I think the next generation of FASers should consider creating an official FA org with no conflicts of interest with FOOD, PHARMA, or schools ... have expert docs & lawyers & patients working together JUST for the good of the FA community.  Pie in the sky I guess.

Recently KWFA had a webinar on Flying With Food Allergies.  The doctor who spoke was a member of the National Peanut Board.  Of course, he insisted that there was no risk of a serious airborne reaction if people are eating peanuts on the plane.  We sent them a scathing email.  Their reply was that the doctor does not receive funds from the National Peanut Board, so even though he is a member he is unbiased.  I thought KWFA was better than that.

Sooooo, they are thinking that this 4 year old girl was just faking it???  Maybe they should read this.

http://www.dailymail.co.uk/news/article-2724684/Nut-allergy-girl-went-anaphylactic-shock-plane-passenger-ignored-three-warnings-not-eat-nuts-board.html

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"Anaphylaxis in the Air: Two Recent Airline Incidents"
http://allergicliving.com/2014/08/21/anaphylaxis-in-the-air-two-recent-airline-incidents/1/

Dr. Matthew Greenhawt:

There is no evidence that has been able to show that such dust circulates.

Apart from reactions where one eats a contaminated food, airline reactions most likely occur from allergen that may accumulate on surfaces. This we know happens in many different environments. On the plane, without being aware, one could potentially touch a surface that hadn’t been wiped down first, and theoretically ingest some level of allergen.

"15 common food allergy myths, debunked"

http://www.latimes.com/ara-8091700101-20140811-adstory.html

Wow.

Some of their source material is a bit dated, don'tcha think??

1981??

Just sayin.

Plus, what a MASH of peer-reviewed and opinion-based source material.  YEE-ouch.   

I am thinking of a few conversations we've had ....



Let's talk about anxiety

When she was five, her allergist espoused the opinion that sending her to school would be "work, but feasible."  He simply didn't believe in aerosol-provocation of systemic reactions.  I knew that he was wrong in DD's case, but no amount of MY opinion was going to budge him.  So I bided my time, and let him SEE that I wasn't crazy or over-reactive.  I graciously told him that we'd have to agree to disagree, because I knew what I'd seen.  We did reach common ground in that he conceded that any environment which was THAT contaminated was probably an unacceptably high risk for eventual inadvertent ingestion anyway, and so it was a good sign to "vacate the location" even if he didn't think that inhalation was a real "risk."  In and of itself, I mean.    I must say that my DH's skepticism a year before that hadn't done much to help my relationship with the allergist at that point in time, either.  Another story, that one.   

After four years of immunotherapy injections, he and his office staff had seen enough weird and impossible things from her that they believed me.    Completely.  Of course, I think that it also has helped that he now has had the personal, delightful experience of turning over a kid with about three times DD's threshold to a school setting, too... so he gets it now in a way that he seriously just couldn't wrap his head around previously.

OIT may not produce lasting effects?

(This really surprised me.  Of course, I probably surprised him by stating baldly that while I respect his opinion, I can't believe that it is 100% correct for everyone.  In fact, I tartly pointed out at one point that I was pleased that physicians are seeing some of the things that I have been hearing from distraught parents for about nine years now.  Welcome to the impossible world of "my food allergy doesn't fit your theory."     )

Docs helping patients to surf the internet

I continue to give back precisely because I will never forget what it was like to feel as though we were completely alone, because even the patient advocacy group that our physician told us about was saying that we must be hysterical, that we COULDN'T really have those needs, etc.

It was the most lonely and isolating experience I've ever had.  I don't say that lightly, by the way.  In comparison, it was MORE isolating that living with T1D, being a family member of a terminally ill loved one, living in a nuclear family with a person suffering from florid psychosis, and living in a highly abusive, dysfunctional home as a child.  MORE isolating.  MORE disheartening.  As noted, I do not say that lightly.

I've never forgotten what that felt like to me as a parent.  Despair-- that's what it felt like.   I would chew off a limb before I would turn my head away and know that by reaching out a hand or just whispering "You're not alone-- it gets better," I could lessen the emotional toll.     This is what family is supposed to do for us-- and it's what so few FA parents do experience with their families.  Being an outsider to EVERY human interaction is so incredibly difficult a journey-- and made more so when you also get the label of "choosing" to be that way, rather than any understanding that you really don't have a choice.

FARE CEO announced his resignation
This whole thread.


KFA 504 8/26/14 webinar with Laurel Francoeur

I will say that I see food industry influence (or the potential to influence) all over the FA world ... whether it's FARRP at FARE & FAACT, corporate sponsors for conferences, industry $ funding research,
etc.  Quite frankly, my opinion is that FARRP should NOT be in a leadership position in any FA org ... FA orgs that claim to represent the FA community should be OUR representatives .... talking/communicating with FARRP and/or industry is fine & necessary ... but it would be best if these cozy relationships were severed.

Even in that KFA flying webinar, Laurel Francoeur pointed out how food industry congressional lobbying negatively impacted the rights that FA families have when flying.  That was really interesting to me & was something that I had not known.

My dd does not currently have low thresholds to any food and industry approach to FA issues would probably work fine for families like mine ... at the same time, I fully trust that CM's dd is as sensitive as described ... when docs or orgs try telling me that those people don't exist or that their reactions are impossible ... a big red flag goes up in my mind.

Research on thresholds, school policy, etc. should be of the best quality ... transparency, integrity, honesty, best study design, a full disclosure of the study's limitations, etc.

This is what I love about meeting people here, too, Links-- I would not have understood the plight of those who have a "non-Top-8" allergen without all of you.  So when I hear "it doesn't matter-- not a priority allergen" from anyone, now that serves as a huge red flag for me, as well.

  

I think that aiming regulation and policy at the median patient experience is morally wrong.  On many levels.  The people who SHOULD be in our minds as policy is debated are those for whom protections are necessary.  Those for whom those protections MUST exist if they are to have any kind of quality of life.  That's the entire gist of ADAA, really, and was the reason for ADA to begin with.  Trusting others to "just do the right thing" was NOT sufficient for those who were out on the edges of the distribution. 

Same thing with food allergy.  The majority are already living pretty normally and without a lot of worry and "separate-ness" in their lifestyle.  KWIM?  Honestly, that's not the definition of disabled, though.  I understand why most people with food allergy don't consider it a "disabling" condition.  I feel that way about my own and DH's allergies.  No question that I would probably never have a reason to invoke ADA on my behalf or my DH's.    DD's experience is profoundly different; so different that she and we might not even be experiencing the same condition, when you get right down to it.  DH and I have no real impairment in terms of socializing, traveling, education, etc. etc.   DD does.  At every turn.

Her life is hard.  Why on earth a few people with $$ where their humanity ought to reside insist upon making it harder still by denying that what she experiences is authentic and not "all in her head" is beyond me.  Well, it's not-- I have faced it every day for nearly a decade and a half, after all-- but it's disgusting beyond words.

The link doesn't talk about contact ingestion reactions at all.  The bias is clear and their objective is as well.  They want to sell peanuts. 

It is true that reactions to 'casual contact' is not that common.  Ingestion reactions are the most common.  But that doesn't mean they don't happen.  They certainly do.  And for those sensitive enough to have a child have contact ingestion ana, etc this web site is not going to make lives easier.  It will cause more skepticism.  I read part of the peanut website as saying if only you could show your peanut allergic friends that they are paranoid and not informed you can eat all the pb you want. 

I'm really not trying to cause trouble with my links    (well except maybe the FARRP & FDA ones b/c I want sesame labeled) ...

so much of what FARE, KFA, etc. have done is great & I really appreciate & they've helped so many & probably saved lives ...

but food industry influence with FA docs & orgs also makes me uncomfortable ... complete transparency is so important.

 


And this is a HUGE, HUGE reason why, in spite of the things it would solve for us as a community here at FAS, we don't allow commercial sponsorship or link-o-rama stuff.  We have no financial disclosures or conflict of interest.  Period.

So that we can say stuff like this-- and talk about it.  Openly and honestly.

Oh, well-- that's nice.  Apparently my child can't have actually HAD anaphylaxis from inhalation.  Good to know.   


Oh-- wait-- they don't actually SAY that it's impossible.  Clever, that.  They just say that it's-- like-- REALLY unlikely, and point out that "coughing, sneezing, and a runny nose" are really all that will happen.

"Peanuts in School Nutrition"

http://nationalpeanutboard.org/health-professionals/peanuts-in-school-nutrition/

Many people fear airborne allergens, but research indicates that ingestion is required for anaphylaxis to occur