Nut allergy - should I be asking for more tests?

[PigWhisperer]

Early last year my daughter had an allergic reaction to a nut bar. She didn't eat any of it, but still had swollen mouth and tongue, a rash inside her mouth and was very sleepy. It was controlled using piriton.

When I went to the Doctor he referred her for tests and gave me a prescription for 2 epipens and very little advice. I have since found out she should have 4 epipens (2 home, 2 school) and that the prescription he gave me was for tiny children and so not strong enough, but that alone made me wonder about how much the GP understood our issue.

Our local hospital was too busy to test her, so we were referred to a private clinic. She had scratch tests for 2 out of the 3 ingredients that were in the nut bar (they didn't have a serum for the 3rd one), grass and dust mites. She had reactions to all of those tests.

That is the last bit of help we have had. My concern is that other children who have had reactions seem t have a much wider set of tests and also follow ups, where we haven't had anything. I am avoiding all nuts and seeds, but at the same time I wonder if I need to do this as perhaps she is only allergic to a few of them?

Should I be pushing for a full test? Should there be any follow ups? Is this the standard level of care - in which case I will relax and get on with it?!

Thanks

my Ds had a reaction to peanut butter and referred to paediatric allergy testing at hospital. They did a screen of around 30 possible allergens by a pinprick test on his arm. They then identified the ones he was allergic to, gave me a plan and that was it.

He doesn't have an epi pen as his reaction deemed only moderate so have to carry Piriton.

PigWhisperer, we have a nut allergy (among many other allergies), and carry an epipen. Our GP only prescibed one (we had to fight to get a second one for nursery), so it's possible that when you got two, it included a spare for school already? If your child is more than 30kg, then you should be looking at the 300mg pen, but the 'baby' one (usually called junior) goes from about 15 to 30kg. They give it to the smaller kids, but that doesn't mean it doesn't work on the older kids as well. If they've given you two of the pens, and they've said to carry both at all times, then it equates (after both doses) to a pen that will work for a child greater than 30kg.

With regard to hospital testing, we have never waited less than about 4 months for an appointment under NHS. They are swamped, and much of what people want done by them is better done in other ways. For example, if you do skin prick testing for the things you are worried about, and thus have not fed your daughter, she will not have yet developed the antibodies to them (which doesn't happen until they are exposed to the food), and will thus not test 'positive'. Even if they do test positive, it gives a likelihood that there will be a reaction, but no real indication what the reaction will be - eg it could be anaphylaxis, but could also be just eczema.

the gold standard for allergy testing is a food trial. this involves getting a time when your child is having no other reactions/illness, then giving amounts of the 'trial' food in increments which start at just touching the food on the bottom lip, then feeding the tiniest amount, then increasing until you reach the 'normal' amount you would eat. Although this can be done, in theory, with the doses around an hour apart, we do them at least a day apart in our house because several of our reactions do not happen immediately (eg eczema sometimes takes a few hours to come up; diarrhea can happen quite a bit later). After each dose, make a record of time/amount and reactions. If it gets to a point where reactions are showing up, you know they have an allergy. If there is no reaction, you know you're safe. Best to google the details as there are lots of sites which have good instructions; there are also additional 'complications' for how processed a food is - eg raw milk will often have a different reaction in the same amount as milk that has been baked for an hour (eg a cake).

Allergy UK and many other allergy sites are worth looking at for advice.

Hello there. I think that the tests and advice you've been given is actually pretty standard. Skin prick tests are thought to be the best guide to future reactions, whereas tests on blood samples are not so accurate. The size of the weal that appears on a positive reaction to a skinprick is a reasonable guide to the severity of the reaction. When DD has been tested in our local (world-class) allergy clinic, they have usually tested for a wide list of things, guided by other evidence.

Positive skin prick + history of severe reaction (especially with asthma) = Epipen prescription. I would say that four Epipens is unusual. We have three, one at home, one at school and one that is in the bag that DD carries everywhere. They have a relatively short shelf life, typically 12-18 months (expiry marked on tube).

You need a clear emergency plan and you need support. Our plan was issued by the hospital a few years ago, and is updated every so often. If your DD is school age then you need to sit down with the school and the school nurse to work out your school plan and make sure that staff who work with your daughter know the plan and have been Epipen trained. Our plan covers what to do in case of a mild or a severe reaction, plus contact details. Originally, DD's school plan had her photo with it, and the whole thing went on the Reception noticeboard. Also make sure that you are Epipen trained. (need a hug icon here, it's all a bit overwhelming) Asthma puts you at higher risk of severer reactions, so make sure that asthma is managed very well.

Then you need really good information and a think about your home and your lifestyle. We joined the Anaphylaxis Campaign who have an excellent website, quarterly magazine, and helpline. There are some good books (PM me) if that suits you but take care that books etc really and truly cover nut allergy as opposed to intolerances.

We avoid all nuts and some seeds. DD is fine with sesame and poppy seeds but I don't give her sunflower or pumpkin seeds. They can test for sesame allergy, it's a very common allergen (and a great relief if it's not present).

Our house is nut-free, except for granola bars that my son eats in his room.

We read all the labels. Always read the label. 'May contain' is a bit of a nightmare. DD avoids 'may contain' foods (she's had severe reactions in the past). For nuts, the main difficulties are chocolate bars (no Cadbury's), granola bars (off limits), cakes and muffins, and posh bread. Also pesto, icecream...well the list goes on.

At the time of writing (but always check) DD eats Kitkats, Tunnocks chocolate wafers, Galaxy, and mint Cornettos.

And breathe. It is a lot to get your head around and it will take a while but you can do it.

Thank you everyone for taking the time to reply with such great practical and calm advice. I suppose I am trying to be relaxed about it but the consequences of getting it wrong are just so frightening. I'll be honest, the Consultant warned me her next reaction is likely to be very strong and would require and ambulance and it does worry me.

DD is 11 so can be wary of her food intake and is very sensible about refusing food she is uncertain about.

It is reassuring to know we have received the standard level of care. I was concerned when we were moved off to the private clinic that somehow we had fallen off the system.

MayfairMummy I am going to try a food trial with some seeds.

rogueelement I wills peak to the school about the emergency plan and also will pm you for some book titles.

Thanks again everyone. And breathe Pig, breathe!