Food Allergy Support

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)".

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

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. 

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.

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.

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. 

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. 

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.

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. 

Quote from: Mfamom on May 18, 2012, 08:40:26 AM
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.

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.

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.

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. 

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.

Quote from: CMdeux on May 18, 2012, 10:43:03 AM
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.)

Quote

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.

Other, dd had a milder reaction(no ER, No benadryl, self-resolved, but I knew it was the PB).  Got epi after seeing doc about it.

My son's first "allergist", if you can actually call her that, did not give us a prescription for an epi when she first diagnosed his dairy allergy.  It wasn't until 2 weeks later when he had another reaction to peanuts (may contain ingredient) that we went in again & from my brief amount of research I demanded that she give us a prescription.  Clearly we dumped this "allergist" directly after.  This "allergist" also told me that all we needed to do is avoid dairy, without even giving me any direction or even telling us that  there are many different names for dairy.  It was a nightmare month for us, knowing nothing about allergies, watching my son have a very serious reaction to cottage cheese touching his lip (one that I would have used an epi on today), getting diagnose with a dairy allergy, then having another reaction to a "may contain" peanut. 

I also want to add that we always carry 2 epi-pens.  We always had him self-carry 2 epi's & have 1 in the office, and one day things could have gone terrible wrong if he had only had been carrying 1 with the other all the way in the office.  He was at preschool & had a reaction that needed an epi.  The teacher took out his epi & then proceeded to injected it into her thumb.  He need the epi right away so the other teacher used his second epi while someone else ran to the office to get his third one.  I thank God that he had 2 epi's on him because his reaction was progressing very quickly and time was of the essence to get his medication into him to stop the reaction. 

DS has had anaphylaxis and we carry.  The first pediatrician and allergist didn't think DS had allergies and blew me off and gave me lots of wrong info.  I insisted on an epi (I had a single epi) and the pediatrician thought I was overreacting because, 'kids get hives' and 'kids get swelling' and 'kids throw up sometimes'.  yeah?  Kids have their eye swell up almost shut and hives all over and vomit after eating and it's normal?  First allergist yelled that I was 'just a nervous mother' and that I 'believed urban myths'.  He also insisted Benadryl would stop ana and that epis are dangerous and overused. 

We actually carry 3 because we live a bit further from a hospital than most here.  DS is supposed to carry always at school but because the district didn't let him carry in the past he sometimes forgets.  I have epis elsewhere in the school (classroom and nurse's office) because of this.  Thankfully we have a script that allows for multiple epis.  In the future (soon) I'd like to trust DS to be responsible and always remember them.  I can't picture the day when *I* stop carrying when DS is much older. That will be weird when it happens.  (when he moves out I would guess I won't be carrying any longer.)

May only select up to 7.  lol

Carry, had severe reaction, and doctor recommended.

For both me and DS.  So twice I guess.  :)

I'm the walking medipac. Between the kids and I it's a total of 6 doses, 4 ped + 2 adult. Six huge Epipens is nearly impossible unless I wear them in a bandolier so I carry one considerably smaller Twinject for myself at adult dose and 4 mixed lot EpiPens for the kids at all times. We've all had severe reactions otherwise I wouldn't have to look like I'm shoplifting a pack of hot dogs in my inner coat pocket. I read e-cue had to agree to not release or market its injector until after Nov 15th. Looking forward to having a third option to add to my bulky mix. Not to mention DH needs more options. There's only so much of the huge tubes he can stick in his front pockets without jabbing tender parts or well, the way it looks.

Quote from: Macabre on May 18, 2012, 10:41:22 PM
May only select up to 7.  lol

I know...it made me laugh too when I set it up.  But, since many people here have multiple people in their family with fa's, the answer might be different for each. 

:rofl: twinturbo.... shoplifting hotdogs....


just the whole thing.  Yes.  That.  And I only have to carry two at a time at this point, but I vividly recall the days of carrying four mixed-lot, with two different metered dose inhalers, too.

regarding teen years, I don't think I'm going to have difficulty with my son.  He doesn't really care about being cool, he wants to have that epi pen and inhaler with him.  He knows by experience how bad anaphylaxis and even an asthma attack can be. 
He also has tremendous peer group.  They all are so considerate/aware of his allergies.  Even kids who didn't go to elem. with him.  They are mindful of his allergies.  Even his baseball team for many years would go to Rita's (not that convenient) without us asking so he was included (there is DQ and another local ice cream place in town)

He's at a Bar Mitzvah tonight.  He has his twinject (it comes in a tube that has a metal clip sort of like a pen) he has it in the pocket of his shirt.  He is not a risk taker by nature...he's done a really great job so far with being responsible about his allergies. 

He's 14, but he's more mature than a lot of his friends both mentally and physically.  I don't think we're going to have a big change in his personality etc at this point. 

 

Quotecarry - had severe reaction - 27 (61.4%)
carry - doctor recommended (no severe reaction) - 10 (22.7%)
carry - someone (not doctor) recommended (no severe reaction) - 2 (4.5%)
carry sometimes, when expecting to eat - 2 (4.5%)
don't carry - have NOT had severe reaction - 1 (2.3%)
don't carry - have had severe reaction0 (0%)other - please explain - 2 (4.5%)

I've been keeping an eye on this poll.  The first selection "carry - had severe reaction" has always stayed above 50%. 

While I think more people from this forum carry epi's then people with fa's in the general public, I do think over 50% that carry due so AFTER witnessing or having a severe reaction. 

So, when we read about someone who dies because they don't have an epi-pen with them....it really shouldn't be a surprise.  And I'm guessing most of the doctor recommended are peanut allergy as opposed to other fa's.

I do not agree the ad Mylan did got this point across....someone needs to get some PSA's out.  And I think they need to get more doctors really pushing this.

I agree PSAs about carrying epinephrine are needed.  I just would have preferred that the message would have been put forth a bit differently.  while they were trying to target the population who doesn't carry and also probably takes risks, the ad undoes a lot of what the other side of the community has been working on in school, with family, friends etc. 

i observed him today at his lax tournament.  People EVERYWHERE!  we did venture off our comfort zone a tiny bit because I didn't realize I'd be parking my car 1 mile away and wouldn't really have the option of leaving during the 2 hours inbetween games. 
I let him eat a cheeseburger at the concession stand.  the buns were safe, but they were out of the original bag in a big tin thing. 
I noted that he had his drawstring bag on his back the entire time.  He was playing catch with a bunch of kids from his team and they were asking him why didn't he put his bag by the team's stuff.  he said because I need to know where the bag is and he was worried about someone else picking it up etc.  (today poor choice because its a small drawstring from football and lots of kids have same one)  His has a huge tag on it though with his name etc that helps differentiate his..

I don't think Mylar should be the one doing PSA's.  If they choose to, then they should be hiring someone to do them AS PSA's, not as a sales pitch....and it could end with "this message brought to you by Mylar, makers of the epi-pen." 

But their bottom line in dollars...that's their main concern.  And there's nothing wrong with that.  But, it does mean PSA's is NOT their area.

Anaphylaxis Canada has done some good ones in the last few years.  And FAAN should be doing them (but I don't think they are).

I just watchec part of a short movie out of australia.  Saw link on facebook.  I didnt watch all of it because sucks my phone battery.  Looked well done