Is there a Reason Not To Carry an Epi-Pen on your Person (warning sad story)

[sste]

I don't have a food allergic child but recently met a former colleague who had attended a work party at a partner's house. One of the firm's consultants had a peanut allergy and apparently ate something with peanuts in the catered meal. He realized what had happened and went to his car where he had left his epi-pen. He was found dead in his car. Ironically, the partner hosting the party had a child with a food allergy so there was ALSO an epi-pen in the house.

Anyway, this story made me think that allergy management should focus on having children so trained, so ingrained to have their epi-pen on their physical person (ideally not in a backpack but in their clothes) so that not having the epi-pen would feel like walking outside undressed or something. That it would be completely ingrained to carry it on your person. It seems to me that the goal should be starting in the preschool years to make carrying the epi pen a lifelong reflex - -even before the child can physically use the epi-pen on themselves.

Do parents of kids with allergies do this? Or is there something I am not understanding about epi-pens and allergies? Is it an issue of active play and the child potentially sticking themselves accidentally? Can some clever etsy mamas come up with a carrying pouches or customized pants pockets or something? I was horrified by this story. :(

[Melaine]

That is horrible.

[pinkmomagain]

My nephews have fanny packs for their epipens, but I don't think they wear them ALL the time.

[Laurel]

Horrible story. I think like anything else, it is easy to get lax about the epi pen, esp. when there has not been a life threatening reaction in the past. A family member doesn't even carry one for her DC, even though the ped prescribed one! I love her and think she is a wonderful mom, but this makes me so scared.

I know I have heard of epi-pen carrying cases somewhere. I bet the moms over at Parents of Kids with Food Allergies have some creative ideas.

[sste]

I guess what I am getting at is that if you asked a safety or total quality control management or systems consultant how to best ensure safety, wouldn't the top of the list be to ALWAYS have the epi-pen in your clothes, preferably attached to clothing or encased within the clothing. And the key to always having something with you is to ingrain it from such an early age that is a reflex, a habit, something that you have done so often that would feel physically agitated if you didn't have your epi-pen in your pants pocket or didn't have your fanny pack on or whatever.

But, again, I don't have a child with an allergy and maybe there is something about the situation or school rules that I am not seeing.

[Laurel]

But, again, I don't have a child with an allergy and maybe there is something about the situation or school rules that I am not seeing.

Many schools will not allow a child to carry the epipen on them. Some even make them keep them in a locked case!

[DietCokeLover]

Many schools will not allow a child to carry the epipen on them. Some even make them keep them in a locked case!

Seriously? That is awful! If I had a child that had allergies that required an epi-pen I'd become "that mom" to that school and fight like heck about that.

[codex57]

Tragic accidents can happen anytime. Even if you normally carry one on you, just like your cell phone, purse, etc, you can forget it or leave it somewhere accidentally.

[sste]

But, even in very warm climates, people don't forget to put on their pants.

I am just thinking that if you start at age 4 or early elementary, and perhaps have a tailor add an epi-pocket or custom tailor each pair of pants or find some other "wear on you" solution, etc. . . . then is there a chance that carrying the epi-pen would become like putting on your pants -- something you just always do no matter what. At the least, it would dramatically decrease the number of instances when people forget their epi-pen or purposefully leave it in a desk or car . . .

[pinkmomagain]

I can easily see why kids would not be able to carry it around with them at school. It could easily be misused in the wrong hands...and it is a serious medicine that requires medical superivision once you've been injected. I know for my dn's, their epipens are kept at the nurse's office.

[egoldber]

I don't have a FA child, but my 8 year old barely remembers to bring her backpack and jacket home. I can see the dilemma for what to do for kids in a school situation. They would constantly be left in classrooms, on the playground, etc. That isn't safe either. Better an epipen known to be in the nurse's office than lost somewhere in the school KWIM?

[ett]

Seriously? That is awful! If I had a child that had allergies that required an epi-pen I'd become "that mom" to that school and fight like heck about that.

I thought that kids could start carrying their epi-pens when they were older and can administer it themselves. Certainly in elementary school, kids do not know how to use the epi-pen themselves so it's probably better to keep it at the nurse's office. Even if you ingrain it into them about keeping it on them, kids may inevitably lose or misplace them.

[sste]

I don't mean that the epi-pen should not be in the nurse's office and with the classroom teacher as well . . . I think I was a little unclear. I meant epi-pen on the child in addition to being in the classrooms, with the nurse, and in all the special classes.

It seems to me that this training of "on your person" starting from earliest memory could be a seriously helpful thing. Even if the child does not/cannot administer it and still goes to the nurse or to the teacher. Even if the epi-pen is EMPTY and is just a dummy to get the child in the habit until they reach an age when they can safely carry a loaded epi . . .

Maybe I am just riled up about this story . . .

[alirebco]

That story is awful, if I knew someone had eaten something allergic to them and left their Epipen somewhere, I would have gotten it for them or accompanied them to their car.

My Epipen plus my Benadryl is always in my purse and my purse does not leave my side since I'm paranoid about it being stolen. If I change bags, I just put it in the new bag. It's like my keys and cell, I always carry it on me.

[mamicka]

a few scattered points, I'm under the weather so forgive me if it isn't clear:
- IME, many kids don't get rx epi-pens until school-age. DS1 didn't need an epi until summer before K
- IME, many adults assume that when the child is wearing the epi, they will be capable of administering it & knowing when to do so. at some point they need to take ownership of that, but it's different for each kid.
- part of the problem with this whole FA issue is that many people think that if they are expected to "do their part" to help keep kids w/ FA safe, it's their business to know all the details/history about the dx & then they determine the validity/seriousness of it on their own. If they don't know all the info it seems that oftentimes their assumption is that the dx is blown out of proportion, so it's seen as "something else to add to my already long list" & eyes begin to roll when they see kids with epi-pens. It isn't easy sending your child into that situation with an epi-pen strapped to their waist.

[MamaMolly]

The carrying rules vary by school, district, town, state, you name it.

Another factor could have been the disorientation that comes into play when you can't breathe or have a sudden drop in blood pressure. Many adults who have described what anaphylaxis felt like (see the After The Epi section of KWFA) talk about not realizing how much danger they were in. It happens so quickly, and you can go from a scratchy throat to full blown anaphylaxis in seconds.

In a perfect world, someone would have gone WITH him to the car, even if he didn't have it on him.

Plus, hate to criticize the dead, (he paid the ultimate price) but you aren't supposed to leave those in extreme temperatures for long periods of time. You can, for example, take it in your diaper bag to the park on a hot day, but there are some people who bring them in a cooler- not chilled, either, just to maintain 'room temperature.' I know some parents on KWFA use the stay-cool bags normally used for diabetic medicines when doing things like being out at Disney for the day.

In his defense, it is also easy to get lulled into a false sense of security. I can count on one hand the times I've gotten home from somewhere and had my heart fall to my knees when I realize we'd left DD's epi behind.

[ett]

a few scattered points, I'm under the weather so forgive me if it isn't clear:
- IME, many kids don't get rx epi-pens until school-age. DS1 didn't need an epi until summer before K


I'm confused as to why they don't get epi-pens until school-age unless they weren't diagnosed earlier. DS2 was diagnosed with an egg allergy at 15 months, and we've been carrying an epi-pen since then.

[mamicka]

I'm confused as to why they don't get epi-pens until school-age unless they weren't diagnosed earlier. DS2 was diagnosed with an egg allergy at 15 months, and we've been carrying an epi-pen since then.

Many (that I know) aren't diagnosed sooner than that.

[doberbrat]

thats a horrible story. honestly, its a "Wont happen to me" mentality.

I have ana rxn to latex. I usually have nonlatex gloves in my van in case I'm in an accident but I rarely carry an epi, benedryl or my inhalers for myself. Honestly, I do well to remember my keys, wallet, and cell phone.

I do a better job carrying dd's epi but frankly, if we're not expecting to eat out somewhere, I dont always have it.

[almostamom]

DS was diagnosed at 15 mos. and I've been carrying his epi since then. I have one in my purse, there's another in the bag DH carries, one taped to the inside of the medicine cabinet in the kitchen, 1 at his private school, and 2 at public school (I insisted that one be kept with the teacher because their room is the opposite end of campus from the nurse's office).

DS, at nearly 5, cannot yet be responsible for carrying and certainly not for administering his own epi-pen. We have chosen a private, nut-free school for him to attend next year for this reason. He will be with one teacher all day long. There are 11-13 students in each kindergarten class. The only other option we considered was homeschooling. The thought of my 5 year old son having a reaction on the playground with 100+ other kids and only 2 or 3 adults scares the hell out of me. I'm afraid no one will notice if he has a reaction, and he won't know what's happening. When he's old enough to be responsible for carrying and administering the epi we can look at other options. Until then, he needs to be in a much insulated environment.

ETA: I am "that mom" at school. ;)

Linda

[codex57]

It's tough. It's sorta like leaving your kids in the car accidentally. Cept with epi pens and kidds, there are even more variables and complications.

[gatorsmom]

a few scattered points, I'm under the weather so forgive me if it isn't clear:
- IME, many kids don't get rx epi-pens until school-age. DS1 didn't need an epi until summer before K
- IME, many adults assume that when the child is wearing the epi, they will be capable of administering it & knowing when to do so. at some point they need to take ownership of that, but it's different for each kid.
- part of the problem with this whole FA issue is that many people think that if they are expected to "do their part" to help keep kids w/ FA safe, it's their business to know all the details/history about the dx & then they determine the validity/seriousness of it on their own. If they don't know all the info it seems that oftentimes their assumption is that the dx is blown out of proportion, so it's seen as "something else to add to my already long list" & eyes begin to roll when they see kids with epi-pens. It isn't easy sending your child into that situation with an epi-pen strapped to their waist.

Cha Cha was prescribed an epipen at 15mos for "just in case." He started preschool at age 3 last year and the teachers have been VERY proactive in keeping it in his classroom, taking it on field trips, along with clear, written instructions on how to use it and what symptoms to indicate when to use it. They've asked me to give them our expired epipens to practice with when they are going through allergy training at least once/year. They assume that Cha Cha couldn't give himself a shot. But maybe my experience with our school is not the norm.

[sste]

What else do you all think will work - - both for young kids and as they age into independent adults and parents can't provide that extra layer of oversight?

If all these kids don't outgrow these allergies, this is going to be a societal problem of massive proportions. My understanding (??) is that there has been a huge increase in peanut allergies.

Aren't we going to need to move toward a more systemic solution both in schools and more broadly in society. Is it creating a system of universal precautions where you treat every kid as if they have a peanut allergy? Is it pants tailored with epi-pen pockets or other innovations? Is it setting up public epi-pens the way we now have debrillators? Others? Some combination?

[gatorsmom]

Aren't we going to need to move toward a more systemic solution both in schools and more broadly in society. Is it creating a system of universal precautions where you treat every kid as if they have a peanut allergy?

But, is it just peanut allergies that are deadly and on the rise? In my limited experience, it's allergies to lots of food groups that can become deadly and are on the rise. How can society possibly create univeral precautions for all the allergies out there? I'm not saying we shouldn't, I just don't know if it would be possible.

I read somewhere that there are service dogs being trained to sniff out allergens that are specifically deadly to the human they are helping. So, the dog would enter a room before the human they are servicing and sniff for their target substances and block entry if something was detected in the air or on a surface. I could see this as a distinct possibility. I know that if I had a child with anaphalactic reactions to a substance, I'd be all over this. Many buildings and organizations are already prepared to work with this sort of setup for disabled people, I would think it would be a realistic solution for people with deadly allergies too.

It might be reasonable to view allergies as a disability and change legislation to protect those with allergies too.

[MamaMolly]

It might be reasonable to view allergies as a disability and change legislation to protect those with allergies too.

For education reasons (in public school only) you can get a 504 plan. I don't know all the details because we DD isn't in school yet, but it spells out exactly what *should* happen in the event of an allergic reaction, precautions that are going to be in the classroom and school, etc. They vary widely, as any action plan would, depending on the needs of the individual child. I think FAAN has samples...


eta: I just wanted to say how much I appreciate the topic being discussed. Until DD's diagnosis I really was uninformed about allergies :bag Bringing these questions to the table to be discussed and debated is informative and important. Thanks!

[mytwosons]

What else do you all think will work - - both for young kids and as they age into independent adults and parents can't provide that extra layer of oversight?

If all these kids don't outgrow these allergies, this is going to be a societal problem of massive proportions. My understanding (??) is that there has been a huge increase in peanut allergies.

Aren't we going to need to move toward a more systemic solution both in schools and more broadly in society. Is it creating a system of universal precautions where you treat every kid as if they have a peanut allergy? Is it pants tailored with epi-pen pockets or other innovations? Is it setting up public epi-pens the way we now have debrillators? Others? Some combination?

Having them available like defibrillators are is an interesting idea. I've often thought that we might very well be in the situation where someone other than my son needs our epi-pen(s). (We are supposed to carry two.)

[bubbaray]

DD#2 has had a number of EpiPens (b/c the doctors don't think that just one will suffice if she has another fish exposure) since she was not quite 1yr old. DD#1 has had an EpiPen for the past year.

I dunno. I have since met a number of adults who are "supposed" to carry EpiPens and don't for various reasons.

Neither of my girls wear their EPs on their person. I guess I will get DD#1 to do this by the end of this year (she's in K). I have mixed feelings about this. I'm actually hoping that she will pass her tree nut challenged before she starts G1.

I'll definitely have to deal with this for DD#2 b/c she definitely won't be outgrowing her fish allergy (and probably not peanuts either).

There are many companies who make EpiPen carriers for belts and legs.

[DrSally]

So sad. I always take DS's epinpen with me. I keep it in my purse. I also have one in the diaper bag if I happen to take the diaper bag. I also keep one in my kitchen cupboard and one in each preschool classroom. DH is not as good about taking it with him b/c he doesn't go with the kids alone hardly at all, so he's not used to it. And, he doesn't automatically carrry a purse. I have to specifically give him a little diaper bag with it in there.

[DrSally]

But, even in very warm climates, people don't forget to put on their pants.

I am just thinking that if you start at age 4 or early elementary, and perhaps have a tailor add an epi-pocket or custom tailor each pair of pants or find some other "wear on you" solution, etc. . . . then is there a chance that carrying the epi-pen would become like putting on your pants -- something you just always do no matter what. At the least, it would dramatically decrease the number of instances when people forget their epi-pen or purposefully leave it in a desk or car . . .

Preschools and many schools make you keep it in a cupboard. Hopefully they'll allow you to keep it in the classroom and not the nurses/director's office.

[hardysmom]

I'm supposed to carry an epi for myself. I've had hives everyday (in the morning) since July. A couple of times my throat has swollen a bit, but resolved on its own. We don't know what allergen is causing the reaction.

Usually, it is in my purse but it is bulky and sometimes gets left behind.

I think if one has had a life-threatening scare, they are probably (maybe?) more on top of it. When you go a long time, I think you get complacent. That may seem strange to people who don't live with this stuff, but it happens. You carry the epi everywhere and NEVER need it, so you want to get dressed up and carry a cute little clutch, so you ditch the epi in the glove compartment...

That may sound stupid, but it is the way it works.

My DH is HORRIBLE about refilling his rescue inhaler even though he has severe asthma. People are weird.

Yeah, maybe if we were trained better as kids... Maybe not.

Stephanie

[AshleyAnn]

I dunno. I have since met a number of adults who are "supposed" to carry EpiPens and don't for various reasons.

:bag:

I'm allergic to bees. I had an epipen and one day I notice it had expired. I never got a replaced it. Its been over a decade since my last sting. I have a million excuses, none of them good.

I'm sure the gentleman in the story also felt like because he's an adult he could keep the risk low and had his rescue device 'close'. His story does make me reconsider my not having an epipen. I'll go ahead and say I'll wake up tomorrow and think 'well its october bee season is over and I'll be inside a lot anyway since its getting colder' and will put it off until spring and then come spring I'll let it go since its been over a decade since my last sting. Adults are bad about taking care of thier health.

Now, if DD had an allergy that needed an epipen I'd have one everywhere you can imagine. My house, purse, both grandmother's houses, in the classroom at school, and anywhere else the risk was possible.

[Nooknookmom]

Tragic accidents can happen anytime. Even if you normally carry one on you, just like your cell phone, purse, etc, you can forget it or leave it somewhere accidentally. I do this all the time. I don't know what i am allergic to yet, but after my most recent episode my doc gave me 2 epi's . I had my 1st reaction @ 15 and my 2nd in January-I need 2 go for testing quick. U bet 1st thing in the am, I an stuffing one in my current purse! Thanks to OP for waking my arse up!! The last reaction scared DD1 to death.

[DrSally]

:bag:

I'm allergic to bees. I had an epipen and one day I notice it had expired. I never got a replaced it. Its been over a decade since my last sting. I have a million excuses, none of them good.

I'm sure the gentleman in the story also felt like because he's an adult he could keep the risk low and had his rescue device 'close'. His story does make me reconsider my not having an epipen. I'll go ahead and say I'll wake up tomorrow and think 'well its october bee season is over and I'll be inside a lot anyway since its getting colder' and will put it off until spring and then come spring I'll let it go since its been over a decade since my last sting. Adults are bad about taking care of thier health.

Now, if DD had an allergy that needed an epipen I'd have one everywhere you can imagine. My house, purse, both grandmother's houses, in the classroom at school, and anywhere else the risk was possible.

DD just got stung by a bee in the park yesterday and we live in the upper midwest.

[MelissaTC]

I know I have shared this before but M's school is peanut/tree nut allergy friendly and we probably have a higher proportion of children with the allergy than most public schools because of the policies in place. All of the students in the school that have the allergy have a fanny pack with an epi pen on them. We have been in social situations with various kids and they have it then too or their parents are holding the pack.