New EpiPen TV ad . . .

[lakeswimr]

I'm not sure, CM, but I know that many who don't carry are doing so because they lack proper info.  many of the quotes of people who lose loved ones say almost the same thing, 'we didn't know', 'no one told us', 'we thought the past reactions were minor', etc.  I think that's the bigger issue IMO than people who know and choose not to carry.  I would bet almost all who don't carry lack proper info and proper info is scary so I'm not sure we can dance around the facts. The facts don't have to be slammed in someone's face, but they are the facts still and must be known for someone to truly understand why carrying always is important.

[lakeswimr]

I guess I am not thinking of this as a case of 'slacker moms'.  the idea I'm reading in  Boo's very well-written blog is that 90% of parents of kids with ana are 'slackers' who have all the same info we have and are just slackers so don't carry the epi.  I don't think that's it.  I do not think most are 'slackers'.  I think most have not had their doctors make things clear to them.  We know pediatricians and general docs and ENTs, GI docs, etc often do not give proper info to patients and even allergists who do not specialize in FAs don't always give the correct info.  heck, even TOP allergists don't always have TIME to give as much info as patients need.  I think most of these parents lack info, not the will to protect their children.  And who gives the info is important--carries a lot more weight when it comes from a doctor than us. 

I see people who post advice to others and they say the same things I say but in a much more effective way and I think there is really something to that.  I would love to be able to present ideas as eloquently as they do.  I'm more of a blunt typer on the internet (not very blunt IRL, though--IRL personality pretty different than online because of the whole difference between talking/typing.)  I do think Boos point of HOW we make our points is important.  I think pussy footing around the facts to the extent the add did is not helpful.  I do not think it would have an overall net gain of people getting proper treatment.  I could be wrong, though.  Boo's posts and blog are very interesting.  I think it is maybe the best blog I have seen so far on FAs. 

[socks on a rooster]

Yes, physicians do need to do a better job of prescribing and educating parents how to use epi pens. It's fairly easy though to tell in conversation when a parent doesn't have the information, and when one actively resists the information. 

I know someone who watched her child turn blue as a toddler and she sends her elementary aged child to amusement parks without an epi pen. This is someone with a medical background who has the information. I agree with CM, it is abject denial based on fear.

[Mfamom]

I agree that trying to scare people doesn't seem to work. 
"my son has mild allergies",  "benadryl always works", etc. 
I definitely don't think people believe it could ever be "them".
I really think it has to be coming from the medical community upon dx.  Carry your epi pen at all times....a walk to the park, at friends houses, etc. even if you don't plan on eating anything.  here's how it works with a demonstration etc.  tell them when to use it etc.
followed by an allergy plan etc. 

I really think that a more direct ad plan giving statistics xx percent of people diagnosed with fa don't carry their epi pens.  explain the importance (allergies are unpredictable, etc)

[lakeswimr]

That's scary, Socks.  That kind of person blows my mind.  But I still wonder if they were adequately told what they should be doing.  Yes, they should know but we all see that having an MD doesn't = knows how to handle FAs.  I know a person who sends her child to non-food events without epis. The child has had severe reactions.  I once saw the child eating candy at a non-food event given to him by someone!  However, this person does not have a good allergist due to insurance coverage.  So, she has not had the same type of medical care others with better allergists have had and I know this allergist tells people benadryl can stop ana and other misinformation. 

I think there is a serious lack of correct information and so the idea of patting people on the back who lack correct info and not wanting to scare them with actual correct info (not that Boo is saying that but it could be taken to that extreme) scares me.  If anything I think these people need much more info, not less.  Yeah, we should try not to scare them in the process and try to make them feel empowered but we shouldn't shy away from the facts while doing this.

[Mfamom]

I think the root of the problem is "what is the correct information?"  Lots of different opinions about necessary lifestyle modifications, some doctors are onboard with avoiding may contains, others not.  Some doctors may still say benadryl first, epi pen if additional symptoms start, others say epi sooner than later.  There isn't a standard.
As CM said, people have different tolerance levels as well.  for the people who "think" that benadryl resolved the reaction (most are self resolving), what will change their mind that a different action might be better?

I think that there needs to be some sort of "standard" set for initial education etc.  At a minimum, stressing the benefits of always being prepared with epi pen, how to use it and when to use it. 

[lakeswimr]

There is still some basic agreement. There NIH came out with guidelines which eliminate a lot of possible arguments.

I think there is a basic level of info doctors should give but many do not know to give such as that the epis should always be carried, the person should always be with someone who knows the signs of ana, the emergency plan and how to use the epi pen.  The person should receive a clear, written, emergency plan at least somewhat similar to the plans put out by FAAN, FAIII (sp?), Dr. Wood, etc.  Avoid may contains already is mainstream advice recommended by all food allergy organizations, etc. The fact that some allergists do not recommend it doesn't change this. There are some exceptions such as my son who can eat some forms of milk and can now eat some things that say, 'may contain milk' but this is *general* advice.  Avoid bakery food if allergic to milk, eggs, nuts.  Avoid Asian food with a peanut, nut, sesame allergy, etc etc.  Read every ingredient label every time.  Call companies if have non-top 8 or if want to be sure no x-contam since x-contam labeling is voluntary.  The need for and how to be careful at restaurants., etc. Past reactions do not determine future ones and reactions can change.  Hives upon ingestion = possible future anaphylaxis and reason to carry epi. 

People shouldn't be dying because they  didn't know Chinese food was risky with a peanut allergy, that their past reactions when they 'just got hives and some minor breathing trouble' meant they should have and use epi pens, because they waited to long to epi, because they thought epi was dangerous, because they didn't know bakery cakes had risk, etc, etc. 

I think there already is a pretty set standard of info that if we look at FAAN's website and books sold there and those at kids w FAS and FAIIII (sp?), Ana Canada, etc, will all agree upon 98% of the time. So, saying there isn't full agreement is not really true.  There isn't ever going to be full agreement but there are basic recommendations that aren't making it to pediatricians and ENTs and GI docs and even some allergists and are not making it to all parents of food allergic kids and adults with FAs.  Most people at kids w fas have stories of it taking multiple doctors before getting a proper diagnosis and correct info.  I went through 3 doctors including one allergist before the 4th doctor finally gave us the correct diagnosis.  I was working hard, reading, asking all the right questions, researching, and got bad and incorrect info from those 3 doctors and many books, etc.  It wasn't for my lack of effort. 

[CMdeux]

There have only been good practice parameters for Food Allergy within the last few years, though.  Mfamom is correct-- this hasn't been part of most allergist's training in the past, nevermind that of general practitioners.

However, with that said, we've had two different allergists (including the current one) use us (with our permission) as poster children for what GOOD DAILY MANAGEMENT should look like.  That is, avoidance, planning, and continuous access to the emergency failsafes.

I've seen those allergists' frustration that even my DD's history and all the prodding in the world from the allergist... don't get through to those parents (and to be clear, we're talking about people who work in the medical profession and should really know better).

THEY DON'T WANT TO KNOW.  Truly.

[lakeswimr]

I just have not seen as many of those types.  I usually see people who haven't gotten the right info in the first place.  But there could be a lot of people like you describe as well.  I really can't understand them at all.  You think it is that they don't want it to be real so they bury it in their minds?  I think medical people often seem to think they know things about FAs they do not.  I think it can give some a false sense of, 'oh, I already know that' so they may be more likely to have a gap in knowledge than those of us more open to learning. 

These things may not have been part of allergist's training but anyone in the field has a professional obligation to keep up with the field.  I had to switch pediatricians because our old one hadn't kept up with the field since, oh, the 80s!  Allergists should read journals, attend conferences, and stay up to date as they can.

[hezzier]

I think it has be a combination of both types.  After DS had his first reaction, we followed up with a pediatrician (did not care for him and he had a nut allergy) and gave us a prescription for the epi.  Did not think we need to see the allergist.  I left dumbfounded by the whole appt, he rough-housed with DS the whole time so it was very hard to have a discussion with him.  When I got home, I called and left a msg for our reg ped and asked for a referral to an allergist.  And our first allergist gave us some bad advice (not about epis, but about taking sesame out of DS's diet with no known reactions).  I didn't find out that this was bad info until months later when I asked a question of an allergist at an allergy information fair.

So some who don't get the right info the first time, may not know to keep pushing.

I also think some have their head buried in the sand.

[Momcat]

http://blogs.babycenter.com/community_buzz/04232012-epipen-ad-pulled-after-parents-protest/

[GoingNuts]

The response I received from FAAN today:

Hi Amy,

How are you? Thank you for email last Wed.  FAAN was communicating with Mylan all last week regarding the commercial and took concerns very seriously.  I’m not sure if you saw FAAN’s official response on Friday, but I’ve copied it below for you to read.

The Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI) are pleased that Mylan Specialty has decided to immediately discontinue its controversial EpiPen® television ad (‘’Max’s Birthday’’). A small number of these TV ads may run over the next few days because of unavoidable scheduling issues.
 
Mylan Specialty’s decision followed discussions with FAAN, FAI, and other leaders within the food allergy community, who expressed concern the ad did not convey that strict avoidance of food allergens must be the first line of defense in preventing a food allergic reaction. While epinephrine auto-injectors can be life-saving in the event of a severe reaction, every effort must first be made to avoid this medical emergency. The simple fact is that until we find a cure, strict avoidance of problem foods is the only way to prevent a potentially fatal reaction.
 
From our conversations with Mylan Specialty, it is our understanding future EpiPen campaigns will clearly communicate this crucial information, as they have in the past, and both FAAN and FAI have offered assistance to avoid future issues. We look forward to our continued cooperation and discussions with Mylan Specialty based on our shared commitment to the food allergy community and to building awareness of the seriousness of food allergies.
 
 

Please let me know if you have any further questions at all.  I hope you had a great weekend!

[GoingNuts]

Wow Momcat, so nice to see supportive comments for a change!

[booandbrimom]

Boo's posts and blog are very interesting.  I think it is maybe the best blog I have seen so far on FAs. 

Oh man! High praise indeed.  (Seriously...thank you.)

I do not think all these people are uneducated. I do not think they are all in denial. I do not think all their kids have only had mild reactions. There are just some moms who are unmotivated by fear, or who are motivated by social concerns that are stronger than the fear.

I think they are playing the odds. Yes, kids can die from food allergies but very few do. Thank God! But that's the reality. They can almost always not carry an Epi-Pen and their kid will either have a mild reaction that requires only Benedryl OR the ambulance will get there in time.

There's a social cost and a stigma from allergies. Allergic kids are not cool. Allergic moms have a not-great reputation of sometimes being over the top. Allergies lead to teasing and exclusion. If a mother could avoid all that and the risk of death was very low (and it is), I can see why she might want to. Apparently a good percentage of them want to.

The mom in the commercial was very cool. Young. Skinny. Nice make-up, clothes, jewelry. Looked like an SUV. Max/Jake popular boys names. All the cool trappings were there.

Remember how many people refused to wear seat belts? For some of us, the fear of accidents was great and wearing a seat belt was always a no-brainer. For others, it was uncool and they probably weren't going to be in an accident anyway, right? It took a law to get (mostly) compliance.

There are always glass-half-full people and glass-half-empty people when it comes to risk. You have to market completely differently to the two groups. It's unfortunate that there are virtually no other marketing efforts to this other group because, as long as the percentage of them is so high, people will continue to believe we overreact, rather than that they under-react. Showing them the news stories of dead kids would make no difference. The news channel does that every night. They're aren't wired to personalize it.

[CMdeux]

Right-- their brains automatically go to "Oh, that is for those people.  Not me."

It's a weird diversionary loop in their thinking.  I've seen it happen with my own two eyes, and it's really an amazing thing to see in action. 

It's this strange thing that is the opposite of catastrophizing, which is what the over-the-top (okay, probably borderline mentally-ill) parents do on the other end of the spectrum.  Those are the parents who have never seen their child have a reaction-- ANY reaction-- to anything-- but "just to be sure" have them blood-tested with a "panel" of allergens... and carry autoinjectors (multiples) for those "found" allergies, call every manufacturer, make it their mission to have all of the child's putative allergens removed from play-groups, daycare, preschool, etc...

I'm not sure which of those two groups is in more need of intervention, nevermind which one is more resistant to it. 

Both are cognitive distortions in some respects, but both will always result in anecdotal evidence to support the beliefs, as well.  In the first group, the odds are in their favor anyway for never having it happen to them, and in the second, well, minimizing risk may be a game of diminishing returns, but by golly, they. are. SAFE-SAFE-SAFE.

This is like the golfer that shrugs at weather warnings and says (rightly) "I've been playing through thunderstorms for YEARS and I've never been struck by lightning. Why WORRY??"

as compared to most golfers who say; "It's a low risk, but it's not worth taking."

Then there is an admittedly tiny group that avoids golf courses entirely and refuses to wear anything containinig metal as a means of avoiding being struck by lightning.  Rational?  Well, probably not.  But they can certainly claim that they are keeping themselves safe from harm, and the evidence speaks for itself.  They haven't been struck by lightning, right?

The real question to ask ourselves is...

where do we PERSONALLY fall on that spectrum?  I'm pretty confident in saying that I'm not so risk averse that I'm playing golf with wooden golf clubs, YK?  But I'm also not playing in FL during severe weather and congratulating myself on the great tee time availability.  LOL.   Okay, probably not the most awesome analogy at some point, here, but you get the idea.