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My son has a peanut allergy but no epi-pen

(21 Posts)
Smoony Mon 29-Mar-10 17:13:39

Hello everyone!

My friend PixieOnaLeaf had a thread involving my son the other day because she wondered why her son had an epi-pen for his celery allergy when my son didn't, although he had a peanut allergy.

One of the ladies who wrote an answer said that she thought I should come on here to ask about epi-pens and what we should be doing, so here I am (be kind to me, this is my first post!).

Well, Sam was diagnosed with a peanut allergy last summer. He had eaten peanut butter, which he had had before and was always OK with, but this time he got massive hives all over his body and was sick once. It looked like he was being allergic to something, so I gave him some Piriton (he also has mild hayfever) and it calmed down.

The GP referred us to the allergy department at the hospital and they did Skin Prick tests and blood tests and confirmed that it was a reaction to peanuts and told us to avoid them at all costs, which we have done. They also said that we should carry some antihistamine with us everywhere we went, but if we avoided peanuts it shouldn't be a problem. They said because he hasn't got asthma and his breathing had been fine when he had the reaction, they wouldn't prescribe an epi-pen. I gave him the Piriton pretty quickly though, so I don't know whether he would have had breathing problems if he'd been left.

Do you think he should have an epi-pen?

Thanks in advance!

PixieOnaLeaf Mon 29-Mar-10 19:11:19

Message withdrawn

Janestillhere Mon 29-Mar-10 19:16:08

My son reacted to cashews 2 yrs ago. Difficulty breathing, hives etc and overnight stay in hosp.

He has 2 epipens at school (they want 2 incse 1st one doesn't wk) and one at home.

I think you need to go back to GP and say you would feel more reassured if your child had one - the next reactions (God forbid they happen)may be much worse. x

JaynieB Mon 29-Mar-10 19:16:24

A friend of mine DS has severe peanut allergy and has an epi-pen, but from what you have posted maybe your son has an allergy but less severe? From what you describe he had an allergic, but non anaphalactic reaction.
I'm no expert!
I too get hay fever and have a mild reaction to hazelnuts, but oddly seem ok with other nuts.
I think one of the issues with allergies, is that repeated exposure can trigger more severe reactions.

Smoony Mon 29-Mar-10 20:41:34

Thanks for the answers, and bumping for any other advice.

I think there was a poster called Tatt on the other thread who said that I should come and ask?

mumbar Mon 29-Mar-10 20:56:12

My DS 5yrs had a similar reaction to tomato sauce??? Is having RAST blood tests next week with ketchup, tomato and also peanuts altho he's never actually eaten them direct. The consultant peadiatricain advised me that as he didn't have breathing difficulties then she didn't feel he needed an epi pen either.

I'm not sure if we get a positive result from the test how i'll feel.

I carry puriton in my bag and in it i've written a care plan for what to do if DS has a suspected allergy reaction. Maybe do this.

will post when I know the results of RAST test (still hoping it's negative and just a random allergy reaction) as I'm sure you'll all have some useful advice for me mummies.

Interesting as my son seems to have hayfever too.

bridewolf Mon 29-Mar-10 21:09:34

i think you should ring the anaphylaxis campaign and ask for their opinion/advice.

imo, its worth getting a 2nd medical opinon. peanut is a unpredictable allergy, and severity or not, should not be based on previous reactions.

peanut allergy is bit like being pregnant, you cant be a little bit preggers, you either are allergic or not.

piriton may work for a minor reaction, but your question to the medical people is ' will every reaction be minnor? will piriton work every time for every reaction?

good luck.

BlueBumedFly Mon 29-Mar-10 21:40:38

I agree with bridewolf, you are either allergic or you aren't. The medical professional in question has no way of telling what effect a future reaction will be like. It's all very well saying avoid nuts but we ended up in hospital as sdd held hands with another child who had eaten peanuts a hour or so before.

I would go back and talk to the doc again. We never knew sdd has asthma until we saw an excellent allergist who almost diagnosed her on sight. Go back please, for your peace of mind and your son's wellbeing.

DaftApeth Mon 29-Mar-10 21:52:19

Ds' consultant did not prescribe an epipen for ds for his allergies (peanut, hazelnut, egg, as well as some airborne allergens) but our gp did once she saw the results of his blood tests.

I'd speak to your gp in the first instance, as they are easier to make an appointment with than a consultant.

topiarygal Tue 30-Mar-10 07:57:13

Agreeing with the above advice - your child is allergic. And you don't have to be asthmatic to have an epi-pen. There is no telling what future reactions may bring and you cannot rely on emergency services reaching you in time. Do ask your GP for an epi-pen.

We weren't given any and then DS' first anaphylactic reaction was really traumatic. Given the extent of my sons' allergies at the time I regret not having pushed for it. we now have the epi-pen.

Good luck!

bruffin Tue 30-Mar-10 08:21:38

Neither DS or DH have never had epipens. DH has never been to the doctors re nut allergy and the consultant said DS was borderline because he doesn't have asthema and left it up to us. DS outgrew his peanut allergy but still has treenut and various other allergies.

tatt Tue 30-Mar-10 09:00:42

Hi smoony. Yes it was me suggested coming here. Your son is at primary school, only diagnosed recently and after a clinically significant reaction not just a test result. So unfortunately his chance of outgrowing this is small.

When my child was diagnosed with peanut allergy we saw one of the very few consultant allergists in this country. Most people have to see paediatricians. He believed that as peanut allergies are unpredictable everyone should have an epipen. Therefore we had 4 - 2 for home and 2 for school. We didn't need them until secondary school (although we had some worrying moments). Then our child had a reaction at home to food with no nut warning of any kind. Piriton appeared to have no impact, although it may have slowed things. Within minutes my non-asthmatic child had a hand at their throat and couldn't speak to me. The epipen reversed the reaction very quickly. I'm not convinced an ambulance could have reached us in time.

My personal experience means that I am always unhappy to hear of children who have reacted to nut without being given an epipen. It's different if they test positive but haven't reacted, many people have low positive tests but don't react.

So I would say go back to your gp and ask if they can guarantee that your child's next reaction will not affect their breathing. They can't. Tell them that without an epipen you will feel you need to call an ambulance for any reaction. If you are likely to fly anywhere or be some distance from a hospital mention that too. There are not many reactions on planes but they can be worse at altitude.

The main reason epipens are not prescribed more widely is the cost. Some doctors will dress this up with comments about their "risk" - my gp tried that before admitting it was his budget that concerned him. If they think you'll call ambulances that will cost more.

The risk from carrying an epipen is low, sometimes people prick their finger by mistake and then its best to go to a&e to get it checked out. Our consultant was not at all impressed by that argument, he thought the real risk was not having an epipen.

You might also like to know that there is a desensitisation programme at Cambridge. BBF has taken a child through that and doing an advanced search would throw up past posts. Still sort of experimental but children who have been through it can now eat peanuts. Requires a big time commitment.

tatt Tue 30-Mar-10 09:08:25

btw forgot to say that you can NOT guarantee your child will avoid nuts. We avoid any food with nut warnings and no nuts are permitted either in our house or car. Our child still had several minor reactions before their anaphylactic reaction.

girlsyearapart Wed 31-Mar-10 07:44:30

hi we have just been through similar- our dd2 is allergic to multiple things and has only ever been prescribed anti histamine.

After a strong skin reaction to a very small bit of cracker with sesame seeds on they tested her for peanut and sesame which brought out 9mm wheals- the strongest reaction she has shown so far.

We were told no epipen unless GP would precribe as she is only 9kg (18 mo)until she reached 13kg, has not got asthma and has not had a 'true' anaphylactic reaction (has had a reaction to something where eye and lips swelled though).

I phoned the GP preparing for a fight but they said straight away that they would precribe her with an epipen which we now have.

Paediatric outreach nurse also strongly agreed she should have a pen- try for a referral to them if you can?

tatt is right you can't avoid everything no matter how hard you try- the seed cracker thing was cos my mum gave dd1 a cracker and put her in her car seat where she broke a bit off and fed to her sister.

tatt Wed 31-Mar-10 17:23:14

smoony there are a couple of other things you may not have been told. If your child exercises then eats something with nut in the reaction will be more severe. The reason isn't known but it's possible dehydration has some role. So if your child does have a reaction you must keep them relatively still until help arrives. They shouldn't stand up but they can sit up if that helps their breathing.

Children sometimes go floppy or collapse when having a reaction. It's due to a sudden drop in blood pressure. The lungs will be affected even if breathing problems aren't obvious. It's still an emergency.

Children with one allergy have a nasty habit of developing others. Around half of those with peanut allergy either have or develop tree nut allergy.

SarahKS Sat 13-Apr-13 21:58:25

Hi, I googled peanut allergy and this thread came up, I hope you don't mind me hijacking and asking for advice? My daughter has just been diagnosed with peanut allergy, she is 15 months and had a reaction to peanut butter about a month ago; hives, swelling round eyes and mouth, croaky voice, very pale. But the reaction went down within half an hour and with no antihistamine, as it was a complete shock to me, I have no experience at all of allergies. We saw a paediatrician and he did skin prick tests, referred us to a dietician ( she is also dairy intolerant), and said if it happens again to use piriton and call 999 immediately, I asked about epipen but he said because I didn't think the reaction had included throat swelling, he wouldn't prescribe it, but I must call 999 in the case of any more reactions. This has freaked me out a bit, we are peanut free at home, grandparents and friends we see often, but I am so terrified she will come into contact somewhere as she is into everything and everything goes in her mouth. Should I have pushed for an epipen? Should I get a second opinion? He gave me a leaflet on food labelling which had an e mail address to an allergy centre not far from me, I am wondering could I self refer to them? Sorry to be so long and rambling, I am just very worried.
Thank youn advance.

YoniTrix Sat 13-Apr-13 22:13:13

Like all things NHS there is variation across the country, but my experience is that my DS was not prescribed an epipen as he was below 15kg, had never had an anaphylactic reaction and did not have asthma. So I don't think you pushing for one would have made much difference.

It was only when he sadly developed asthma that he was prescribed one.

SavoyCabbage Sat 13-Apr-13 22:27:56

My dd wasn't prescribed an epipen either. She was diagnosed with a peanut allergy at 4. It was after skin prick tests at the hospital.

Years later I ended up getting one as I was flying on Emirates and they wouldn't let me take antihistamine on board.

SarahKS Sun 14-Apr-13 08:23:27

Thanks for your replies, I had read that they needed to be 15 kg or the dose would be high enough to do damage, but you know how it is, everyone keeps asking why she hasn't got one so I was beginning to wonder if I'd been too accepting. Thanks again. Would welcome any further advice. Xx

thehumanegg Mon 15-Apr-13 16:34:58

The consultant allergy specialist we saw said that if we get a positive reaction for peanut on upcoming skin prick tests we would automatically be issued with an epi pen. My daughter is 8 months and around 9kg so looks like there is regional variation (unless if it comes round to it he makes a different call based on these factors). Doesn't seem unreasonable to me to push for one.

Spuderoonerism Mon 15-Apr-13 17:55:41

We were prescribed an epipen for DS and I think he was <15kg at the time. His reaction involved hives around the mouth and pulling at his tongue but it came down with Piriton that time. I asked at the time and the paediatric allergy consultant seemed to be of the view a slightly too high dose of adrenaline was better than an anaphylactic shock progressing unchecked. I would also push for one, perhaps ask to see an allergy specialist rather than a paediatrician? Ideally paediatric allergy consultants are the way to go but sadly there are very few of them in the UK. You could also try the Anaphylaxis Campaign and see what they suggest.

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