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.

Yes I'd buy one. People can be so rude. I'm sorry to hear you're being dismissed.
People's ignorance to allergies really does baffle me.
My DP's friend died of anaphylactic shock at 26. So an allergy is bloody serious and shouldn't be dismissed!
Stop being so rude to someone who clearly is worried and upset.

And for this giving misinformation about expiry dates:

www.anaphylaxis.org.uk/2019/11/15/epipen-0-3mg-auto-injectors-have-longer-shelf-life/

ffs. that is really shit. really really really really horrendously shit. change gp asap.

in the mean time, antihistamines at hand to at least reduce the reaction. cetrizine and piriton can be taken together apparently. (do check as I am just a random on the internet.) but it ws recommended to us for dd by a GP.

My child had a very similar reaction and she was referred to a specialist, who then made appointments for my child to see a nurse for epipen training, she also had an appointment for allergy testing because although we had an idea of what the allergy was from we wasn't 100% sure as she had another serious reaction a few weeks later, so even checking ingredients we couldn't be sure. We are still waiting back for the results which have take months - however , we were given two epipens. I would ask your GP for a referral especially if your child had respiratory problems during the reaction.

@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.

You haven't commented on how this reaction was managed, which suggests she wasn't actually treated with epinephrine. Is that indeed correct?

What you've described doesn't sound like anaphylaxis, more just a bad allergic reaction, which is probably why her doctor hasn't prescribed an epipen and has instead given her a referral to a specialist. Epipens are only given out to people who are at risk of anaphylaxis - they're not given out to everyone with allergies.

Fatal allergies can develop at any time, but then again, so can pretty much any medical condition. You don't walk around with an arsenal of random drugs "just in case".

In the nicest possible way, you sound quite anxious - which I can understand, given this is the first time you've seen your DD react like this, and you're learning how to manage her risk and keep her safe. But that's not a reason to demand an epipen, especially when there have been very real shortages for people who actually need them.

Oh @clipclop5 I really feel for you. DD is only 11 months and she had a severe reaction to egg. Red, itchy welts, eyes all red and puffy, desperately itchy (we only figured this out because she kept slapping her tummy and rubbing her legs on us) I had an appointment with the dietician already as she had a cows milk protein allergy (delayed and very mild) who promised to refer me to the allergy clinic for the egg and that was at the beginning of October. I'm so terrified her next reaction will be worse and nursery will make a mistake and give her something with egg in - we have antihistamine to give her but an epipen would just make me feel so much better because she's only a baby so can't let us know when symptoms are starting. I've removed everything with egg in our house (poor DSS can't even have any mayo with his tuna anymore) but I won't take the risk.

I haven't had anything through from the clinic and it's so frustrating when to us mums it feels like a potentially life threatening situation and everyone else is taking their time.

I really hope you get it sorted soon. I agree demanding is probably the wrong way forward but I would also not take no for an answer. I ignored my intuition and listened to the doctors assure me DD had all the terrible tummy pain from colic and thanks to lockdown we only got her CMPA diagnosed when she was 7 months old - all because I didn't push back and argue and accepted what I was told.

OP, I am also in NI, and my experience has been very different.

DD had a severe reaction to something about 5 years ago - we never did find out what it was, but her mouth and tongue swelled up and we brought her to A&E. Our GP immediately prescribed an epi-pen whilst we waited for more testing.

We went privately through 352 Healthcare. The tests were inconclusive, and we never did find out what she reacted to. She never had another reaction, but even so, our GP was insistent that she have 2 epi-pens, and continued to prescribe them when they expired, even though I told him she hadn't had a further reaction. It was only last year that they stopped.

Good luck - that reaction sounds really scary.

Anyone know if it’s only in the last couple years doctors have become reluctant to prescribe them?

I’ve worked in dental and I know we went through a period of being unable to update our epipena because of a national shortage. It was awful at the time we kept ringing to trace some but they just wasn’t making them. I think a certain ingredient in the epicentre had become sparse so they couldn’t physically produce any! I’ve since left dentistry to have my daughter so I’m unsure if the issue is still ongoing.

www.news-medical.net/health/Tartrazine-Allergy.aspx

It seems that the research into this is limited, but doesn’t show that there are severe allergic reactions. It’s only advised to use antihistamines where it has been ingested, and the use of an epipen is contra indicated. That’s probably why your GP hasn’t prescribed one.

@zaffa

Oh *@clipclop5* I really feel for you. DD is only 11 months and she had a severe reaction to egg. Red, itchy welts, eyes all red and puffy, desperately itchy (we only figured this out because she kept slapping her tummy and rubbing her legs on us) I had an appointment with the dietician already as she had a cows milk protein allergy (delayed and very mild) who promised to refer me to the allergy clinic for the egg and that was at the beginning of October. I'm so terrified her next reaction will be worse and nursery will make a mistake and give her something with egg in - we have antihistamine to give her but an epipen would just make me feel so much better because she's only a baby so can't let us know when symptoms are starting. I've removed everything with egg in our house (poor DSS can't even have any mayo with his tuna anymore) but I won't take the risk.

I haven't had anything through from the clinic and it's so frustrating when to us mums it feels like a potentially life threatening situation and everyone else is taking their time.

I really hope you get it sorted soon. I agree demanding is probably the wrong way forward but I would also not take no for an answer. I ignored my intuition and listened to the doctors assure me DD had all the terrible tummy pain from colic and thanks to lockdown we only got her CMPA diagnosed when she was 7 months old - all because I didn't push back and argue and accepted what I was told.

Zara, you can get Vegan products such as mayonnaise that obviously don’t contain eggs. Maybe your dh could try some of those?

@SimonJT ambulances don’t carry autoinjectors because paramedics don’t need them, they are trained to give intramuscular injections! The ambulance service where I live gives adrenaline plus IV antihistamine and steroid for suspected anaphylaxis.

"OP how do you know definitely that it's tartrazine that she is allergic to?"

@AwaAnBileYerHeid She has been tested for all other suspected allergens which came back negative and has since had reactions to skincare products containing it

@clipclop5 sorry I'm obviously getting confused somewhere. Maybe I've missed a post explaining this but I thought she hadn't seen an allergy specialist? How did she get these tests? Or were they just the standard ones that you pay for from the likes of Holland & Barrett or other such online services? I'm not sure how much faith I would have in these.

@AwaAnBileYerHeid

"OP how do you know definitely that it's tartrazine that she is allergic to?"

@AwaAnBileYerHeid She has been tested for all other suspected allergens which came back negative and has since had reactions to skincare products containing it

@clipclop5 sorry I'm obviously getting confused somewhere. Maybe I've missed a post explaining this but I thought she hadn't seen an allergy specialist? How did she get these tests? Or were they just the standard ones that you pay for from the likes of Holland & Barrett or other such online services? I'm not sure how much faith I would have in these.

@AwaAnBileYerHeid They were blood tests from the GP. They have all since been reintroduced into her diet with no problems

Yanbu.

DS was given one as a pre-schooler after a bad reaction months before he had his allergies confirmed. You don't piss about with potential severe allergies.

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.

Not everyone recovers from egg allergy and sometimes it gets worse.

@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.

@1Morewineplease As DD is 15 things are far more likely to get worse, rather than better. Chances of her growing out of it are slim to none

@BlackeyedSusan

Not everyone recovers from egg allergy and sometimes it gets worse.

Yes, I know this , but demanding an epipen is not the way forward. Sometimes there are alternatives which could have a more positive impact. Epipens should not be doled out as a first port of call.

This does sound like a severe (potentially anaphylactic) reaction and I am shocked by the dismissals of the symptoms. This is clearly a situation in which you would look administer an epipen.

You can buy them privately online but I also second making a much bigger fuss. Some GPs are useless and dismiss allergies without actually having very much knowledge at all.

I know our allergy consultant has been hopping mad at some of the stupid things GPs have tried to tell me over the years.

When my GP surgery were being dismissive about something I asked them to put their justifications in writing so I could run it past a relative who is a specialist.... They very rapidly changed their approach

@1Morewineplease my children see a top allergy consultant and I can assure you he prescribed epipens after 1 reaction (DS) and no reactions but skin prick tests and family history (DD).

@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

@1Morewineplease alternatives such as what? Genuinely curious, not trying to be rude

www.anaphylaxis.org.uk/hcp/what-is-anaphylaxis/signs-and-symptoms/

Anaphylaxis UK has great training courses for parents and medical professionals and it looks like there are a lot of people on this thread who could be benefit from them.

@NeverTwerkNaked

This does sound like a severe (potentially anaphylactic) reaction and I am shocked by the dismissals of the symptoms. This is clearly a situation in which you would look administer an epipen.

You can buy them privately online but I also second making a much bigger fuss. Some GPs are useless and dismiss allergies without actually having very much knowledge at all.

I know our allergy consultant has been hopping mad at some of the stupid things GPs have tried to tell me over the years.

When my GP surgery were being dismissive about something I asked them to put their justifications in writing so I could run it past a relative who is a specialist.... They very rapidly changed their approach

@NeverTwerkNaked Haha, actually a great idea which I might try with our own GP. It is ridiculous how ill informed a lot of them are regarding allergies