What do you think FAAN should be doing?

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Original:

Over the years I have become frustrated with FAAN. While it's a great idea to have an organization which could advocate for those with food allergies, FAAN seems reluctant to take a stand on the real issues.

I would like to see FAAN:

Advocate the use of 504 Plans for LTFA,

Make press releases correcting misinformation that appears in the media,

Stop treating the "false sense of security" argument as valid.

Advocate for peanut/nut-free airline flights.

Cathy

On Aug 20, 2007

Sponsor fuether research on "highly refined" oils

Advocate better labeling for cross-contamination

Stop accepting money from the American Peanut Council (or at least fully disclose where their money comes from)

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/007469.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/007469.html[/url]

On Aug 20, 2007

Quote:

I would like to see FAAN:

Advocate the use of 504 Plans for LTFA,

Make press releases correcting misinformation that appears in the media,

Stop treating the "false sense of security" argument as valid.

Advocate for peanut/nut-free airline flights.

Yes... ALL of that.

And also treat [i]ADVOCACY WITH THE [b]GENERAL[/b] PUBLIC DIFFERENTLY THAN ADVOCACY WITHIN THE FA COMMUNITY.[/i] Because it IS different.

Particularly the 'false sense of security' thing. Maybe the general public needs a different kind of 'awareness' brought to that issue than FA people do. Teens and parents definitely need to hear a different message than they're evidently getting. So that they don't think they can tootle around without an epipen "because I don't plan on eating anything." FA people need to be hearing "Never, EVER assume that you 'can't' have a reaction anywhere, anytime." And the general public needs to understand that there are times when we NEED their help for basic safety-- not because we can't be 'bothered' to be 'more responsible' for ourselves, but because their behavior can impact us whether we like it or not.

All about 'reduce the risk.' Which for some FA people is an almost inconceivably large risk [i]all the time.[/i] [b]THAT[/b] (IMO) is what they need to be saying instead.

My personal gripe about FAAN has always been that they tend to dismiss MFA as 'oh, that's just [i]you[/i], self-diagnosing. Your doctor will tell you if you [i]really[/i] even [i]have[/i] any food allergies.' Which, of course, really stings when you've already been to one and are staring at a list of foods that includes 99% of what's in your kitchen.

Those with MFA children need to hear something other than "That's just [i]so unusual.[/i] You need to stop self-diagnosing. Most people, even children, are only allergic to ONE food."

That's fine to tell the general public, but I think that the better statement is: "Being allergic to multiple foods is rare and complicates management enormously. You need to be certain that you have the care of a physician that is a board-certified allergist. Check with AAAIA to find out more. It is particularly crucial to be certain of a food allergy diagnosis in children, whose brains and bodies have very specific nutritional needs if they are to develop properly."

Because honestly, you are never going to [i]prevent[/i] some parents from mistakenly thinking that their child is ""allergic"" to seventeen foods, including 'sugar' and 'starch.' But you can darn-tooting tell them that they might be hurting their kids by restricting their diet and that they ought to be consulting a qualified physician.... and without alienating the people who really [i]are[/i] living that MFA nightmare and desperately need some kind of support.

Then make sure that you have [i]some[/i] kind of recipe substitutions offered that don't include soy= milk. Or eggs= soy.

Hmph. (Jumping lightly down from soapbox...)

On Aug 20, 2007

I like FAAN and think they do a great job in general. I think they are aimed at the *majority* needs of FA people and since DS's allergies include a non-top 8 allergy they didn't provide all the info I needed to keep him safe. I would like to see more resources for those with other FAs besides top 8 and I think they should be doing some other things they aren't yet but frankly they are already overloaded with things to do. Their job is *huge*. They have limited resources and money. Diabetes gets something like several billions a year for research. FAs get in the millions.

I would like to see FAAN push to get sesame covered by the labeling law and all other foods that they already know have the frequency necessary to qualify for the law but they have told me that is so low on their priority list because of all the other things they are working to acomplish. And when they listed those things I had to agree they were more important, however, I don't think that makes my wish unimportant. Sesame is, according to one FAAN conference speaker, now the *4th* most common food allergen in the usa and I find it very frustrating that it isn't treated as such, esp given that it is as potent as peanut.

There are other things they don't seem to be doing that I wish they were but they do a lot and I"m always going to be grateful to them.

I like many of the ideas of the above posters and agree that it would be nice to see FAAN doing those things.

On Aug 20, 2007

Also, I like that they recently stated that bans might make sense in lower grades where children still touch their faces, however this makes me concerned about older children. I have EAs and in the course of a given day during peak allergy season no matter how much I try not to do so there is a good chance at least once I"m going to touch my eyes, nose or mouth. Luckily I don't have FAs or that would still make it very dangerous for me to be around those eating certain foods. So, I wish they weren't so hardline on issues and instead said things such as, "some FA people require bans." I do think for political reasons they decided to align with the peanut industry and this might have been best, actually, because a powerful industry could run a big campagn against FA rights instead of cooperating with us. I dont' know.

There are other things. I might think of some later.

On Aug 20, 2007

[i]What do you think FAAN should be doing?[/i]

Awesome question. I guess first and foremost, [b]I think FAAN should ask us this question [/b]via some sort of membership survey (that does not require attendance at one of thier conferences). I mean, I have been a dues paying member of FAAN for over a decade (I have also paid for my school's membership for 10 years), and my thoughts, concerns and opinions have NEVER been solicited. For an organization that claims to represent me and that is my "voice", they have never bothered to ask me what is important to me.

Secondly, even if they won't endorse certain stances, I think they have a responsibility to find out if a stance is or is not shared by their membership. Afterall, just because a position is held by the CEO and/or the board of directors doesn't necessarily mean that it is the majority opinion of those of us whom they claim to represent.

Third, like other organizations, I want FAAN to establish "position statements" on certain key topics (such as the use of 504 plans, as indicated by Cathy) and make these position statements accessible to its membership via their website. I think FAAN has a very narrow view of "advocacy" by limiting it pretty exclusively to the legislative area. "Position statements" are a different form of "advocacy" that would also benefit it's members. (I can't tell you how many phone conversations I've had with their previous "Legislative" person regading this. [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img] )

------------------------------- ETA that I just wrote this in a thread running in SCHOOLS:

Quote:

Originally posted by Gail W: Well, after reviewing my FAAN newsletter this morning, it seems to me that FAAN believes it is the responsibility of the *parent* of the child with LTFAs. On page 3, there is a blue highlighted "Safe Food Tips" box that states,

[b][i]Safe Food Tips[/b] Here are are some tips to help ensure that safe foods are brought to class:

*Send in safe treats for the entire class.

*Volunteer to organize the party.

*Suggest that parents contribute to a "party fund," and you volunteer to be the designated shopper.

*Suggest that all treats brought to school be packaged foods with ingredient labels.[/i]

Does that bother anyone else? While all those are certainly possible "tips", I *wish* FAAN would present the counter-balance to their "tips" by stating (remember, this is only a wish list) such ideas as:

*Secure that only *safe* treats will be allowed to be distributed in your child's classroom via a 504 plan or IEP.

*Show them FAAN's position statment supporting food-free classroom celebrations.

* Show them the link on FAAN's webite of school's that have successfully banned certain allergens from the classroom.

*Show them FAAN's model school board policy requiring all treats brought to school must be packaged foods with ingredient labels.

I mean, wouldn't it feel great to read that?

[This message has been edited by Gail W (edited August 20, 2007).]

On Aug 20, 2007

Not specific to FAAN, but all food allergy organizations in general:

More acknowledgement of adults with FA, including those with adult onset.

More acknowledgement of the many whose reactions have never been, and hopefully never will be ANA do exist and do have real allergies. Although I realize this is at cross purposes to those of you dealing with LTFA, in my opinion the apparent fact that many adults with FA, (both ana and non-ana, but more non-ana) do not participate in FA organizations and forums like this, probably skews research, denies children with FA and their families adult role models, and makes it harder on adult-onset people who don't have access to more experienced adults with FA in their own lives. Maybe more adults with FA would step up with various kinds of support if there was more recognition of our needs, as well as what we can offer the FA community.

------------------ (relatively recent adult onset non-ANA TNA/inconclusive PA)

On Aug 20, 2007

I think they should get a clear guidline of how peds should handle possible FA children to peds and get info to ob gyns about possibly avoiding peanut, nuts and shellfish in ones 3rd trimster during pregnancy, esp if one has a family history of FAs.

I think all peds should know the basics about FAs and the symptoms of FAs, the signs of ana, how to treat ana, basics about testing and reliability and when to send a child to an allergist for testing or further info. They don't. Most peds don't which is a shame and FAAN could, IMO, easily help this by writing a simple informational sheet for peds and getting it published in a wide-read medical journal and also getting the word out to med schools.

The fact they haven't gotten ERs to be up to date is pretty surprising to me, too.

I think they should make it more clear, the way ana canada does, that labeling laws don't cover X-contam and therefore recommend, again the way ana canada does, that people call companies at least once.

I think they should have how to read a label cards for sesame and at minimum they should inform those with sesame and other non-top 8 allergens that label reading alone is *not* sufficient as sesame doesnt' have to be labeled. It can be labeled as 'spice' or 'natural flavor' or other and some foods that don't have sesame, spice or natural flavor have enough x-contam to cause a serious reaction. I don't like that I had to learn the above the hard way. They should have been telling me that when I called.

They should have a message board as well. I was itching to talk with other FA people for years before I found online sites.

On Aug 20, 2007

Quote:

Originally posted by Gail W: [b]I guess first and foremost, [b]I think FAAN should ask us this question [/b]via some sort of membership survey (that does not require attendance at one of thier conferences). [/b]

I'm pretty sure they just did exactly this in their last newsletter. They asked for input on what FAAN means to members and what we saw as the core mission of the organization. There was a web address for responses.

Personally, I think I get good value for my - what... - $20? but that's apparently just me.

On Aug 20, 2007

Quote:

Originally posted by booandbrimom: [b] Personally, I think I get good value for my - what... - $20? but that's apparently just me.[/b]

What are they doing that you find the most valuable?

On Aug 20, 2007

I think they should be working with the Allergists also. I think they should be working with food manufacturers more on labeling issues. I don't like the fact that companies can still use the words "flavors, natural flavors, flavoring, and spices. Why do we need to call and ask what these things are- why not list them on the label. I am allergic to soy bean oil and soy lecithin. It would be so great to have everything listed and let me decide if I want to dare to eat it. They need to be working harder on cures and the causes. What about the fact that so many processed food are made with soy bean protein, flour and oils. They would not be putting peanut flour, oil and protein in almost everything. Why soy- because it's cheap and they are making millions from the soy. I personally think soy in all the foods these days are a major contributor to the rise in food allergies.

------------------ Allergic to all soy, all nuts, peas, beans, sunflower. Started at age 40.

On Aug 20, 2007

Quote:

Originally posted by Momcat: [b] What are they doing that you find the most valuable?[/b]

(in my best Arnold Horshack impersonation)

OOO-OOO-OOOOOO!!!!!!!

Although I'm not a member, I've always wanted to go to one of the conferences...

[url="http://www.ehow.com/how_2068229_attend-faan-conference.html"]http://www.ehow.com/how_2068229_attend-faan-conference.html[/url]

according to the link, the membership is a wash if I attend a conference, plus I get the "benefits" of being a member....hmmmm. Might just have to cross over to the dark side. (lol)

General Disclaimer: I am not offering advice in any manner or form. I do not guarantee the accuracy, currentness, content, or applicability of the link in this post. May the Force be with you!

On Aug 20, 2007

Hey, if I'm a member of the health care professions, do I get in free?? [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img]

On Aug 20, 2007

Quote:

Originally posted by Momcat: [b] What are they doing that you find the most valuable?[/b]

For $30 a year, what I [i]expect[/i] from FAAN is a magazine subscription and web site. I figure that about covers the costs. That's what I pay for [i]Time[/i] or [i]Newsweek.[/i] However, I get a great deal more.

What do I consider most valuable? I consider FAAN directly responsible for the new labeling law, and to me, that's worth about $500/year. We probably spent an hour a week on the phone before the law with manufacturers clarifying "natural flavoring."

What I don't expect from FAAN is for them to advocate for the specific needs of my child. I expect them to evaluate the greatest opportunities for the greatest good, and to go after those. They've done an excellent job of that. I'm grateful to not have to think about epinephine on the ambulance now, or worry that my child can't carry his Epi at school and the "Be a Pal" program made a real difference to my child in grade school.

What I don't expect from FAAN is for them to issue a press release every time there's a negative portrayal of food allergies. I want them to think long and hard about where they use their limited political and media capital, and not waste it tilting at windmills.

I don't expect them to change the behavior of the entire medical community.

I don't expect them to change the behavior of the FDA (although they came pretty darn close).

I don't expect them to meet all the needs of the entire food allergic community.

As I've said in other threads: there is nothing stopping any poster in this thread from starting her own organization. It's the wild west of NPOs right now - anyone can start one. That's how FAAN got started after all. If someone thinks a Anne Coulter-like approach to food allergy advocacy will be effective, by all means give it a shot.

(Let me know the name of your new organization. I'll start demanding loudly and often that you change the world for my child - all for $30.)

On Aug 20, 2007

I subscribed for 3 years, it must not be over with yet because I still get literature from them.

I would want them to bring their teenathon (that's not what they call it and I'm too lazy to look it up) closer to home one of these years.

I saw in their website what the last one was like (pictures) and it looked very interesting.

Bring it to New York!!!

Anna [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Aug 20, 2007

Anna,

They do have a Teen group at their annual meetings. The New York one is usually in May. I'd love for my 13 year old to get involved, but he has no interest. He doesn't like to publicly acknowledge his allergies, though he does well managing them.

I've been a FAAN member for about 11-12 years. For the most part, I'm quite happy with what they've accomplished. A few things I'd like to see:

- Press the FDA to list sesame as a top allergen. Right now I personally find this harder to deal with than peanut, because of lack of labeling. I know that when I asked about it at one of the conferences the rep from the FDA said they would "consider it when they had the data to support it". I think they already do; I don't know why they're dragging their feet.

- Work harder to educate pediatricians, to increase their awareness of symptoms and proper treatment. If I remember correctly, they did have an initiative to do that some years ago. Considering how many people here still come away from their pediatricians without either an epipen or referral to an allergist, I think they need to do it again.

- Get tougher with the airlines. With everything we know now, why are so many of them still serving peanuts? Why are they unwilling to honor requests to withdraw the sacred legumes?

Amy

[This message has been edited by Going Nuts (edited August 20, 2007).]

On Aug 20, 2007

Quote:

Originally posted by Going Nuts: [b]Anna,

They do have a Teen group at their annual meetings. The New York one is usually in May.

Amy[/b]

I'm always the last to know. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] Was their first one this year. I remember calling them and asking them about the Virginia one and they didn't even mention anything of the sort. Do they have pictures for that one too. I'll take another look.

Thanks for telling me.

Anna

On Aug 20, 2007

Quote:

Originally posted by Momcat: [b]Over the years I have become frustrated with FAAN. While it's a great idea to have an organization which could advocate for those with food allergies, FAAN seems reluctant to take a stand on the real issues.

I would like to see FAAN:

Advocate the use of 504 Plans for LTFA,

Make press releases correcting misinformation that appears in the media,

Stop treating the "false sense of security" argument as valid.

Advocate for peanut/nut-free airline flights.

Cathy[/b]

Agree with all this. I hope they see this. The false sense of security argument does a huge disservice to many of us in dealing with schools. Because of this argument, school administrators are "off the hook" and continuing to allow unsafe foods at school. In fact this whole BS around "false sense of security" is why I don't subscribe to FAAN.

Lakswimmer, where is the info on banning nuts in the lower grades? I'd love to show my principal that article.

On Aug 20, 2007

I'd like to see SESAME covered as well. My DS is super allergic to sesame...it's a hard one to avoid... in lots of things.

On Aug 20, 2007

Going nuts--you and I think very much alike! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Regarding sesame, all that needs to happen for sesame to get *automatically* covered by the new USA labeling law is for the FDA to conduct a frequency study. I am planning to start a campaign to urge reps to urge the FDA to conduct this study once DS starts school next week and we got over the beginning few weeks. According to FAAN sesame qualified at least 5 years ago or more number-wise according to the data *FAAN* has collected. There has not been an offical FDA frequency study yet, though.

On Aug 20, 2007

twokidsNJ,

I remember reading it but don't know where. I think it was in the notes from the Baltimore FAAN conference or a recent FAAN newsletter. Let me see if I can find the notes...

On Aug 20, 2007

Yes, here it is, from the notes someone *else* took at the Baltimore FAAN conference. This person posted much more great info at POFAK. I don't think the person would mind me posting this one paragraph but you all will have to go to pofak to read the whole thing.

"If you can limit food in classroom in early grades (K-2) it

On Aug 20, 2007

Quote:

Originally posted by booandbrimom: [b] If someone thinks a Anne Coulter-like approach to food allergy advocacy will be effective, by all means give it a shot.

(Let me know the name of your new organization. I'll start demanding loudly and often that you change the world for my child - all for $30.)[/b]

I'm not demanding that they change the world for $30, I just want them to take a stand on issues that impact people with LTFAs. I don't think posting a position statement on their website would be too costly. I don't see how taking a stand and stating their position would be "Anne Coulter-like." Other organizations do this--the PTA, the AAP, the American Diabetes Assoc., etc.

On Aug 20, 2007

I'd like FAAN to lose that "false sense of security" bs about peanut bans at school, and be a bit more flexible and admit that bans work in some cases. Between their "false sense of security" stand and the fact that they're receiving funding from the Peanut Council, it smacks of politics to me.

I'd like FAAN to be less "East Coast" centered. It wasn't until just a couple of years ago that they've started having events West of the Mississippi.

For general food allergy advocacy issues, I really prefer Kids With Food Allergies and FAI's stance.

------------------ Cheryl, mom to Jason (9 MFA including peanuts, tree nuts, shellfish, coconut, sesame, squid) Joey (7 NKA) Allison (4 milk allergic, suspect shellfish, avoiding PN/TN for now) Ryan (1) nka *knock on wood*

On Aug 21, 2007

Quote:

Originally posted by Momcat: [b] I'm not demanding that they change the world for $30, I just want them to take a stand on issues that impact people with LTFAs. I don't think posting a position statement on their website would be too costly. I don't see how taking a stand and stating their position would be "Anne Coulter-like." Other organizations do this--the PTA, the AAP, the American Diabetes Assoc., etc.[/b]

There is a credibility cost to espousing a position on any issue. The PTA, AAP and ADA do not just jump in and do what their members want. They take (very few) positions based on research and a careful analysis of current state vs. desired state.

Think about the outcry over co-sleeping and the family bed. The AAP used up a lot of credibility on that one. Was it worth it?

Generally, from an advocacy standpoint, you start with the issues everyone can agree on and build from there. You don't jump right in and tackle the toughest issues first. You certainly don't waste your time on peripheral issues that don't advance your main causes.

FAAN already said why they didn't post a position on the CNN video - it was a no-win situation. I agree with that. I would add that it was a transitory issue. By the time they issued a statement, the video would already be gone. (The links to the video are all gone at this point.)

I would respectfully point out WE cannot agree as a community on most of the issues cited in this thread. How in the world do we expect FAAN to go out and build a consensus on those same issues with people who don't understand or care about allergies? Peanut bans are the equivalent of gay marriage to most non-allergic people.

On Aug 21, 2007

booandbremom,

You about had me until your last sentence. I don't agree that peanut bans are that out there. Peanut bans are supported by some FA groups such as I *believe* ana canada. I personally think a pro or anti ban stance is limited. Sometimes it is necessary and sometimes it is the best idea or a good idea and other times I really think it isn't needed.

I think wanting FAAN to be so anti-ban is totally reasonable and quite different from wanting them to be pro-ban. And FAAN's policy *is* shifting on this issue.

On Aug 21, 2007

Quote:

Originally posted by booandbrimom: [b] There is a credibility cost to espousing a position on any issue. The PTA, AAP and ADA do not just jump in and do what their members want. They take (very few) positions based on research and a careful analysis of current state vs. desired state. [/b]

Actually, the PTA *does* make its resolutions based on votes from members.

I think there is also a credibility cost to NOT taking a position. Does FAAN actually have written position statements on ANY issues? If you don't take a position on an issue, it's like saying you think all positions are acceptable.

Maybe FAAN sees itself more in the position of [b]mediator[/b] than [b]advocate[/b].

Cathy

On Aug 21, 2007

Quote:

Originally posted by Momcat: [b]I think there is also a credibility cost to NOT taking a position. Does FAAN actually have written position statements on ANY issues?[/b]

Have you [i]been[/i] to FAAN's site?

Here's what you say you want, and their stance:

1. Advocate the use of 504 Plans for LTFA.

What they say: "Schools should be knowledgeable about and follow applicable federal laws including ADA, IDEA, Section 504, and FERPA and any state laws or district policies that apply." There are many articles and publications on the site to familiarize parents with 504.

2. Make press releases correcting misinformation that appears in the media.

[url="http://www.foodallergy.org/whatsnew.html"]http://www.foodallergy.org/whatsnew.html[/url]

3. Stop treating the "false sense of security" argument as valid.

This is the stance of the AAAI: "Education and supervision are paramount in managing food allergies. Guidelines for children should include the following: (1) no trading or sharing of foods, food utensils, and food containers, and (2) hand washing should be encouraged before and after eating."

[url="http://www.aaaai.org/media/resources/academy_statements/position_statements/ps34.asp"]http://www.aaaai.org/media/resources/academy_statements/position_statements/ps34.asp[/url]

Don't see anything in here about a peanut ban. Can't really blame FAAN for not supporting this if the AAAI doesn't support it.

4. Advocate for peanut/nut-free airline flights.

FAAN's position: to avoid possible inhalation or skin contact reactions due to large numbers of people opening their peanut snacks, most peanut-allergic passengers are well-advised to fly on one of the following airlines that don

On Aug 21, 2007

Quote:

Originally posted by lakeswimr: [b]I don't agree that peanut bans are that out there.[/b]

Shall I find the 500 threads on this site where the members here argue for and against peanut bans?

My comparison to gay marriage was that this is a divisive issue where people have strong feelings. It's just not the place to start.

On Aug 21, 2007

[b] What they say: "Schools should be knowledgeable about and follow applicable federal laws including ADA, IDEA, Section 504, and FERPA and any state laws or district policies that apply."[/b]

Umm... of course they should follow the law. It's the law, right? What we need is for FAAN to come out and say that all students with LTFA should be automatically evaluated for Section 504 eligibility.

[b] 2. Make press releases correcting misinformation that appears in the media.

[url="http://www.foodallergy.org/whatsnew.html"]http://www.foodallergy.org/whatsnew.html[/url] [/b]

I think it's a lot more damaging when a respected news organization like MSNBC spews out dangerous misinformation about milk allergies than a when a movie depicts Nancy Drew giving someone a tracheotomy.

[b] 3. Stop treating the "false sense of security" argument as valid.

This is the stance of the AAAI: "Education and supervision are paramount in managing food allergies. Guidelines for children should include the following: (1) no trading or sharing of foods, food utensils, and food containers, and (2) hand washing should be encouraged before and after eating."

[url="http://www.aaaai.org/media/resources/academy_statements/position_statements/ps34.asp"]http://www.aaaai.org/media/resources/academy_statements/position_statements/ps34.asp[/url]

Don't see anything in here about a peanut ban. Can't really blame FAAN for not supporting this if the AAAI doesn't support it.[/b]

First of all, the organization that has taken a position here is not FAAN. Secondly, the AAAI does not say it is AGAINST bans. Thirdly, I never said FAAN should support bans, I said they should not use the "false sense of security" argument.

[b]4. Advocate for peanut/nut-free airline flights.

FAAN's position: to avoid possible inhalation or skin contact reactions due to large numbers of people opening their peanut snacks, most peanut-allergic passengers are well-advised to fly on one of the following airlines that don

On Aug 21, 2007

Quote:

Originally posted by Momcat: [b]What we need is for FAAN to come out and say that all students with LTFA should be automatically evaluated for Section 504 eligibility.[/b]

[i]Every[/i] child? Regardless of the severity of their allergy? Regardless of the cost of these evaluations? Regardless of what the parents want?

Is there any major organization for any childhood condition that has this type of a position statement? Why would it be a positive thing to mandate this for all FA kids? What prevents any parent who wants to pursue a 504 from doing so?

[b]I think it's a lot more damaging when a respected news organization like MSNBC spews out dangerous misinformation about milk allergies than a when a movie depicts Nancy Drew giving someone a tracheotomy.[/b]

Why? That video played for one day and was pulled. The movie has played for MONTHS and the children who go to school with our children (and their parents) are watching it. Which is more damaging to the audience we care about?

[b]First of all, the organization that has taken a position here is not FAAN.[/b]

No, not FAAN. It's the most respected organization in the world for allergies.

[b]Secondly, the AAAI does not say it is AGAINST bans.[/b]

It's a position paper. If they were for bans, they would say so. Instead, they give explicit instructions for dealing with an environment that contains food allergens.

[b]Thirdly, I never said FAAN should support bans, I said they should not use the "false sense of security" argument.[/b]

Did I miss something? What does "false sense of security" matter unless you're advocating for a peanut ban? I thought the whole point was that FAAN (supposedly) doesn't support peanut bans because "they can lead to a false sense of security?"

[b]That is not a position, it's a survival tip.[/b]

One of the strongest ways to change a company's behavior is to publish a list of companies who comply and companies who don't. That's not only a survival tip - it's good advocacy.

[b]A position would be to state that research shows that peanut dust is present in aircraft where peanuts are served and that it is enough to cause a dangerous reaction in a situation where medical help is not immediately available.[/b]

Do you believe this is true? The leading researchers in the field do not believe this is true in the vast majority of cases. Take up the issue with them.

[b]That FAAN urges all airlines to stop serving peanuts[/b]

Do you know they aren't saying this where it matters: TO THE AIRLINES? Having a p***ing match in the media is not the way to pursuade people to do things. I'm sure these conversations are being had.

[b]and that it is discriminatory to bar people with severe peanut allergies from flying on certain airlines.[/b]

I did not know airlines were barring peanut-allergic individuals from flying. Is this really true?

[b]Well, there you have it.[/b]

Well no, I don't.

[This message has been edited by booandbrimom (edited August 22, 2007).]

On Aug 21, 2007

[b][i]Every[/i] child? Regardless of the severity of their allergy? [/b] I said [b]LT[/b]FA.

[b]What prevents any parent who wants to pursue a 504 from doing so?[/b] Not knowing that such a thing exists. How many times have new people come to this website and never heard of a 504 Plan? My DD's school certainly never advertised them...

[b]No, not FAAN. It's the most respected organization in the world for allergies.[/b] ???

[b]It's a position paper. If they were for bans, they would say so. [/b]

It's a position paper. If they were against bans, they would say so.

[b]Did I miss something? What does "false sense of security" matter unless you're advocating for a peanut ban?[/b]

It matters because schools latch onto this argument and use it to argue against all kinds of accommodations.

[b]One of the strongest ways to change a company's behavior is to publish a list of companies who comply and companies who don't. That's not only a survival tip - it's good advocacy.[/b]

That only works if your group is numerous enough to have an economic impact on the companies they boycott.

[b]Do you believe this is true? The leading researchers in the field do not believe this is true in the vast majority of cases. Take up the issue with them.[/b]

If peanuts on airlines are not a problem then why does FAAN advise avoiding airlines that serve peanuts?

[b]Do you know they aren't saying this where it matters: TO THE AIRLINES? Having a p***ing match in the media is not the way to pursuade people to do things. I'm sure these conversations are being had.[/b]

Do you know they are saying this to the airlines?

[b]I did not know airlines were barring peanut-allergic individuals from flying. Is this really true?[/b]

By serving peanuts, they are effectively barring those with severe allergies.

On Aug 21, 2007

[i][/i]

Quote:

I did not know airlines were barring peanut-allergic individuals from flying. Is this really true?

Yes. It [i]is[/i] true. An airline can deny you boarding for ANY reason. And they can deem you 'unfit to fly' because of a pre-existing medical condition. AT THE GATE, even. Just so long as they refund you the price you paid for your ticket.

Continental comes to mind immediately, but I recall that this has also happened to somone [i]in the midst of a trip[/i] in Central America.

Add to that the FACT that no flight crew is obligated to modify a flight plan for ANY medical emergency (thought I undertstand that largesse being what it is, most [i]will[/i] as long as it is obvious this is a life-threatening emergency), and well....

you really DO 'fly at your own risk.'

On Aug 22, 2007

Quote:

Originally posted by booandbrimom: [b]Is there any major organization for any childhood condition that has this type of a position statement? [/b]

[url="http://diabetes.org/advocacy-and-legalresources/discrimination/school/504plan.jsp"]http://diabetes.org/advocacy-and-legalresources/discrimination/school/504plan.jsp[/url]

On Aug 22, 2007

and this: [url="http://diabetes.org/advocacy-and-legalresources/discrimination/school.jsp"]http://diabetes.org/advocacy-and-legalresources/discrimination/school.jsp[/url]

better yet: [url="http://diabetes.org/advocacy-and-legalresources/discrimination/school/scrights.jsp"]http://diabetes.org/advocacy-and-legalresources/discrimination/school/scrights.jsp[/url]

[This message has been edited by Gail W (edited August 22, 2007).]

On Aug 22, 2007

Quote:

Originally posted by Momcat: [b]It matters because schools latch onto this argument and use it to argue against all kinds of accommodations.[/b]

This was my experience. There was a time when FAAN (then "FAN") vocally oppossed bans. There was an article written by Ann M-F on FAN's website called "Why Bans Don't Work". My school district used that article to deny my child of accommodations.

Here is a little about it: [url="http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000914.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum7/HTML/000914.html[/url]

On Aug 22, 2007

Quote:

Originally posted by Gail W: [b] [url="http://diabetes.org/advocacy-and-legalresources/discrimination/school/504plan.jsp"]http://diabetes.org/advocacy-and-legalresources/discrimination/school/504plan.jsp[/url]

[/b]

Thanks, Gail, but that's not what Momcat was asking for. FAAN has the same type of information on their site. What she wants is [b]"for FAAN to come out and say that all students with LTFA should be automatically evaluated for Section 504 eligibility."[/b]

Does the ADA statement say that?

I do not want to be forced to have my child evaluated if I don't think that's in the best interest of my child or my school. I'm not sure why anyone would think mandating this is a good idea.

On Aug 22, 2007

I am for peanut bans AND gay marriage.

just saying.

On Aug 22, 2007

Section 504 of the Rehabilitation Act of 1973 obligates schools to identify children covered under the law and notify students and parents of the school's obligation under the law.

Here's an overview of how section 504 works as far as schools go. [url="http://www.uiowa.edu/infotech/Section504.htm"]http://www.uiowa.edu/infotech/Section504.htm[/url]

------------------ Cheryl, mom to Jason (9 MFA including peanuts, tree nuts, shellfish, coconut, sesame, squid) Joey (8 NKA) Allison (4 milk allergic, suspect shellfish, avoiding PN/TN for now) Ryan (1) nka *knock on wood*

On Aug 22, 2007

Momcat:

I'm tired of cut and paste so I'm going to try to summarize the issues here.

I asked whether you thought every child should have to be evaluated for a 504, regardless of what the school or parent thought. That's what you said you wanted and what FAAN didn't do. If you really believe this, then I disagree with you wholeheartedly. I do not want to be forced to have my child evaluated, regardless of how severe his allergies are.

You then went on to say that the reason this should be mandated is that parents don't know the option exists. Are you saying by this that you don't think FAAN does enough to get the word out? That there aren't enough educational things on their site if a parent wants a 504? That they won't help with one? I don't understand why you're faulting FAAN for this.

If we're going to start mandating behavior simply because of ignorance, then let's start weighing children in schools and determining what they can eat for lunch. Let's look at their vaccinations and forcibly give them if they're not up to date. Etc. etc.

Regarding the false sense of security thing, you said "It matters because schools latch onto this argument and use it to argue against all kinds of accommodations." Are you talking about a peanut ban or not? If you're not talking about a peanut ban, please tell me what the heck you're referring to.

If the issue is peanut bans, then I stand by what I said earlier. This is the most divisive issue with regard to allergies. It's the hardest to tackle. I can understand why it would upset you that FAAN opposes peanut bans. If that's your stance, then say so and don't send them your $30. (Personally, I think it's a little like not contributing to a candidate because of their stance on a single issue, but hey - it's your money.)

Regarding FAANs reach and advocacy ("That only works if your group is numerous enough to have an economic impact on the companies they boycott."): what's your point? Are you saying that 30,000 members of FAAN isn't enough to make a difference? What the alternative? This seems like an argument for all of us to contribute to FAAN so that at least some of our issues are addressed by the (largest) group that has an opportunity to make a difference.

You said: "If peanuts on airlines are not a problem then why does FAAN advise avoiding airlines that serve peanuts?"

What I actually said was: "The leading researchers in the field do not believe this is true in the vast majority of cases." I did not say all cases. I think it's great that FAAN advocates for an issue that only affects a small percentage of the FA population. Again, why are you faulting them for this? I would think this would make you happy!

Regarding what they are saying to the airlines: it doesn't matter to me. You are the one complaining about FAAN. If it matters to you, take the initiative and call them. Ask them what they are doing with the airlines. Get your $30 worth.

Knowing what I do about advocacy and PR, I'd be surprised if they aren't pursuing this. I simply said that it doesn't make sense for them to pursue it in a public venue.

Regarding your statement "By serving peanuts, they are effectively barring those with severe allergies" and your previous statement " That FAAN urges all airlines to stop serving peanuts and that it is discriminatory to bar people with severe peanut allergies from flying on certain airlines."

If people are commonly being barred from flight because of peanut allergy, then yes, perhaps FAAN needs to make a statement. This is the first time I've ever heard of that. (I can't imagine how an airline would even know a passenger was peanut-allergic in the first place...)

The other part of what you seem to be asking FAAN to do is to tell airlines they can't have peanuts at all. From a practical perspective, how exactly can they do that except by making known the airlines that do and don't serve peanuts? Should they advocate for a law banning peanuts altogether?

From a moral perspective, do you believe that [i]all[/i] disability should be accommodated by [i]any[/i]business? Let's say my child can have a severe asthmatic reaction from perfume (which he can). Should airlines require their stewardesses not to wear perfume? Where is the line? If you ran an advocacy group and were looking for battles that could actually be won, would you tackle this one?

On Aug 22, 2007

[b]I asked whether you thought every child should have to be evaluated for a 504, regardless of what the school or parent thought. That's what you said you wanted and what FAAN didn't do. If you really believe this, then I disagree with you wholeheartedly. I do not want to be forced to have my child evaluated, regardless of how severe his allergies are.[/b]

Yes, I think any child who comes to school with a [i]life-threatening[/i] food allergy should be evaluated for Section 504 eligibility. We can't have it both ways--if LTFAs are a disability then the school is legally bound to evaluate. If LTFAs are not a disability, then our kids don't qualify for Section 504 Plans.

[b]You then went on to say that the reason this should be mandated is that parents don't know the option exists. Are you saying by this that you don't think FAAN does enough to get the word out? That there aren't enough educational things on their site if a parent wants a 504? That they won't help with one? [/b]

Yes. That's exactly what I'm saying. FAAN does refer to Section 504 in a few places. But I am not seeing anything in the Schools section about what a 504 Plan is or how to go about getting one.

[b]If we're going to start mandating behavior simply because of ignorance, then let's start weighing children in schools and determining what they can eat for lunch. Let's look at their vaccinations and forcibly give them if they're not up to date. Etc. etc.[/b]

Schools do require up-to-date vaccinations. I'm not sure what you're getting at here.

[b]Regarding the false sense of security thing, you said "It matters because schools latch onto this argument and use it to argue against all kinds of accommodations." Are you talking about a peanut ban or not? If you're not talking about a peanut ban, please tell me what the heck you're referring to.[/b] Maybe you should ask Gail W

Quote:

There was an article written by Ann M-F on FAN's website called "Why Bans Don't Work". My school district used that article to deny my child of accommodations.

[b]Regarding FAANs reach and advocacy ("That only works if your group is numerous enough to have an economic impact on the companies they boycott."): what's your point? Are you saying that 30,000 members of FAAN isn't enough to make a difference? What the alternative? [/b]

Each of us boycotting here and there is not going to make a difference. FAAN can make a difference by giving a public voice to our issues.

[b]You said: "If peanuts on airlines are not a problem then why does FAAN advise avoiding airlines that serve peanuts?"

What I actually said was: "The leading researchers in the field do not believe this is true in the vast majority of cases." I did not say all cases. I think it's great that FAAN advocates for an issue that only affects a small percentage of the FA population. Again, why are you faulting them for this? I would think this would make you happy![/b] I don't see FAAN's list of peanut-free airlines as "advocacy".

[b]Regarding what they are saying to the airlines: it doesn't matter to me.[/b]

Apparently not!

[b]Knowing what I do about advocacy and PR, I'd be surprised if they aren't pursuing this. I simply said that it doesn't make sense for them to pursue it in a public venue.[/b]

If it's not in a public venue, how can FAAN claim to be the voice of those with food allergies? How can they be our voice if we don't know what they are saying?

[b]Regarding your statement "By serving peanuts, they are effectively barring those with severe allergies" and your previous statement " That FAAN urges all airlines to stop serving peanuts and that it is discriminatory to bar people with severe peanut allergies from flying on certain airlines."

If people are commonly being barred from flight because of peanut allergy, then yes, perhaps FAAN needs to make a statement. This is the first time I've ever heard of that. (I can't imagine how an airline would even know a passenger was peanut-allergic in the first place...)[/b]

I don't think it is commonplace, I have only read about a couple of incidents. Airlines know that DD is PA because we request a "peanut-free zone" (offered by Alaska Airlines.)

[b]The other part of what you seem to be asking FAAN to do is to tell airlines they can't have peanuts at all. From a practical perspective, how exactly can they do that except by making known the airlines that do and don't serve peanuts? Should they advocate for a law banning peanuts altogether? [/b]

Yes, I think they should advocate for a law that airlines should not serve peanuts.

[b]From a moral perspective, do you believe that [i]all[/i] disability should be accommodated by [i]any[/i]business?[/b]

Yes, with the constraints of the ADA. I.e. that it should not be an "undue burden" and it should not require a fundamental alteration of the service that is being provided. I think that not serving peanuts on aircraft easily fits within this definition.

[b] Let's say my child can have a severe asthmatic reaction from perfume (which he can). Should airlines require their stewardesses not to wear perfume? [/b]

Yes. Some airlines probably already require this.

[b]Where is the line? If you ran an advocacy group and were looking for battles that could actually be won, would you tackle this one?[/b]

In my own way, I am tackling it now. I don't have the means to run an advocacy group, but I can make sure these issues are discussed in forums like this one.

Cathy

On Aug 22, 2007

OK, so let's see if I can summarize your positions on all of this:

1. You think FAAN should mandate that any child who comes to school with a [i]life-threatening[/i] food allergy should be evaluated for Section 504 eligibility, regardless of what parents or schools want.

2. You believe that FAAN does not post any information on their site about what a 504 Plan is or how to go about getting one.

3. You apparently support peanut bans and think FAAN should too.

4. You want all FAAN's advocacy to be done in a public venue (or at least airline advocacy), even if it's not effective because otherwise "how can FAAN claim to be the voice of those with food allergies if we don't know what they are saying?"

5. You believe FAAN should advocate for a law that prevents airlines from serving peanuts, similar to restrictions on smoking.

6. You believe that all disabilities regardless of severity or scope should be accommodated by all businesses as long as it's not an "undue burden" and does not require a fundamental alteration of the service that is being provided.

Does that cover it?

On Aug 22, 2007

Quote:

Originally posted by booandbrimom: [b]OK, so let's see if I can summarize your positions on all of this:

1. You think FAAN should mandate that any child who comes to school with a [i]life-threatening[/i] food allergy should be evaluated for Section 504 eligibility, regardless of what parents or schools want.

[/b]

It isn't FAAN's duty--it is the school district's duty to EVALUATE, make it known to parents: It is called-Child Find

"The District cannot wait until eligible children present themselves, requesting services. The District has an affirmative duty to conduct a

On Aug 22, 2007

Quote:

Originally posted by PinkPoodle: [b] It isn't FAAN's duty--it is the school district's duty to EVALUATE, make it known to parents: It is called-Child Find

"The District cannot wait until eligible children present themselves, requesting services. The District has an affirmative duty to conduct a

On Aug 22, 2007

Quote:

Originally posted by The #l Mouser!: [b] oh, thank you thank you thank you....how many times have I tried to explain this. If only more school nurses recognized their role in this obligation...

Personally? I think it's unsafe practice not to.[/b]

I'm not even a school nurse [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] and I see how risky it would be to have that information (child has allergy to XXX) and stop there because the parents didn't initiate the need for epi or reaction history of anaphylaxis. Can you imagine if something happens to one of these kids and the nurse/principal would have to defend that why they didn't pursue further information. We are all just 'dumb' parents...it is the school who holds the responisibility to INFORM us of our rights. It hasn't happened that way for me...thankfully, I'm not so 'dumb', but think of all the children whose rights are not being protected---not to mention whose lives might not even be protected at school. So, it would be great if FAAN had a blurb regarding 504s/LTFAs and schools' responsibility in finding the little cherubs.

On Aug 22, 2007

Quote:

Originally posted by PinkPoodle: [b]So, it would be great if FAAN had a blurb regarding 504s/LTFAs and schools' responsibility in finding the little cherubs. [/b]

I agree. A blurb similar to the one posted on the American Diabetes Assoc link. . with examples of 504 plans.

On Aug 22, 2007

[url="http://www.diabetes.org/advocacy-and-legalresources/discrimination/cde-settlement.jsp?WTLPromo=HOME_cdesettlement&vms=240312617171&vms=241127903452"]http://www.diabetes.org/adv ocacy-and-le...ms=241127903452[/url]

I'm quite certain FAAN would NEVER become this involved--or involved at all. The effects were great. Kudos to the ADA. This is something I think FAAN should be doing. Definitely. Anyone who doesn't think it is necessary--take some time and go read on the Schools Board.

Edited to add I don't care if the ADA has more $$$ to do this; I'd gladly contribute thousands to make certain a basic standard for the rights of children with LTFA. $5000 retainer for a private attorney to battle alone...or band together with resources and will...I think most would choose to band together.

[This message has been edited by PinkPoodle (edited August 22, 2007).]

On Aug 22, 2007

Quote:

Originally posted by booandbrimom: OK, so let's see if I can summarize your positions on all of this:

[b]1. You think FAAN should mandate that any child who comes to school with a [i]life-threatening[/i] food allergy should be evaluated for Section 504 eligibility, regardless of what parents or schools want. [/b]

I don't think they can "mandate" anything, but they can advocate for that.

[b]2. You believe that FAAN does not post any information on their site about what a 504 Plan is or how to go about getting one.[/b]

If it's there, show me where. I couldn't find it.

[b]3. You apparently support peanut bans and think FAAN should too.[/b]

I think that there are circumstances under which bans are warranted.

[b]4. You want all FAAN's advocacy to be done in a public venue (or at least airline advocacy), even if it's not effective because otherwise "how can FAAN claim to be the voice of those with food allergies if we don't know what they are saying?"[/b]

Yes.

[b]5. You believe FAAN should advocate for a law that prevents airlines from serving peanuts, similar to restrictions on smoking.[/b]

Yes.

[b]6. You believe that all disabilities regardless of severity or scope should be accommodated by all businesses as long as it's not an "undue burden" and does not require a fundamental alteration of the service that is being provided. [/b]

I didn't say "regardless of severity." A mental or physical impairment that rises to the level of disability under the meaning of the ADA and Section 504 should be accommodated by all businesses. This is the law, after all!

Cathy

On Aug 22, 2007

Quote:

Originally posted by Sarahb: [b]I am for peanut bans AND gay marriage.

just saying. [/b]

[img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

You are not alone.

Just saying.

On Aug 22, 2007

Quote:

Originally posted by Momcat: [b]I don't have the means to run an advocacy group, but I can make sure these issues are discussed in forums like this one.[/b]

If these are the issues you would focus on as a FA advocate, here's why I wouldn't give you my $30: [b]1. You think that any child who comes to school with a [i]life-threatening[/i] food allergy should be evaluated for Section 504 eligibility, regardless of what parents or schools want.[/b]

And then what?

This position doesn't mean anything. You can trot out legal papers all you want, but in the end the safety of a child is determined by a partnership between the parent(s) and the school.

Not every child with a life-threatening allergy requires specific accommodations. Not every school believes a 504 is the best or only way to accommodate food allergies.

Advocating for the most restrictive, one-size-fits-all approach is a waste of time and (my) money.

[b]2. You think there are circumstances under which bans are warranted.[/b]

Surprise. I think you're right. [i]But I would not pay you to advocate for this position[/i]. The high negatives of taking such a polarized stand are not worth the very small benefit a parent might receive from your advocacy.

If a school isn't willing to put a peanut ban in place despite the evidence of a need for the ban, a FA group's advocacy isn't going to change their mind.

[b]3. You think your advocacy should always be done in a public venue.[/b]

I think you need some better instruction in advocacy. Most of the true changing of minds and hearts is done behind the scenes.

[b]4. You want to advocate for a law that prevents airlines from serving peanuts, similar to restrictions on smoking.[/b]

I would think you were misguided if this was on your top 5 list of advocacy issues. There are precautions that can be taken for individuals where this is truly an issue.

There are NO options when it comes to mislabeled food, missing epinephrine on EMVs and limited access to self-administered epinephrine in school settings. I want my $30 going toward the bigger issues.

[b]5. You believe that all disabilities regardless of severity or scope should be accommodated by all businesses as long as it's not an "undue burden" and does not require a fundamental alteration of the service that is being provided. [/b]

So if I understand this one correctly, you're now going to use my $30 (and presumably the $30 of about 100,000 other PA people) to sponsor a class action lawsuit against the airline industry because they are discriminating against peanut-allergic passengers.

Come on. You really think you're going to win that one? In the face of the scientific studies to the contrary? Do you have anyone who can stand up in court and say "I was damaged by a peanut on an airplane"?

My $30...down the drain again.

[b]If it's there, show me where. I couldn't find it.[/b]

[url="http://www.foodallergy.org/school/reference.html"]http://www.foodallergy.org/school/reference.html[/url]

On Aug 22, 2007

Quote:

Originally posted by booandbrimom: [b] For $30 a year, what I [i]expect[/i] from FAAN is a magazine subscription and web site. I figure that about covers the costs. That's what I pay for [i]Time[/i] or [i]Newsweek.[/i] However, I get a great deal more.

[omitted stuff]

(Let me know the name of your new organization. I'll start demanding loudly and often that you change the world for my child - all for $30.)[/b]

Heck no--$30 only covers the magazine and keeping the water cooler a viable place for gossip. It's the development professionals at FAAN who raise money for advocacy. And it's not hard to make a case for funding when you've got a situation like ours.

Hey--perhaps that should be my next NPO development field--FAAN. Hmmmmmmm . . . .

On Aug 22, 2007

Booandbrimom:

I think there may be more people than you think who have suffered anaphylaxis on airplanes.

I guess we just disagree on priorities. That's your right. And mine, too.

The 504 Q&A link on the page you sent me to is dead.

Cathy

[This message has been edited by Momcat (edited August 22, 2007).]

On Aug 22, 2007

To echo airlines denying PA passangers boarding--Continental told us we should not fly them when they failed to make the flight safe (to our standards) for DS. All we asked was for them to 1) at least tell us whether they were going to be serving pretzels or peanuts (they wouldn't) 2) at best serve pretzels instead of peanuts. They wouldn't. They at least gave us our money back.

Continental actually kicked off a mother and her PA daughter during a layover in Houston. They were traveling from California to somewhere that wasn't Houston. That mom is a member of the boards--a physician who lives in California.

There is no reasoning with Continental on this. They do not consider what they're doing to be in violation of any law.

It's ludicrous and stone-cold.

Yes, we need an advocate for us with regard to this heartless airline! And FAAN has the power. This would be a bit issue of mine. They could use their power for more good by advocating for us. If they won't, then we do in fact need to start up a nonprofit. And they are NOT so easy to set up, btw--and certainly more difficult to maintain. I know.

On Aug 22, 2007

The onus of notifying parents that their child is eligible for a section 504 plan is on the school, not FAAN.

I'm aware that section 504 plans exist, but I've declined one. The allergy action plan, IHP, and other arrangements we have are adequate.

Now, if the school was less cooperative, I would have pushed for the 504.

------------------ Cheryl, mom to Jason (9 MFA including peanuts, tree nuts, shellfish, coconut, sesame, squid) Joey (8 NKA) Allison (4 milk allergic, suspect shellfish, avoiding PN/TN for now) Ryan (1) nka *knock on wood*

On Aug 22, 2007

[i]I think there may be more people than you think who have suffered anaphylaxis on airplanes.[/i]

I think so, too.

My next-door neighbor has personally BEEN on a flight that made an emergency landing because of pn anaphylaxis. Within the last eight years. I know because when this neighbor learned of our DD's allergy (shortly after moving into the neighborhood) this story was volunteered as evidence of understanding the severity of DD's allergy. Neighbor is not an especially frequent flier, BTW.

FIL has seen this not once but [i]twice.[/i] (Once to an 'unidentified allergen', once to pn.)

These are not friend-of-a-friend reports. I know the people who were on the airplanes when it happened.... neighbor admits that major emotion at the time was annoyance over missing a connection.

Anecdotally, the odds are incredibly slim that I personally know two people who have witnessed such a large number of these supposedly extraordinarily rare cases. I just don't know many people, and those I do are not frequent fliers by any means.

On Aug 22, 2007

I recently read about a plane in the UK landing due to a PA adult - the passengers where bused to thier destination and more than 30 late...b/c it was right at the time of the the terrorist docs who lit themselves on fire and drove into the terminal. I'll see if I can find it.

Momcat...I'm with you. Where do I send my $30. Or should I send $5K to Nicole? I'm in either way.

I do not understand why bans are so divissive? I just don't get it.

On Aug 22, 2007

[url="http://www.uk-airport-news.info/manchester-airport-news-060707.htm"]http://www.uk-airport-news.info/manchester-airport-news-060707.htm[/url]

Nut causes emergency landing at Manchester Airport 06.07.07

An Inverness-bound plane full of holidaymakers was forced to make an emergency landing at Manchester Airport after a passenger collapsed following a severe reaction to a nut allergy. The drama meant the flight's passengers arrived at the Highland capital 30 hours later than scheduled - and by bus!

On Aug 22, 2007

Quote:

Originally posted by solarflare: [b]The onus of notifying parents that their child is eligible for a section 504 plan is on the school, not FAAN. [/b]

Yes, legally the school is responsible for notifying the parents. How often does that really happen? Wouldn't it start happening more often if FAAN made information available to people about Section 504 and how it applies to food allergies and how the process works to request an evaluation?

Requesting a 504 [i]shouldn't[/i] be a confrontational process. Where did this idea come from? Schools should be [i]offering[/i] 504 evals to us. If 504's for LTFA become routine, it will no longer be considered "confrontational" to request one.

By being "nonconfrontational" about this issue, FAAN is actually making it harder for parents who do request a 504. Why make it harder for us to secure our children's rights to safe access to a free appropriate education?

Cathy

On Aug 22, 2007

No, SarahB--As much as I would love a gift of $5000, I meant (but didn't type too clearly) that I would love to see a national food allergy organization stand up and say "The discrimination that is happening in these schools is unacceptable. We're filing a class action suit on the behalf of Child A, B, C, D, etc."---like the ADA did. An educational attorney will cost (rough estimate--it varies) about $5000 for each of us parents. Imagine all of that money with the backing of a national food allergy organization...it could make a difference. Start with one state...watch them all start to get their ducks in a row.

I like the $5000 scenario to me, too [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Booandbrimom-What scientific studies are you referring to when you say they have disproved peanut dust on aircraft to be reactive to most peanut allergic individuals? I am interested in the studies. I haven't seen them.

Thanks!

[This message has been edited by PinkPoodle (edited August 23, 2007).]

On Aug 22, 2007

I knew what you meant PinkPoodle.... [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I'm in.

On Aug 22, 2007

Quote:

What scientific studies are you referring to when you say they have disproved peanut dust on aircraft to be reactive to most peanut allergic individuals? I am interested in the studies. I haven't seen them.

I found this:

Quote:

SELF-REPORTED ALLERGIC REACTIONS TO PEANUTS ON COMMERCIAL AIRLINERS

Sicherer SH, Furlong T J, DeSimone J, Sampson HA.

JACI 1999; 104: 186-189

It is known that individuals allergic to peanuts are at risk for unintended exposure to peanuts in prepared foods, such as those cooked in peanut oil or prepared with utensils or machinery that contain residue of peanut products. It has been debated, however, to what extent those with peanut sensitivities might suffer from exposure to peanuts that are in their near vicinity, specifically in a commercial airliner. Searching for some definitive evidence to this debate, Sicherer et al studied reports of 42 participants in the National Peanut and Tree Nut Allergy Registry who had experienced an allergic reaction on an airplane. Most of the respondents were young children whose parents provided the information about the event. Results showed that reactions resulting from inhalation of peanut dust usually occurred when more that 25 passengers on the plane were being served peanuts. In general, the reactions were not life-threatening, but about three-fourths did receive medications and [b]6 of those received epinephrine.[/b] The authors drew the conclusion that peanut-sensitive individuals should take care when traveling on commercial airliners and prepare in advance to have emergency medication at their disposal.

And here's a "helpful" paper from FAAN which refers to the Mayo Clinic study about peanut protein in aircraft air filters.

[url="http://www.allergysafecommunities.ca/assets/common_beliefs_faan_2003.pdf"]http://www.allergysafecommunities.ca/assets/common_beliefs_faan_2003.pdf[/url]

Cathy

On Aug 23, 2007

Quote:

Originally posted by booandbrimom: [b]Not every school believes a 504 is the best or only way to accommodate food allergies.

Advocating for the most restrictive, one-size-fits-all approach is a waste of time and (my) money.[/b]

This is ridiculous and tells me that you [i]still[/i]do not understand Section 504.

On Aug 23, 2007

Quote:

Originally posted by Gail W: [b] This is ridiculous and tells me that you [i]still[/i]do not understand Section 504. [/b]

DITTO I thought I gave pretty clear info in regards to 504, but yep, the understanding is still not there. The schools is [i]obligated[/i] to evaluate children with a disability.

On Aug 23, 2007

Quote:

[b]Originally posted by PinkPoodle:

DITTO I thought I gave pretty clear info in regards to 504, but yep, the understanding is still not there. The schools is [i]obligated[/i] to evaluate children with a disability.[/b]

I think I know where the disconnect is here.

Schools are [i]NOT[/i] 'obligated to evaluate children with a disability.'

[i][b]They ARE obligated to OFFER an evaluation to 'any child who is SUSPECTED of having a qualifying disability.'[/i][/b]

An evaluation that a parent, incidentally, can simply say "no, thanks" to.

Separate rant entirely, yes... but if all parent advocacy groups did as much to 're-educate' as ADA has on this matter, 'Child Find' (the point clarified above) would work a whole lot differently than it currently DOES. (Which is to say that... it [i]doesn't.[/i] Not even for kids with very obvious physical disabilities.)

one last try on the brackets... DOH!}

[This message has been edited by Corvallis Mom (edited August 23, 2007).]

On Aug 23, 2007

Quote:

Originally posted by booandbrimom: [b]Not every child with a life-threatening allergy requires specific accommodations.[/b]

Yes they do. It starts with having a full time school nurse. RN and appropriately prepared. Maybe more, depending on the number of students.

Quote:

[b]Not every school believes a 504 is the best or only way to accommodate food allergies.[/b]

doesn't mean they are right or engaging in a safe practice, either. Personally, I think an IEP/OHI impairment is the ticket, in particular for [i]life threatening[/i] food allergies, but that's just me. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Interesting case:

[url="http://www.sro.nysed.gov/2005/05-127.htm"]http://www.sro.nysed.gov/2005/05-127.htm[/url]

Quote:

[b]Advocating for the most restrictive, one-size-fits-all approach is a waste of time and (my) money.[/b]

That's probably part of the reason [i]Child Find[/i] now under IDEA 2004, exists.

And hey, is the [i]obligation to evaluate[/i], to seek out these students an obligation under IDEAIEP, ADA/504, or both.

I know the whole "child find" obligation played into my favoring IDEA to address LTFA, but could someone please direct me to where a similiar obligation exists for a 504?

edit to add disclaimer: I am not offering advice, I do not guarantee the accuracy, currentness, content, or applicability of the link in this post. IMMV.

[This message has been edited by The #l Mouser! (edited August 23, 2007).]

On Aug 23, 2007

Quote:

Originally posted by PinkPoodle: [b]

DITTO I thought I gave pretty clear info in regards to 504, but yep, the understanding is still not there. The schools is [i]obligated[/i] to evaluate children with a disability.[/b]

Under IDEA or ADA or both?

edit to fix quote.

[This message has been edited by The #l Mouser! (edited August 23, 2007).]

On Aug 23, 2007

Quote:

Originally posted by PinkPoodle: [b] DITTO I thought I gave pretty clear info in regards to 504, but yep, the understanding is still not there. The schools is [i]obligated[/i] to evaluate children with a disability.[/b]

Quote:

Originally posted by Gail W: [b] This is ridiculous and tells me that you [i]still[/i]do not understand Section 504. [/b]

I think of it like Miranda Rights???

On Aug 23, 2007

Since I happen to have this link handy all the time....

(see recent posts in schools.... [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img])

[url="http://www.ed.gov/about/offices/list/ocr/504faq.html"]http://www.ed.gov/about/offices/list/ocr/504faq.html[/url]

Take a look at FAQ #20:

Quote:

20. What process should a school district use to identify students eligible for services under Section 504? Is it the same process as that employed in identifying students eligible for services under the IDEA?

School districts may use the same process initially to evaluate the needs of students under Section 504 as they use to evaluate the needs of students under the IDEA. If school districts choose to adopt a separate process for evaluating the needs of students under Section 504, they must follow the requirements for evaluation specified in the Section 504 regulation at 34 C.F.R. 104.35.

And I think that items 25 and 27 are also relevent to this particular discussion:

Quote:

25. Does a medical diagnosis of an illness automatically qualify a student for services under Section 504?

No. A medical diagnosis of an illness does not automatically qualify a student for services under Section 504. The illness must cause a substantial limitation on the student's ability to learn or other major life activities. For example, a student who has a physical or mental impairment would not be considered a student in need of services under Section 504 if the impairment does not in any way limit the student's ability to learn or other major life activity, or only results in some minor limitation in that regard.

(snipped) 27. What should a recipient school district do if a parent refuses to consent to a case study evaluation under the Individuals with Disabilities Education Act (IDEA), but demands a Section 504 plan for a student without further evaluation?

Section 504 requires informed parental permission for initial evaluations. If a parent refuses consent for an initial evaluation and a recipient school district suspects a student has a disability, the IDEA and Section 504 provide that school districts may use due process hearing procedures to override the parents' denial of consent.

Hope this is helpful.

[This message has been edited by Corvallis Mom (edited August 23, 2007).]

On Aug 23, 2007

I dont know what I want from FAAN. I mean - We have a good repoire with our school, we have our plan. We have our foods. We know what to avoid.

Labelling, perhaps? FALCPA was good, but not enough?

Kids with MFAs - I mean what IS the game plan? Just avoid the foods. Wait to outgrow...

Jason

------------------ [b]* Beyond Obsessed * [/b]

On Aug 23, 2007

Quote:

Originally posted by Corvallis Mom: [b] Hope this is helpful.

[/b]

It is. It tells me that in all actuality, a child will probably then end up being evaluated simultaneously for both. If they are using the IDEA process. Now, if I remember right, isn't a school district permitted to *insist* that if a plan *is* going to be used, and a child qualifies for either an IEP or a 504, they can insist on it being the IEP, if it's going to be anything? That if a parent refuses the IEP, they necessarily refuse the 504 as well?

On Aug 26, 2007

I would like FAAN to review and up date their written offerings on their website, so as to give the most up-to-date info possible.

For example, the "Managing Food ALlergies in School" section has page entitled "Avoiding an Allergic Reaction" which is actually [i]reprinted from Food Allergy News Special Issue for Elementary School Principals, [b]Fall 2000.[/b] [/i] (My bold added for emphasis.)

Without going into details right now (I'm slammed) I feel that article needs some serious updating in many sections, and does the food allergy community a disservice.

JMPHO, of course.

------------------ ~Eli[b]Z[/b]abeth, Mother to 2: DD age 5, NKA, treated as though PA/TNA DS age 8, PA, possible TNA, Latex, legumes? (PA diagnosed & ana reaction 1999) Member here since 2000

On Aug 26, 2007

Quote:

Originally posted by Corvallis Mom: [b][i]I think there may be more people than you think who have suffered anaphylaxis on airplanes.[/i]

I think so, too.

[/b]

Add me to I think so too!

A friend of mine's DH suffered anaphylaxis from airplane food on a CA=NY flight. He was traveling with 2 drs, who saved him with 2 epipen injections. They landed in NY as scheduled but he was rushed to hospital and spent overnight there.

The incident was not reported because this guy is prominent in his field and did not want attention...and he had to go to work right when he got out of the hospital. But looked terrible for a week!

On Aug 26, 2007

Quote:

Originally posted by Corvallis Mom: [b][i][/i]

Yes. It [i]is[/i] true. An airline can deny you boarding for ANY reason. And they can deem you 'unfit to fly' because of a pre-existing medical condition. AT THE GATE, even. Just so long as they refund you the price you paid for your ticket.

Continental comes to mind immediately, but I recall that this has also happened to somone [i]in the midst of a trip[/i] in Central America.

Add to that the FACT that no flight crew is obligated to modify a flight plan for ANY medical emergency (thought I undertstand that largesse being what it is, most [i]will[/i] as long as it is obvious this is a life-threatening emergency), and well....

you really DO 'fly at your own risk.'

[/b]

Yep, when I requested a peanut-free flight, Continental tried to deny me boarding. I basically just had to shut up if we wanted to take the flight.

That was a couple years ago- I think they've softened their approach a bit but they still don't make accomodations for PA.

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