EpiPen Experience?

  • This message board permanently closed on June 30th, 2020 at 4PM EDT and is no longer accepting new members.

hipmamajen

Rebel Rebel, your face is a mess.
Apr 4, 2008
4,650
6,090
Colorado
My 12 year old son, Tiernan, recently had an anaphylactic reaction to peanuts. The doctor set us up with the EpiPen, and we have 2 at the moment.

Fortunately, he is old enough to avoid peanuts fairly well. They still joke at church about the time he quizzed his Sunday School teacher, demanding to know if she was absolutely sure there were no peanuts in the LEMONADE she was offering!

This exposure was from a Snickers bar in a special "holiday" wrapper that he picked up at the vet's office. The wrapper made it harder to recognize, and looked enough like a safe candy bar that even his Dad didn't see it for the tricksy tricksy evil that it was. Tiernan didn't actually swallow any, he spit the first bite out, luckily. Still, his lips and his poor face swelled right up. Scary!

So, even though we have managed to keep him from getting "peanutted" for so long that his pediatrician thought he must have outgrown his allergy (since there haven't been any reactions since he was a toddler) it's apparently going to always be an issue.

So, these are my questions...

How many EpiPens should I keep around? (I have 2 now, but can refill them until I have as many as we need to feel comfortable.)

Where are the best places to stash them? Obviously my purse and the diaper bag are good, since he's usually around one or the other. But, any where else you can recommend?

Since we homeschool, he's with one of us a lot more of the time than kids in school would be. But I would still like him to have one with him when he's out on his bike, or at someone else's house. I've seen a few different carriers, but they aren't as convenient as tossing one in a purse. Either I need to get him to carry a manpurse everywhere (you know, like Indiana Jones) or I'd love to find something like an ankle holster. He'd wear that everywhere! Have you seen anything like that?

At his age, would he be able to administer the shot himself if needed? When do kids manage that on their own?

Is there anything else I should be doing/planning/considering?

I already ordered a medic alert necklace for him, it should come soon. He and I looked at all the options out there and picked one he liked and would will happy to wear 24/7. It looks like a military dog tag.

We also saw shoe and keychains, should I order extra ones for him to carry in case the first one isn't obvious? I have considered tattooing his forehead with the relevant information, but I'm concerned it will make it harder for him to get dates. And no dates = No grandchildren, so that's no good!

Like I said earlier, he's with the family far more than he isn't, and he's a lot older than many kids doing this for the first time. So, we are very fortunate. But it still scares me, and I want to get all my ducks in a row as quickly as possible...
 

blunthead

Well-Known Member
Aug 2, 2006
80,755
195,461
Atlanta GA
I don't have experience with EpiPens; nevertheless I'll offer a few thoughts. I think a twelve year old can be trusted to self-administer such a medication, especially a child as aware of his own health as your son. I'd keep one in each vehicle you and hubby drive, in the house wherever you'll first think to find it, one in your purse, and your son should carry one with him everywhere. So that amounts to at least four of them immediately on hand. I'd probably keep two backups.

Anaphylaxis - Wikipedia, the free encyclopedia

Epinephrine autoinjector - Wikipedia, the free encyclopedia
 

Spideyman

Uber Member
Jul 10, 2006
46,336
195,472
79
Just north of Duma Key
He should absolutely carry one on his person, whether at home or otherwise away. At age 12, he is more than capable of using the pen. I've taught pre school children- 4-5 years old and had some using the pen themselves. An adult may not be available if/ when he is need. He just needs to be instructed on the proper use. Has he considered a belt carrier? You can never have enough pens. Make sure each family member know where they are being kept.
 

GNTLGNT

The idiot is IN
Jun 15, 2007
87,651
358,754
62
Cambridge, Ohio
...six at minimum, and with the locations mentioned...not sure of how your house is set up....but I would keep one on each floor and in the garage if you have one...12 years of age is plenty old enough, especially with the ease of auto-injectors...
take-in-case-epipen-carrier.jpg
certainly a nifty way to carry one

....or on a belt.....
The-Best-EpiPen-Case.jpg

...and they have them for backpacks...

city-series-images-with-logo.jpg
 

AnnaMarie

Well-Known Member
Feb 16, 2012
7,068
29,564
Other
While it's funny about the lemonade, there is an orange juice with peanut protein in it. I'd have to look up the brand, I only remember it says "heart healthy" on it.



My son carries an epi-pen, I carry one, and there is one in the office at school. I have food allergies, he has insect and mould allergies.

You also have a younger son, so keep them out of his reach. ( I'm not being patronizing, most often it is the little things that trip us up.)

T is definitely old enough to be taught how to self administer BUT don't expect him to. I would not have been capable for a variety of reasons. I couldn't walk straight. I looked drunk, staggering all over the place. I didn't know it was an allergic reaction. I wanted to go home to bed, but it came out hospital, at which point I shrugged and figured they have beds there.

Anaphylaxis can also cause shaking, if it's severe enough you physically cannot give it. Also, since thinking can be affected, he may not remember how, or he may not even realize he needs it.

Also, I would recommend all older siblings be taught how to administer it. You can get a trainer. I'm pretty sure they are free in the US. It's like a real epi, but no medicine and no sharpie. Also, a different colour so it doesn't get confused.

Very funny story about my son at four being taught to use the epi on Elmo....but anyway....

I'm going to add in the links I already gave you, in case some might be useful to anyone else here.
 

fushingfeef

Finally Uber!
Aug 14, 2009
10,194
21,965
Pittsburgh, Pennsylvania
How odd, I was just reading up on this topic this morning, as I am mildly allergic to cashews and pistachios (hives on the lips) but not any other types of nuts or peanuts. I found out that the skin of mangoes can cause anaphylactic shock in people who have nut allergies. Be on the lookout.

Like others, I would suggest keeping one in your car--no matter where you are, usually your car is with you.

There are auto-injectors such as the Auvi-Q that make the process easier.
 

AnnaMarie

Well-Known Member
Feb 16, 2012
7,068
29,564
Other
This is USA, so I'm not sure how it work, but you can get 0-copay for epipens and auviQ. I think that means completely free, but I'm not really sure.

2014 Patient Assistance Resources for Epinephrine Auto-Injectors | FARE Blog

This is the AuviQ. It's an auto-injectable epinephrine, but fits in a pocket. And it talks you through it, step by step.

Epinephrine Auto-Injector | Auvi-Q™ (epinephrine injection, USP)

~~~~

Whichever you decide to go with, get the trainer to teach people and practice. And when the real ones expire, use them on fruit. I recommend orange or grapefruit. I think they feel most like injecting into a human (it's the fruit that was recommended for diabetics who are insulin depended to practice on). But DO NOT HOLD THE FRUIT IN YOUR HAND. Put it on the table, in a way it will not roll. If you hold it in your hand or lap and slip, you inject yourself.

Also, do not "swing and jab" when using an epi pen. Hold it firmly against the thigh and give it a jerk.

Many accidents occurred with the old instruction of swing and jab.
 

AnnaMarie

Well-Known Member
Feb 16, 2012
7,068
29,564
Other
Do not leave it in the car. Temperatures get to hot and it probably won't work if needed.

From epi-pens website

Storing the EpiPen Auto-Injector
EpiPen and EpiPen Jr® (epinephrine) Auto-Injectors should be stored in the carrier tube provided at a temperature of 25ºC (77ºF); however, temperature excursions between 15ºC and 30ºC (59ºF to 86ºF) are permitted.1 EpiPen and EpiPen Jr Auto-Injectors should not be stored in refrigerators or in a vehicle’s glove box.1,2 EpiPen Auto-Injectors should not be exposed to extreme heat or cold2 and protect from light.

Also, if it's in the car by habit, you won't have it with you when you are walking through the mall and have a reaction.
 

EMTP513

Well-Known Member
Oct 31, 2012
503
1,923
If you use it, you have to call 911 anyway because it causes the heart to speed up so much that they want it monitored.
I had a reaction to a stupid wasp that decided to sting me TWICE instead of just once. I don't know why it stung me the first time much less why it had to do it twice.
I'm also allergic to something unknown that they never did discover what it is.
I have high blood pressure too. If you have high blood pressure, it's even more imperative that you call 911 after using epinephrine/adrenaline. They're the same thing. Also if you have any serious disease like Asthma, Diabetes, HIV, anything of that nature, you'll need to be more concerned with complications; i.e, call for help after using an epi-pen and tell them if you have any immunocompromised conditions like the ones I've already mentioned.

What I really don't like is that at school the teachers take away asthma inhalers and epi-pens. When we arrived to treat a school-age child having an asthma attack, I asked why they keep it at their desk or, worse, at the office and the teacher said it was the "school's protocol."
I said "Well unless they've decided that their protocol is going to be increasing a student's chance of dying in an asthma attack - when it's really severe they can't exactly ask for their inhaler (if you're not breathing you're not going to be talking) - I suggest they let the student keep the damn thing. In fact in this case if the student had been in possession of his inhaler he could have prevented the need for an ambulance coming at all.
This is a raging medicolegal screw-up (as in 'first thing we do, kill all the lawyers' and improve society) that's been going on too long IMO. The doctors agree with us, the teachers do, but the attorneys working on behalf of the school's legal interest want to cause a problem on account of they're too obtuse to KNOW how serious the issue of asthma is.
They need to listen to the doctors who agree with us that you should not be taking away their inhalers and epi-pens.
 

AnnaMarie

Well-Known Member
Feb 16, 2012
7,068
29,564
Other
We are fortunate that most schools here allow students to self-carry even if they cannot self-administer. In fact, I wanted the teacher to keep it in her desk and the school said no, he needs to carry it so it is always with him. He was 4 or 5 at the time.
 

hipmamajen

Rebel Rebel, your face is a mess.
Apr 4, 2008
4,650
6,090
Colorado
Let me just say again that you are all amazing, awesome people! Thank you!

The epipens came with a trainer. I wouldn't have thought to have the older kids practice, that's a great idea!

I used to have migraine medicine that came in a refilled auto injector. But there was no real hurry when I had to shoot myself, so I could use an ice pack on the spot for a couple of minutes to make the injection less noticeable. Hopefully we never need to use the EpiPen on Tiernan, but if we do it will be weird to have to do it quickly.

AnnaMarie, "swing and jab" made me giggle a bit, because it reminded me of the adrenaline-to-the-heart scene in Pulp Fiction. That's also good to know. Memo to me: Don't pull a Vincent Vega...

Also, you should tell us the Elmo story. It sounds like a good one.

GNTLGNT, that leg holster is perfect! Yay!

EMTP513, that would really disturb me, too! We homeschool, so we don't have to worry as much on that end, but he's away from us at church and Scout activities, so we need to bring them up to speed.

My special friend Alysia (who passed last year :( ) had problems with some of her equipment when she was in school. He mom raised Holy Hell and she was allowed to keep everything after that. Even her phone. Now most schools don't fuss about phones as long as the kids aren't messing around in class, but they used to forbid them.

That changed pretty quickly because one of the school shootings here. A girl was able to text an "I love you" message to her family before she was murdered. After that, I don't think the administration had the heart to separate kids from their phones.

So, do all EpiPens have the same amount of medicine? Like if we saw someone else having an anaphylactic reaction, could we stab the with Tiernan's injector while we were waiting for the ambulance? Obviously you don't normally share medications, but I would be grateful if someone did that for me or mine in a pinch...

Thank you again. I was really worried, but you've given me a lot of helpful advice and encouragement. I love the SKMB!
 

Dana Jean

Dirty Pirate Hooker, The Return
Moderator
Apr 11, 2006
53,634
236,697
The High Seas
My youngest son has a peanut allergy. A life and death peanut allergy. This isn't any messing around with an itch or hives, if he's exposed, we hit him with 50 mg of benadryl and the epipen and call the ambulance.

Our doctor also said that he might outgrow it, but 10 years + down the road, we tested him again and his titer hasn't changed a bit. It's scary knowing that he could kiss a girl who just ate something peanutty and he could have a reaction. But thank all the powers that be, we have never had to use his pen in 16 years.
 

blunthead

Well-Known Member
Aug 2, 2006
80,755
195,461
Atlanta GA
My youngest son has a peanut allergy. A life and death peanut allergy. This isn't any messing around with an itch or hives, if he's exposed, we hit him with 50 mg of benadryl and the epipen and call the ambulance.

Our doctor also said that he might outgrow it, but 10 years + down the road, we tested him again and his titer hasn't changed a bit. It's scary knowing that he could kiss a girl who just ate something peanutty and he could have a reaction. But thank all the powers that be, we have never had to use his pen in 16 years.
Good job teaching, following up and monitoring, Deej.