (… if you can call it that) was that we were left under no illusion about how speedy and severe an allergic reaction can be. Thanks very much – glad you liked the post and really good for me to hear from someone in the same boat too!

  2. Hi Louise, I hope your flight was stress free! I’ve found when flying with many airlines, that if I flag up the peanut allergy when booking, they will ensure the flight is peanut free and also put out an announcement asking other passengers not to open peanuts. In fact, when one couple refused, the captain moved us to another area of the plane on a BA flight. You might not have to fly only with nut free airlines. X

    1. Hi Helen – we’ve actually still not ventured abroad! I’m now at the point of being nagged by my 3-year-old who is mad keen to go on a plane … so I’m definitely hoping to sort this out this year! That’s really reassuring to hear you’ve had some good experiences with airlines. Thank you!

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