Poll about carrying epinephrine

[becca]

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.

[AllergyMum]

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. 

[lakeswimr]

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.)

[Macabre]

May only select up to 7.  lol

[Macabre]

Carry, had severe reaction, and doctor recommended.

For both me and DS.  So twice I guess. 

[twinturbo]

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.

[SilverLining]

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. 

[CMdeux]

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.

[Mfamom]

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. 

[SilverLining]

 

carry - 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.

[Mfamom]

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. 

[Mfamom]

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..

[SilverLining]

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).

[Mfamom]

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