Poll about carrying epinephrine

[SilverLining]

I'm curious about what was the deciding factor in why people carry epinephrine.  If you are the one with allergies, answer for yourself.  If you are the parent, you are still the one who made the decison, so whether you carry for your child, or have your child self-carry isn't important to this poll.

I have allowed up to 7 votes, in case the answers are different for different people.

Please answer based on when you started carrying epi (if you do carry).  So...if you started carrying because the doctor recommended and THEN had a severe reaction, please choose  "carry - doctor recommended (no severe reaction)".

[nameless]

My last anaphylactic reaction was over 20 years ago, but I get hives on my skin from when peanutty/nutty something touches me and the smell/odor stuff me up. No ingestion reactions (mystery or otherwise) for over 20 years.

I always have 2 Epipens on me, 2 spare at home, and 1 spare at work.

I think I have a mid-level comfort zone.

Adrienne

[CMdeux]

DD and I each carry pairs of autoinjectors with us everywhere.  (Yes, I had to use more than one of my accounts in order to vote there twice).

DH does not self-carry-- ever. 

DD and I have anaphylaxis history, and DH most emphatically does not have that kind of history even to overt ingestion of fairly large quantities of either soy or walnuts (his most severe allergies).  He has never had a multi-system allergic reaction to anything, though he is pretty atopic.  DD and I both have.

DH's comfort zone is what I'd call "typical" for someone with FA-- very lax.

Mine is what most people would consider "tight;" I am extremely careful in restaurants, don't eat from buffets, worry about cross-contamination, etc.  I am not contact or aerosol sensitive to shellfish as far as we can tell.

DD's comfort zone, (if one can call it that) is more or less off the charts in terms of caution.

All three of our comfort zones result in moderately frequent "warning signs" in that we have each experienced a mild-to-moderate food reaction from something that we had reason to think was safe within the past 6 to 18 months at any one time.  Almost always these are (in hindsight) the result of cross-contact in processing which wasn't noted on a food label. 

  DD often has mild reactions on a weekly or biweekly basis just in the ordinary course of doing things outside of the house. 

[hedgehog]

I still keep one in my purse for DS.  DS still carries one, even though he finished with desensitization. 

I think this poll will be very much skewed.  Anyone who takes their allergy (or loved one's allergy) seriously enough to be here is much more likely to take it seriously enough to carry their epi-pen.

[SilverLining]

I agree hedgehog.  Within this group, people take the allergy more seriously, and that will mean more people DO carry it then a random sampling of people with allergies.

But, I'm interested in seeing what led to carrying.

~~~~~

For myself.....It was originally suggested by my GP that I carry one.  I did for years.  Then I stopped.  THEN I went into anaphylactic shock.  So, I carry because of the reaction.

Both the GP and an allergist told me I would NEVER have an anaphylactic reaction, because I tested negative and we couldn't pinpont what was causing the hives.  Both believed it was not allergies.  The suggestion of carrying epinephrine was for my mental state more then anything else.  After the anaphylaxis the doctors (and I) felt it was necessary to carry epi.

As for my son....I've been told it's highly unlikely his reactions will become anaphylactic.  But, he carries one because I've seen anaphylaxis.  After being SO wrong about me, the doctor didn't argue when I said I want him to carry.

[hezzier]

DS had 2 anaphylactic reactions about 9 months apart.  No one close to us has allergies so we were completely in the dark.   It took the second one for us to figure out what it was and even then I was in disbelief after DH suggested it was an allergy so I googled "mouth feels funny" and sure enough the first thing that pops up is info on food allergies.  I was shocked.  We were prescribed epis by the pediatrician (who had a nut allergy), but didn't think it was necessary for us to see the allergist.  I left flabbergasted from the appt and left a message for our "assigned" pediatrician saying I wanted a referral to an allergist. 

[Mfamom]

My son had a severe reaction.  I got the epi pens filled on the way home.  But, at the beginning, I didn't always have them if we were not expected to eat or if we were going somewhere we had eaten before.   One day, we were going out to eat and my dh said um do you have the pen thing?  I said no we've gone here 10 million times!  He told me that we should always have it.  Then, when we went back to dr for follow up, he told me to keep it available. 

My ds is 14, he's really good with his allergy managment.  He carries his epi at school and everywhere he goes.  he also has asthma and carries his inhaler as well. 

[booandbrimom]

There needs to be an "I don't know" answer. 

I TELL my kid to carry them. I've even stalked him a couple of times to make sure. He tells me he always has one with him, but I suspect what he means is that he always has one with him when he thinks he's going to eat something.

I've drilled him on the no pen/no eat thing all his life. Will it stick? No clue.

It is so hard with boys! Now the carry technique is coat pocket in winter, cargo shorts in summer. But if one of those things changes (jeans in fall with no coat), where does the pen go? He's rejected all other possible carry methods like leg buddies and belt clips.

I'm going to give him a portfolio case for his summer week-long college event because everyone will be carrying portfolios there, but that's not a long-term solution. He doesn't want to look like a hipster. And all of this is to get him to carry one Epi...no other meds, no back-up.

I guess this reminds me a little of drinking. I know so many parents who say "gosh, I've talked and talked to my child and I know they wouldn't do that! They're just not that kind of kid! I've raised them right!" and then little Pumpkin is stretched out cold by the keg. What you've taught your child and what they ultimately decide to do are two. separate. things. and you're fooling yourself if you think there's no other possibility.

[Mfamom]

My ds wears epi belt at school and he uses a drawstring sports backpack when he goes to friend's houses, bike riding etc.  He has a kit that he brings to sports practices that he puts in a designated place (accessible to coaches etc) that contains his epi pen, inhaler, a peak flow meter, benadryl, scissors, band aids, tape etc. 
he is very good about carrying his epi pen. 

[booandbrimom]

My ds wears epi belt at school and he uses a drawstring sports backpack when he goes to friend's houses, bike riding etc.  He has a kit that he brings to sports practices that he puts in a designated place (accessible to coaches etc) that contains his epi pen, inhaler, a peak flow meter, benadryl, scissors, band aids, tape etc. 
he is very good about carrying his epi pen.

Yes, that's what we did at 14 too.

[MommyOfTwo+1]

DS2 was diagnosed at 3 months.  I've carried his epi and extra epi's in my purse since he got them at 9 months.  Since he was 3 years old he began wearing his epi belt.  When he puts on his shoes to walk out the door no matter what the reason, be it a walk around the neighborhood or a trip somewhere in the car, he puts on his epi belt.  I still carry the extras.  His dr from the time he was diagnosed and given the epi said to keep it at all times.  He has never had a severe reaction outside his pn challenge when he was 4 years old and even then we were able to reverse the reaction with a dose of steroids and double dose of Benedryl.

[rebekahc]

I put the first choice, but there's so much more to it than that.

I was dx'ed and had anaphylactic reactions before EpiPens existed, so I didn't have one until adulthood.  DS was a newborn and we were meeting with his new pedi.  During the family history stuff, I mentioned my PA.  The doc asked me about carrying Epi.  When I said I didn't he wrote me a script right then and there.

DS was diagnosed before he had any anaphylactic reactions, but he was prescribed EpiPens based on his dx, atopy and family history as well as taking into account the fact he hadn't been exposed but was still spectacularly positive for pn & tn.  He has had several anaphylactic reactions since then.

DD had her first shellfish reaction (full body hives and vomiting from cross-contamination) before being dx'ed with any food allergies, but we already carried for DS.  She received her own prescription after her allergy testing.

[CMdeux]

I think that Boo makes an excellent point-- and I wonder how much of this is tied to bullying of FA kids, or just the perception on their part that it COULD leave them vulnerable to bullying in an atmosphere where it is common/routine (some schools have a culture that just plain supports it better).

Boys are harder.  I can recall as a little kid, how much it ticked DD off to be constantly told "Cute Purse!!" about her epipen carrier.  We went so far as to use a star-of-life emblem on it to differentiate it and limit those comments, but I can only imagine how much exponentially worse it would have been to have a boy hearing those things. 

Now at 13, DD doesn't care that she's carrying a "purse" all the time.  But I seriously look forward to the day when autoinjector devices are available which are: a) smaller, b) lighter, and c) generally more discreet/easier to carry.  Her epipen bag weighs almost 3 lbs, what with her wipes, her cell phone, her epipens, and her inhaler.

Does she forget it sometimes?  No, not that we've noticed... but she's a little sloppier about 'just in the neighborhood' than we'd like, certainly.  I truly think that getting kids used to carrying as young as possible is one of the keys here; just like with medic-alert bracelets, by adolescence, it really needs to feel like a part of their self-identity.  Of course, as Boo notes, that is no guarantee that they won't shrug that off as a part that they do not WANT...    We can't really predict or choose what our kids will decide is parental baggage that they intend to ditch in establishing their own identity. 

[booandbrimom]

It's also important to remember that methods of carry can change as their mode of transport changes. The medicine bag worked well when my son was on a bike. It had a natural place on the bike and it wasn't a hassle to include it.

But now, as he's migrated to a car, it's actually harder. The Epis can't stay in the car on most days (and should be with him anyway), so he has to find a place on his person to carry them. I am going to get him the case with the key ring, but it looks like a long...you know...and I know his friends will tease him some. Guys don't carry big key chains. Luckily he's through the worst of the teasing and changing friend groups at this point.

I drilled for two years for him to carry his medicine bag...then two years his bike bag...now his Epi in a pocket. But there are subtle cues coming from friends that can derail even the most ingrained training. All it takes is one innocent comment from a girl and it can all go out the window.

God, I hope the FAHF-2 thing works and we can be done with all of this. It's the shining beacon on the hill for us this summer.

[SilverLining]

Boys are harder.  I can recall as a little kid, how much it ticked DD off to be constantly told "Cute Purse!!" about her epipen carrier.  We went so far as to use a star-of-life emblem on it to differentiate it and limit those comments, but I can only imagine how much exponentially worse it would have been to have a boy hearing those things. 

Elmo used to wear the e-belt, which did have the emblem on it.  That led to a group of older girls calling him "doctor" in a very derogatory way.  It was a group of girls, doing it almost daily, and yes, imo it was bullying.  But, he wasn't telling anyone.  Finally, he physically struck out and got in trouble.  After speaking to Elmo, I went back to the principal and she was NOT impressed with my attitude.  But, words hurt and he didn't have the language skills to hurt them back that way.  He did the only thing he could think to stop them.  (And it worked too.  They did not get in trouble, but they did not want to get hit again.)

Now at 13, DD doesn't care that she's carrying a "purse" all the time.  But I seriously look forward to the day when autoinjector devices are available which are: a) smaller, b) lighter, and c) generally more discreet/easier to carry.

I was showing the new one expected out soon to Elmo.  I expected him to be happy.  Instead, he asked if he could just stay with the epi-pen.  Just as well.....my insurance probably won't cover the new one anyway.