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Nuts and Epi pens - advice please

(16 Posts)
MerryCouthyMows Wed 16-Jan-13 11:22:20

Every reaction my DS3 has had has been worse than the one before. Each anaphylactic reaction is stronger, comes on quicker, and takes longer to resolve.

We have had to use his Jext pens 3 times now - once after skin prick testing. His reaction to Dairy was off the scale, his entire arm swelled up, his throat closed up, and the hospital say they've never dealt with a child so young with such a severe Dairy allergy.

He does not go ANYWHERE without a bottle of cetirizine, a bottle of Piriton, two Jext pens, his allergy management paperwork and two oral syringes.

It is impossible to avoid cross contamination of Dairy, Nuts, AND soy when outside the house. We keep a totally nut free house, an almost dairy free house bar the table and one counter in the kitchen. We have separate cooking equipment and utensils.

These sort of severe reactions need to be taken more seriously.

Hi Bundle. My DS has nut and egg white allergies, and has epipens. He was prescribed them 4 yrs ago (he's now 6) and we've never had to use them yet. Unfortunately, sometimes they fail, which is why you will probably have been prescribed 2. My DS's school have changed the rules on epipens, and now ask for 2 to be kept at the school permanently, because they do sometimes fail.

Children grow out of 'sensitivities' more than allergies, and many parents of undiagnosed children say 'my child is allergic to this or that' but they're not. It is usually a sensitivity rather than a full blown allergy. Allergies kill, sensitivities don't.

And yy to avoiding the bakery counter. I bought some cookies that said 'no nuts or egg' and as soon as DS took a mouthful he said 'my mouth hurts Mummy'. Just easier to avoid the counter altogether.

Be careful of stuff like marzipan, meringue, coconut etc as most people don't think of these things as nut or egg products.

A RAST test is a good diagnostic tool, ask your GP to do one if you need to be sure. It generally works best after 2 yrs old.

babybarrister Wed 16-Jan-13 08:30:58

The Yorke tests are totally flakey and you will not find any reputable charity which supports them - certainly the Anaphylaxis Campaign and Allergy UK condemn them roundly ...
Have a look at the websites and get your information from there - your dc may outgrow nut allergy but as others have said, it is far from probable unfortunately

ukey Tue 15-Jan-13 20:45:40

Really if you have been prescribed epi pens you should have 2 with you at all times. So your wee one should have 2 at pre school, and 2 at home.

1. who ever injects them MAY do it wrong, many people have injected their own thumb by mistake instead of injecting the person who is suffering with anaphylaxis, also its a common mistake to pull the injection out too quickly

2. usually an anaphylaxis plan will state to give a 2nd epi pen if symptoms have not improved after the first dose.

you should also carry piriton with you at all times, if you ask at chemist they will provide small bottles to dispense some piriton into, this saves carrying a large sticky bottle about with you.

it is not possible to tell how severe a reaction will be, so its always best to be prepared,

ensure that pre school and anyone who will care for your wee one is confident in recognising and treating a reaction.

you can also get trainer pens from epipen.co.uk, these are very useful for practicing, and also for family and friends to learn how to use them.

if you don't already have one, make sure you have an anaphylaxis care plan.

Avoiding 'may contain' is a personal choice, though we don't risk it.

Only about 20% of children outgrow nut allergy. But the possibility is there

Its more common to outgrow milk and egg allergies than nut allergies

bruffin Fri 04-Jan-13 14:14:26

Ds has been allergic to treenuts and sesame since he was 4. He also was allergic to peanuts but grew out of that allergy but gained one to chickpeas.
He didnt have an epipen as although he had facial swelling etc he never had a reaction that affected his breathing and didnt have asthma. When he was 16 he ate a biscuit that he didn't ask the ingredients of and turned out had macadamia nuts in. To be honest I dont think he probably knew what a macadamia is anyway as you really dont across them often. This reaction did affect his breathing but he got better without any intervention other than piriton.

He did ask for an epipen after that and has got one, but to be honest we ignore most of the nut traces warnings and its not a problem. I have never had a nut or seed free house because it is up to him to check and shouldnt rely on other people to make sure what he can and cant eat.

The problem at his age is the teenage head that doesn't think straight, but i think the biscuit did give a bit of a shock.

Andro Fri 04-Jan-13 14:00:25

Like Visionsofj0hanna I'm surprised (and indeed worried) by some of the comments on here. Allergic reactions can and do get worse, maintaining high awareness is really important. My own allergies are, to put it mildly, a bit strange and this has caused me more problems than it really ought to have. My doctor repeatedly refused to refer me for any kind of testing because "you can't possibly be allergic to cheese if you can have all other dairy without a problem".

Anaphylactic shock and a week in intensive care after an accidental ingestion proved him wrong on that one - I was 13 when it happened and the reaction had built so gradually that the adults around me had become more than a little cavalier about my problems. I can't begin to describe how terrifying it was to not be able to breath, or how upsetting it was to find out that the accidental ingestion was because a family member (not one of my parents) had assumed that because I'd never had a really bad reaction I was just being over-cautious so a 'tiny bit of cheese wouldn't matter'.

Please, please, please maintain your vigilance...the alternative isn't worth the potential consequences.

Visionsofj0hanna Fri 04-Jan-13 06:22:58

Whilst I don't wish to make you more anxious about your DS's allergy, I am really surprised by some of the posts here.

I have had a peanut allergy for 25 years (since being an infant) which has been widened to tree nuts as well. I was given an epi pen as soon as they were developed. It started with a rash. 2 years later it was sickness. After 15 years it was swelling of the throat. Last week when I was mistakenly informed a dish was nut free I was rushed in to resuscitation in A&E with full blown anaphylaxis having used my epi pen. The first round of drugs didnt work, the reaction came back and i was kept in and monitored for 2 days. Thank goodness i was 2 mins from the hospital.

I say this not to scare. But I was always told by the Allergy Consultant that I would not grow out of it and to expect every reaction to be worse than the last. And it has been. So whilst for some it may only be a rash/ sickness now, this does not mean it might not be more serious in the future. By having a nut free house and avoiding nuts now you are preventing more sever reactions later in life.

Of course you will be anxious about your DS's allergy and I am sorry if I have increased your anxiety. However it is better to be informed. I don't have a proclaim to have a medical background and can only speak based on my experience of allergy from infancy to adulthood.
The Anaphylaxis Campaign website is very good in terms of offering support in how to take precautions with a nut allergy http://m.anaphylaxis.org.uk/

Ilisten2theradio Sun 16-Dec-12 00:02:18

DS was DXd with allergies at 16mths.
He has epe pens. We have never used them. The school have once.
HIs allergies have got worse to nuts as he has got older.
We avoid chocolate, buy biscuits etc in packets not loose on bakery counter.
We have had some minor reactions to stray contamination and one or two more severe ones when things have not been checked out properly - but manageable with antihistamine and not requiring an epi-pen.

eragon Thu 13-Dec-12 22:06:00

we have used the epi pen three times.

we avoid may contains due to the reactions he has had to may contain food.

he is no longer tree nut allergic to we have them in the house. we also have egg etc, but currently he avoids all egg. This may change in time.

high risk food, chocolate, bread, cakes, biscuits, cereal etc. dont go to delli section of supermarket as high cross contamination area.

multiple allergic person, has grown out of some allergies, but is life long allergic person.

we assumed that at some point we would use an epi pen, as its been prescribed for a reason, as accidental ingestion happens at times, and he is at risk. We used it at 12 yrs /13/14yrs. with other minnor reactions in between.
Its a great comfort to know they work and are easy to use!

Bundlejoycosysweet Thu 13-Dec-12 14:38:40

Thanks for all your comments, really useful.

Was really hoping he'd grow out of allergies not get more!

Just buying food for my DS1's party and trying to make sure DS2 can eat everything so I don't have to keep saying no. Thank goodness for party rings!

trixymalixy Thu 13-Dec-12 04:49:00

My DS has multiple allergies and athsma and has an epipen. We haven't had to use it yet (touch wood).

I felt the same when he was first prescribed one. It felt a whole lot more serious.

With may contain warnings, we mostly ignore them apart from when it comes to chocolate. It seems particularly bad for cross contamination, either that or the nut warnings on other products are just to cover their arses.

SavoyCabbage Wed 12-Dec-12 09:56:47

I've never used mine. Dd is nine. We have become less vigilant over time which I think is only natural.

My dd has only ever thrown up through her allergy to peanuts, which whilst not nice for her, is not that bad in the scheme of things.

I remember doing my first shop after getting a diagnosis. It took hours but it does get easier.

NotMostPeople Wed 12-Dec-12 09:54:49

My DS's best friend has a nut allergy and has an epi pen, his mother hands it over whenever he comes to play and she has given me instructions on how to use it. He hasn't ever had to use it and is 10, so it need not be an issue. I've found that most packaging is very good at noting if there are nuts or not, I tend to shop in Aldi and there's an allergy section on all their food packaging. I would say it's a bit of an inconvenience but really nothing to panic about.

JoleneB Wed 12-Dec-12 09:51:43

It sounds like it has been prescribed as a precaution, I was prescribed an epi pen for allergy to almonds when I was 4, never had to use it and by 12 I had outgrown the allergy.

I wouldn't personally change any thing unless it was causing reactions, what did the paeds advise you to do?

Cutandstick Wed 12-Dec-12 09:50:18

Hi bundle I have had an epi pen for 10 + years and never had to use it, though I use antihistamines a lot. It is for wasp stings as my reaction was quite extreme last time, though I got a tiny prick last summer and was fine. I also have a dairy allergy that has got more extreme over the years and they say I may need it for that at some point. Think of it as an insurance policy - good to have, but hope you'll never have to use. I would have antihistamines on you and at preschool permenantly. He is little so is likely to grow out of it. There is a thing called the York test you can get done privately, at great expense, that will be more specific - however I know intolerances and even allergies can change in time. Good luck xxx

Bundlejoycosysweet Wed 12-Dec-12 09:41:09

Just seen allergy consultant for my milk and egg allergic 2yo and has now been diagnosed as also allergic to sesame and nuts (after I described some reactions he had had to foods like hummus and muesli and they did a skin prick test). Because my son is sometimes wheezy he has prescribed him an Epi pen and one for his pre school too.

I feel like this has suddenly accelerated my anxiety about him and I'm not sure what to do. Should we make our house totally nut free? Or because it hasn't been so far and nothing bad has happened just keep nuts in the house but away from him? Also he eats stuff like oatcakes that say 'not suitable for nut allergy sufferers' should I stop him eating these or cos he is fine with them just keep giving him them?

Also does anyone have an Epi pen and never had to use it? I guess I just want reassurance that this new diagnosis doesn't mean something awful will happen...

Thanks so much for any advice!

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