Criteria for getting epi pen?

[MisschiefMaker]

It seems so random to me. Some of DDs friends have them but they have less allergies than my DD and their blood work numbers are lower.

DD is allergic to the following:
Peanuts
Sesame
Egg
Tree nuts: hazelnut, almond, cashew, macadamia, pistachio, Brazil nuts... basically all of them except walnut.

But no epi because she's never had anaphylactic shock. I feel like she's being punished because we were so sensible when we introduced the allergen - only a little crumb at a time. Yet she's reacted to all of those and trace amounts (eg when touching the outside of a fruit and nut bar).

I know her egg allergy is severe because if I eat cake (baked egg) she gets sick from breast milk. So definitely more sensitive than other egg allergy kids.

How can I convince them she needs an epi??

TIA.

Is you child seen by an immunology team?

Probably because it’s specifically for anaphylaxis and she hasn’t had that reaction. As the previous poster asked: has she been seen by immunology. Epi pens are expensive and doctors typically are reluctant to prescribe things that people don’t need

GPs don't prescribe epi pens unless instructed to by the hospital immunology team.
Have you had any correspondence from the hospital?
Have you asked your GP for a refferal?

There’s being allergic and being sensitive to things. A sensitivity is being sick, a slight rash, an allergy is all those plus swelling, being unable to breath, a life threatening event. Sensitivities can become allergy’s though, and sometimes sensitivity can lessen. If you are still breast feeding you need to be careful, a doctor isn’t going to prescribe an injectable drug that has problems in itself because you ate a cake that affected your child

There would have to be an actual medical need for itno just because you think she needs it

It doesn't just get handed out like that

And please don't go down the 'it's discrimination' route

She's been seen by an allergy doctor previously where her Ige allergies were confirmed.

We have another appointment tomorrow with them. Different allergist this time so I'm wondering if they'll see things differently.

Ask about an epi pen tomorrow. A second appointment does mean they are taking you seriously.

My GP was told to prescribe me and epi pen and didn't. It took two moths to sort. Quite a few bits of the NHS system are creaking or broken.

My DD has allergies. Her face swells up and her eyes go puffy and she gets all body hives, on one occasion she fell into a deep sleep for 2 hours. This was from touching egg - not even swallowing it. Her nut reactions haven't led to swelling, just hives. They are still allergies as confirmed by skin prick test and blood test.

I have no way of knowing if the swelling extends to her tongue or throat because she was too little to tell me. I couldn't see signs that she was having trouble breathing at the time so I don't think that's anaphylaxis right?

The falling into a deep sleep plus the other markers sounds really concerning to me. Look up anaphylaxis signs in babies, as floppiness and sleepiness can be signs of BP drop which is an indicator for anaphylaxis. I've never had airways/breathing problems with mine.

Right but my question is how do they determine when someone has a medical need? If we were in many other countries we would have easily got one by now.

Would a high number on a blood test suffice? If so what is that number?

How old is your DD?

My DC is 2, has had Epi-Pen since 9mths old based on family history and tested allergies.

Have you accurately described what happens when she has nut exposure? Write it down on paper and hand it to the consultant. If she even so much as wheezes on exposure then she should have one in my opinion. Waiting for her to have anaphylactic shock is not acceptable entry criteria.

Mine wasn't taken seriously until I was much older and I'm quite frankly v lucky.

Also ask for an open prescription for junior adrenaline pens, not just the brand. There are a couple others out there such as emerade or JEXT.

Cost should not be the determining factor, rather potential reaction. I'm in the same boat with similar nut and egg allergies. We have four epi pens - 2 at nursery and 2 at home.

The allergy doctor said he doesn't like prescribing epi pens for young children because it makes mothers anxious.

My DF died from an allergic reaction when he was in his 30s, which I mentioned to the allergy doctor because I wanted to emphasize that we have a family medical history. But I think it back fired and he immediately decided I was a nervous overreacting mother.

@Lemmeparticipate thank you so much. I will do this. This is good advice - really appreciate it!

Thanks. I don't think I did a good enough job of emphasising the falling asleep. I will include this in my write up that I give them tomorrow.

Our immunology team sorted epi pens for my dd after she had her first anaphylaxis. Had to have all the training to know when and how to administer the epi pen. It's quite important to know what to look out for and how to use. It's not just a case of being prescribed them. Hopefully you'll get somewhere at the next appointment x

My daughter has only had slight face swelling and hives reactions. She was prescribed an epi pen on her latest prick test (her 2nd, she was 6). The Dr said DD may not ever need it but we could choose if we wanted her to have one or not as the pecan reaction was quite severe on the prick test.

Thanks. This is why it's confusing- it sounds like my DDs reaction was worse than yours and she has a larger number of allergies. However, she's much younger than yours so maybe that's why she wasn't given one.

DD is 18 months and her last appointment was when she was 9 months.

Just a quick update, the doctor today gave her an epi pen. It does seem that different doctors have different thresholds for when they give it.

Waiting for her to have anaphylactic shock is not acceptable entry criteria

^ I agree with this and think it's key. My DD has had moderate reactions to such tiny exposures, I have no doubt that if she were to accidentally eat something bigger like a non-vegan piece of cake (for example) she would be at risk of anaphylaxis.

Anyway thank you all so much for helping me prepare for the appointment. It's a big relief that if she does have an anaphylactic reaction we don't have to wait hours to get her treated at A&E and we can just give her the auto-injector at home.

That's great she's been prescribed.

Can I check that she has 2? And that you've been trained how to use them?

It is absolutely essential that you call an ambulance if you ever use one, but anaphylaxis is a category 1, top priority, call out.

Brilliant that she got the Epipen. Did you get a lesson on how to use it? Did you get a practise pen?

Nobody waits hours in A&E for Anaphylaxis treatment, if you heading for shock there isn't the time. As PP, if you ever use the pen dial 999, you will be a priority.

Glad to hear the update! Just to echo - worth watching vids/doing a trial run. Now that you have the prescription getting repeats will be much easier. They'll need to be diarised for re-ordering. Absolutely ambulance come super fast but also worth noting where your nearest A&E is - ours is v close and so we go directly there if we needed to. Ours were great once they realized what was going on and we were triaged directly and swiftly into paeds when we had a near miss.