To demand an EpiPen

[clipclop5]

DD age 15 developed a food allergy during the summer to tartrazine (yellow food colouring).

Her first reaction was the most severe and very scary. 15 mins after food containing it she began to develop a rash and intensely itch all over, before her symptoms began to spiral incredibly quickly ( in the space of 5 mins she had nausea, horrific tummy pain, diarrhoea, dizziness to the point she couldn’t walk, then finally turned very clammy + grey and fainted)

The bit that really concerned me was the greyness + fainting, as this is a sign of blood pressure drop + therefore anaphylaxis. Due to this I would really like an EpiPen for her, as it is very possible this could’ve turned into full blown anaphylactic shock.

If you read coroner's reports and deaths from anaphylaxis (which j do in the hope j can learn more)... A lot of the time awful delays are contributed to by failing to recognise it for what it is and for failing to use the epipen swiftly enough

[quote NeverTwerkNaked]@rainkeepsfallingdown this absolutely does sound like a severe allergic reaction and if you saw someone having these symptoms you should absolutely treat it as anaphylaxis and call 999/administer epipen[/quote]
I'm not denying it was a severe allergic reaction, it just didn't sound like one that would have ended in death. I don't think @clipclop5 has even confirmed how the episode was treated, i.e. whether epinephrine was actually administered to her DD by a paramedic/doctor and whether it was determined this had been necessary after the fact?

There are different severities of allergic reaction - some aren't bad enough to warrant epinephrine and can be treated with prescription-strength antihistamines. When you live with life-threatening allergies for long enough, you learn to tell the difference between something that will make you itchy, something that will make you violently sick and something that will kill you if you don't get to a hospital on time.

I don't think the GP has done anything wrong here by referring the OP's DD to a specialist. GPs can only treat very obvious things and/or things that specialists have diagnosed. The OP's DD requires further investigation.

As @1Morewineplease says, one incident doesn't merit an epipen without further investigation from a specialist. I appreciate it was scary, but it doesn't mean an epipen is needed. The NHS barely prescribes things that are clinically needed, let alone things people just want.

Also - thanks for your comments, but I assure you, I absolutely know what anaphylaxis looks like, having personally survived it on multiple occasions!

FWIW, if I saw someone faint, I wouldn't call for 999 on the basis they were potentially going into anaphylaxis, I'd call 999 because any unexplained loss of consciousness merits an emergency call. In this case, the OP had no epipen, so there was no epipen to adminster (and no way am I sticking my own epipen into someone randomly who hasn't even been diagnosed with an allergy).

I had the exact same reaction your daughter had to something I am allergic to the second time I was exposed to it. My GP gave me an EpiPen because thought a third exposure could be anaphylaxis.

@1Morewineplease

I don't want to devalue the severity of your child's allergic reaction but a first episode is not a prescription for an epipen. Tread carefully and slowly. It might just be an episodic reaction. My son was very allergic to egg, when he was a baby and toddler, so I removed the risk ( which was very hard ) however, I was advised to try to introduce egg , after a long while , in tiny quantities, so I did. He's fine now, but it took a long time. Epipens are not a solution. They are an emergency fix. You need to have a discussion with your GP, regarding the way forward.

For lots of us, including my son and I auto-injectors are the only option, unless a viable option is living in a hospital.

@rainkeepsfallingdown it is one thing to know your own body. It is another to dish out advice on the internet that could lead to someone making the wrong judgement call in a life or death situation. My son's allergy consultant is very clear that if it is a major reaction they would want us to use an epipen. We don't wait to see if it is definitely anaphylaxis.

Given, as I have said, in most anaphylaxis fatalities the delay in giving an epipen /calling 999 has been a substantial contributory factor I think you need to be much more circumspect about how you talk about reactions.

Also you say you "know what anaphylaxis looks like" but actually you only know what it looks like for you. The advice we get every year at allergy clinic as that how anaphylaxis presents varies not just from person to person but also from time to time.

The first time my son had it he looked like Will Smith in hitch- huge facial swelling and welts all over his body. The second time the only "skin" symptom was that he went a bit pale and grey.

JFC, the amount of non-medics freely giving out misinformation on this thread is worrying.

There is definitely a problem getting timely access to specialist allergy clinics, and with getting epipens while waiting even where indicated. I believe the latter issue is sometimes due to local CCG restrictions.

Anaphylaxis UK have a helpline and it may be worth calling them.

Here are the prescribing guidelines for primary care:

www.anaphylaxis.org.uk/hcp/tailored-resources/gps/key-decisions-on-prescribing-adrenaline/

And generally how the NHS should respond:
www.anaphylaxis.org.uk/living-with-anaphylaxis/the-nhs/

I actually did demand my DD was given an epipen- when her GP had refused - and I was proved right by later opinion of later Hospital Consultants. I did it because of her associated history of mild asthma- asthma can make anaphylaxis more likely.

But I also think epipens are over rated in allergic reactions. We use lots of anti histamine syrup - 20 ml at a time if there’s any reaction (I have two with nut allergy).

To me anti histamine is a wonder drug and I’m sure has headed off many reactions. My DC do have a high level of allergy to various nuts.

If a reaction is very severe we use prednisolone (steroid) tablets dissolved in a small amount of water. Obviously we go to A&E

I know epipens support the circulation if they collapse - but they don’t actually stop the allergic reaction/ do they?

To me they are a component of treatment- but I think there’s generally too much focus on them.

@WhoKnowsWhatsAroundTheCorner I am not sure that is an accurate or up to date approach.

In any event I am starting to get quite concerned about the "advice" on this thread some of which is misguided or out of date.

If anyone wants to get accurate advice please go to anaphylaxis UK or allergy UK or speak to an allergy specialist.

Try a private GP, it's not expensive and often they listen and will prescribe more readily than an NHS doctor. But they also may say it's nothing the best course of action.

DS has an allergy to a certain pollen, he has been blue lighted on more than one occasion to hospital after having an asthma attack because of it.

Our private specialist prescribed medication daily to control the symptoms rather than medication to take when he has an attack, this may be a better course if action in your case.

I have unexplained alleric reactions -sometimes it build up over hours and sometimes over minutes. I had 5 A&E trips once in a weekend -never got to the bottom of it. GP would not give me an epi pen 6 month wait for hospital appointment. Then I asked the practice manager to make sure it was written in my notes that they had REFUSED to give me an epi pen -and would take responsibility for it, should someone happen again and an epi pen might have saved me.

There were 2 ready that afternoon for me to pick up.

I think a few people have asked how the episodes were treated but I can't see where the OP has answered that? I may have just missed it.

People have no clue how lacking the medical treatment for allergies can be here. A year after my baby had a reaction that landed her in A&E, we’ve had “that sounds like a nut allergy and you should keep feeding her small amounts of nuts.”

I ended up going to A&E with a really bad allergic reaction to a drink. There is no way to explain how awful it was ... my lips were so swollen like covering most of my face. The person behind the computer took one look at me and ushered me through straight away 🤣 I was kept in over night and pumped full off stuff. I ended up having to see an allergy specialist and had an allergy test which showed I was allergic to quite a bit but still wasnt given an epi pen.

@WhoKnowsWhatsAroundTheCorner

I actually did demand my DD was given an epipen- when her GP had refused - and I was proved right by later opinion of later Hospital Consultants. I did it because of her associated history of mild asthma- asthma can make anaphylaxis more likely.

But I also think epipens are over rated in allergic reactions. We use lots of anti histamine syrup - 20 ml at a time if there’s any reaction (I have two with nut allergy).

To me anti histamine is a wonder drug and I’m sure has headed off many reactions. My DC do have a high level of allergy to various nuts.

If a reaction is very severe we use prednisolone (steroid) tablets dissolved in a small amount of water. Obviously we go to A&E

I know epipens support the circulation if they collapse - but they don’t actually stop the allergic reaction/ do they?

To me they are a component of treatment- but I think there’s generally too much focus on them.

This is a really concerning post.

Adrenaline is essential for suspected anaphylactic reactions. (Obviously it’s not for less severe allergic reactions.) If in doubt, the medical advice is to give adrenaline.

Perhaps this Harvard summary guidance will convince you?

www.health.harvard.edu/blog/epinephrine-is-the-only-effective-treatment-for-anaphylaxis-2020070920523

It can be dangerous to give antihistamines or steroids, unless alongside adrenaline, to someone with anaphylaxis as doing that can suppress the classic allergy symptoms while not addressing the real dangers, eg dropping blood pressure.

Have you run your current strategies past the consultant?

Adrenaline does more than stabilise blood pressure (life saving on its own). It also relaxes the airway muscles making breathing easier, reduces throat swelling and increases heart rate.

The NICE guidelines:

www.nice.org.uk/guidance/cg134/ifp/chapter/After-emergency-treatment

NHS guidelines: www.nhs.uk/conditions/anaphylaxis/

OP, I don't have time to read the whole thread so sorry if I am repeating stuff which has been said already. I am an allergy parent myself, DS had anaphylaxis to hazelnuts when he was 5 (10 now). Your DD absolutely needs not 1 but 2 Epipens (MHRA guidelines state that you should carry 2 at all times). She needs the Epipens while further tests to confirm her allergens are being done, because you cannot predict the severity of one reaction based on the previous ones. The allergy provision in the NHS is very patchy unfortunately. Don't let the GP fob you off, keep referring to the MHRA guidelines, also there is a petition called Always Carry Two and if you google they might have more information and resources.

I can't get too hung up on your wording (demand versus request) because as an allergy parent I realised very quickly that unfortunately you are your child's voice and you have to demand rather than ask nicely.

Good luck, allergies are horrible and I feel for you and your DD.

This, from the NICE guidelines, might be useful, @clipclop5.

@clipclop5 did you take your dd to hospital when it happened?

Thank you @SparklingLime I saw that post and was really concerned but didn't have time to dig out the guidance!

@NeverTwerkNaked

Thank you *@SparklingLime* I saw that post and was really concerned but didn't have time to dig out the guidance!

Having had badly managed anaphylaxis as a kid, having read that post, my blood pressure is now through the roof!

Honestly, I think, in the NHS it all comes down to money. An epi-pen costs £60. It has a shelf life of 6 months. If not used in 6 months it needs replaced. You usually are prescribed several- one to take to work /school, a spare to have at home.
The cost is huge. As a dentist when we are managing our medical emergency kits in work we have very awkward glass vials of adrenaline instead ( because they are cheaper), that we need to draw up and transfer to a string before using. I honestly dread the day ever having to use them as faced with a patient having a full blown anaphylactic reaction in front of me, I'll be panicking, my hands will shake...
if it was my child though, I'd move heaven and earth to find an epi-pen

I have a artificial food colouring allergies (sunset yellow, tartrazine and red) unfortunately they aren't well known at all so quite often get dismissed. My DS took a reaction to tartrazine as well through my BM when tiny it was extremely hard to even get the allergy teams to offer any advice. I need to test him now he's older as been told that they won't do a referral until I have evidence of two additional reactions.

They are unlikely to prescribe you an epipens without seeing the specialist you can speed up the process by going private but even that is usually several months wait time.

The important bit with a reaction is the administration of antihistamines to stop the reaction. Epipens stop the anaphylaxis but usually only for 15 mins or so if it's a severe reaction (this is what my immunologist told me) I have packets of fast acting antihistamines (benedril 15 min) and I take them quickly. I also carry a bottle of piriton for my son.

You can buy epipens (or the equivalent) online there is currently a massive shortage within the NHS however which is probably why your GP is refusing.

The good news is that artificial colourings is fairly easy to now avoid (was much harder when I was a child). Obvious things like sweets (a lot are now artificial free but not all), frozen ice pops, certain fizzy drinks, Indian and Chinese takeaways can be difficult - Chinese any sweet and sour, chilli dish will have it, Indian is dependent on the takeaway I have always found sagwalas to be safe but tikka/some baltis and pilau rice is generally a no no.

You get very good at scanning labels it's worth knowing the E number and other names for it though as it's not on the EU 14 allergens so is never bolded.

@rainkeepsfallingdown

A sudden drop in blood pressure as it appears the OP's DD has suffered can absolutely result in death!

We've always been told that if you are in doubt as to whether the epipen should be used or not always just use the epipen. It's not going to harm if it wasn't necessary but wasting time can be fatal. And who gives a toss about the cost, it's £50 versus a life!

I am actually quite concerned about the amount of really quite dangerous misinformation on this thread.

@clipclop5 I think your best bet is to contact www.anaphylaxis.org.uk and try to speak to a different GP.

I also had really good advice on the allergies board on here, when I had my last and worst reaction to prawns - I ended up printing out a bit to take to the GP, as it was so helpful.

I wonder if it might be better to repost your question on the allergy board and get this thread taken down.

I wish you loads of luck and strength

@HazeyJaneII

I am actually quite concerned about the amount of really quite dangerous misinformation on this thread.

@clipclop5 I think your best bet is to contact www.anaphylaxis.org.uk and try to speak to a different GP.

I also had really good advice on the allergies board on here, when I had my last and worst reaction to prawns - I ended up printing out a bit to take to the GP, as it was so helpful.

I wonder if it might be better to repost your question on the allergy board and get this thread taken down.

I wish you loads of luck and strength

Totally agree with this.