Why no epipen?

[Clara35]

Hi all, my ds is 3 & has cmp & egg allergy. Was just wondering does there have to be a reaction involving breathing before you can get epipen? Ds comes out in hives if touches milk or round mouth if has eaten any. Don't know what reaction would be to egg as only know he is allergic due to hospital tests. Could he go from these minor reactions to a major reaction where epipen would be needed & can I ask for epipen.

Honestly, I don't know what the problem is with issuing epipens, but wanted to let you know you're not alone. We have an epipen now, but we didn't get one until DS2 was 3. Prior to that he'd had 2 anaphylactic reactions, and they still didn't prescribe one. The consultant said that, as he was so young, it was our responsibility to control what he ate/came in contact with.
The first 2.5 years of his life were extremely stressful!

If your DS 'only' comes out in hives if it's eaten, then I imagine that's the reason for no epipen, as piriton should sort that. Not everyone with allergies has epipens, piriton/other antihistamine is a bit of a wonder drug in my eyes.

Regarding future reactions, I don't think there's a way to predict how they'll go. I know it's very worrying, but it sounds as though the CMP allergy is not too severe at the moment.

DS had a reaction to pine nuts and kiwi, hives, itchy throat then being sick. There was a 3 month wait for the allergy clinic and I asked my GP to prescribe us some epi-pens just in case, he was fine with it.

Once he'd had his tests done the hospital prescribed epi-pens for school and home.

They're a PITA to carry but do take the worry away (a bit!).

I think there does have to be a severe reaction before they will issue an epipen. I think they might also issue them for nut allergies that show up on hospital tests, even if there hasn't been any contact with nuts. My DS has one as he is allergic to nuts; he's had two encounters with nuts, and they have both involved instant diarrhoea/projectile vomiting and swelling of his mouth and face. The second reaction was much worse than the first, so the consultant is, I think, working on the assumption that any subsequent reaction would be even worse.

All that said, it took several years to get to the epipen stage. It was only when we were referred to the allergy clinic when DS was eight that they did all the tests properly and then gave him the epipen.

If its 'just' a few hives then no need. Anything involving swelling around the mouth, or airways (eg coughing, funny voice) and I would push for one - or if the reaction seems to get worse.

The provision varies wildly across the country and according to who you see. They are expensive, hence the reluctance sometimes to prescribe them, but look at the recent NICE guidelines on dealing with allergies if you don't think you've been given appropriate advice.

We prescribe epipens if the child has had a reaction involving difficulty in breathing or swelling of the tongue and mouth to the point of the voice sounding funny. We have a slightly lower threshold in kids with asthma as well. There are a couple of reasons for this - the main one being that in kids with minor reactions (ie hives) the risk of problems from using the epipen inappropriately (ie when you're not having a reaction, or using it due to a reaction INSTEAD OF rather than AS WELL AS seeking medical advice) is actually significantly greater than the risk of them coming to harm from an anaphylactic reaction (most kids who get hives etc will never have a full blown anaphylactic reaction)
There is also the cost to the NHS which has to be a consideration - epipens are quite expensive and they expire. A child needs at least 4 - 2 for home and 2 for nursery/school (2 at a time because if you have given one, still have difficulty in breathing and the ambulance is not there yet you can give the other). The vast majority of the time epipens are re-prescribed because they have gone out of date rather than been used. If we prescribed 4 epipens every 2 years to every kid in the UK who has hives with certain foods but never has and most likely never will have an anaphylactic reaction (and this also includes training for the family on how to use the pen and also someone going out to school to train all the teachers) the cost to the NHS would be huge!

Young children with milk and egg allergies tend to grow out of them during childhood. (that bears no relation to whether they need an epipen whilst they have the allergy though) - if not suggested by your doctor it is worth asking for a (formal in-hospital, not at home) food challenge in a few years time

Thanks everyone, great advice as always! We go again to allergy clinic in November so not too long to wait to see if allergy reducing at all. sparrow thanks for all your advice. Its good to know it's not the norm for a hive reaction to go to full anaphylactic.

I'm not sure tbh but here's my story about hives and epi-pens.

We have complicated allergies here - as in not food and not t anything that's been tested! (except hives reaction to ketchup which is ongoing so we avoid). DS had a lot of hives attacks last year and then a reaction which was severe and breathing became rapid and very nasal with facial swelling to the eys and bottom lip. Not a hospital jobby luckily but did phone OOH GP who remained on phone until DS improved. We used 15ml puriton in total.

DS was referred back to Cons Pead (not seen allergy specialist) and was given Epi-pens in case of severe allergic reaction involving cario and respiratory systems. Last appointment despite how well DS has been the Cons said the GP to review epi-pens yearly but advises they are kept for a few years.

So although the hives don't cause any risk there is the chance a reaction may progress to be severe. I would push for them if your DC ever has a reaction involving breathing/ coughing/ loss of voice. I would always use AH first, and will automatically give a double dose now as advised by Cons.

It is true about the cost of unused replacements and the fact someone may use it instead of the AH, but I like to think (and know I certainly do/am) that parents are sensible enough not to use an epi-pen unless it's needed and to always use AH/ A&E first.

1. In some parts of the UK, there are moves to prescribe just one pen for school / nursery, and arrange for a a generic 'second' pen to be kept centrally by the school / nursery as back-up, thereby saving the c£27 NHS cost of multiple second pens. Normally pens are 'named patient only' but effort is being made to formalise this arrangement, rather in the spirit of AEDs - defibrillators in public places.
2. As many pen carrying families know, there are changes afoot: The Epi-Pen is changing and now imported by MEDA, a different company. The Anapen is an alternative which is also available in a bigger 0.5 dose, and Jext is new to the market from ALK. Whatever you are prescribed, make sure it is correct for the person's weight, and in date, and do the online training to know how it works.

Hazel - that sounds like one of those ideas that is so blindingly obviously a good idea, that you can't believe no one has thought of it before! Hope it becomes widespread, it would save a fortune (and reduce the number of times that us parents have to run around getting repeat prescriptions).

I agree lukewarm. My DS has 5, all prescribed in Feb. 2 expire next week (twin pack), 3 in April (all singles). The 2 replacements are single pens as well (seems to be all that's available locally atm), and 1 expires next June the other next Sept.

PITA trying to keep replacing them when they all expire at different times.

We were told by the allergy consultant that she would prescribe them only if above the weight range, had had an anaphylactic reaction (catch 22!!) or had asthma.

Illinois has recently enacted an Emergency Epinephrine Act allowing schools to keep stocks of generic 'second' pens as per Hazel above. Came about through lobbying by a state representative after this fatal incident

trixy I think that's where it still differs within 1 country.

DS has the adult 0.3 epi-pens (weighs 23.5kg), never had an anaphylatic reaction (just one severe reaction with mild shock symptoms but stopped with 15ml puriton), doesn't have asthma or any known allergens, just a raised eosinpohil count and his allergic history.

I find it interesting (and scary!) to think elsewhere we wouldn't even get a referral to cons or allergist let alone treatment.

Hi,

We're in Scotland and DS3 has been issued with Epipens following an allergy clinic appointment on Monday.I was quite surprised at the list his blood tests threw out.We knew that latex was an issue (I have the same allergy) but I think what forced the issue was a wasp sting.In July,DS3 was stung on the neck which turned red and swelled up but not dramatically.We iced and gave Piriton but logged the incident with NHS24 'just in case'. In August he was stung again (unlucky or what) this time on the hand which instantly ballooned up and was extremely painful.We followed the same procedure but had to repeat the Piriton so he had 15ml. Anyway, GP decided that he should be referred for tests as apparently once you've had a bad reaction to a wasp sting, they can get worse. So, although we haven't had a situation where his breathing has been compromised,I think the hospital just isn't taking chances, particularly as we live in a semi rural area. Our major headache is our school where no one can remember the last time anyone had Epipen training and the next course isn't until November!

Fingers crossed the wasps stay away from him til then!

ps.Bananas,Kiwis,and border line Dairy have also been highlighted, will have to stop my older 2 chasing the littlun around the garden with a fruit bowl!