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Posted on: Mon, 03/06/2006 - 11:28pm
CDMom's picture
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Joined: 12/30/2005 - 09:00

Funny, I just got through reading that whole thread, too. Lots to think about, for sure!
I don't necessarily have what I would call bad feelings toward FAAN. I just have learned in the last few months as I have been learning more about my DS's FA to take some of what FAAN says with a grain of salt. Sometimes it is much more informative to have the input from the people who experience these things daily.
Here's the issue that has brought me to this: I have read that the top allergy doctors have made statements that don't necessarily apply to all allergic patients, i.e. airborne reactions. While my son has never experienced any, I do believe others when they say that they have or their child has. The problem then is that everyone outside PA community comes to believe it can't happen, based on these doctors' comments.
Our particular issue is the one of whether their is any protein left in oil, peanut oil or soybean oil. Our allergist has ordered stict avoidance. Because "experts" and FAAN state that these "should be safe for most allergic individuals," companies do not have to consider these allergens. While most companies do disclose peanut oil, none that I have seen disclose whether soybean oil was used to make the mono-&/or-diglycerides, MSG, or vitamin E in their ingredients. All those things are usually or can be made from soy, but I only know that from information given by people who are not "the experts." FAAN does sell an ingredient card, but I haven't ordered it. It may list those things, I don't know.
I just feel their stance on the whole oil issue has made my life harder. There literally no premade bread products I can find that I can buy. Not intended as a whine! I just would like for manufacturers to have to include the source of those ingredients. Whew, rereading all this does sound like a whine! Not intended that way!
I know not as many people deal with the soy issue, but it is just an illustration of why I don't wholly trust FAAN. I'm sure they have done so much for the advocacy of food alleries. No doubt! They do have a lot to offer to help food allergic individuals. What I get from reading many posts on here about FAAN is that it seems that many people don't feel that FAAN is the advocate that they could be for individuals who don't fit into the "most allergic people" mold. Like I said before, I don't necessarily have bad feeling towards them. I just don't get excited either way.
I hope this helps shed some light without seeming negative. That is not what I want. I applaud the work that the founder has done.
------------------
Jamie - mom to: dd(13) - NKA; ds(10) - asthma, enviromental allergies; ds(5) - PA/TNA/EA/Soy; enviromental allergies, slight asthma?

Posted on: Tue, 03/07/2006 - 12:24am
DebO's picture
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Joined: 03/15/1999 - 09:00

Hi
Having been around a while, I can tell you that a large part of the negativity towards FAAN is their position that a peanut ban causes a "false sense of security". This has been quoted extensively back to PA parents who are requesting accomodations to have a safer environment for their allergic children.
Here is a link to the original discussion where I posted this info:
[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/001597.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/001597.html[/url]
Here is a copy of the original information from FAN - reprinted by the CBC in 1999. It is quite brief, but shows why so many people have such negative opinions of FAN...
[url="http://www.cbc.ca/consumers/market/files/health/peanuts/whynotban.html"]http://www.cbc.ca/consumers/market/files/health/peanuts/whynotban.html[/url]
Hope this helps
deb

Posted on: Tue, 03/07/2006 - 1:38am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

I agree. Anne has, on a few occasions, come across as almost hostile to those "totally hysterical" parents who want "unreasonable" accomodations. This fuels school officials who are just frothing at the mouth for reasons NOT to offer extensive accommodations, even if they are advisable in a particular situation.
My child has more allergies than Anne's, and even has a very severe egg allergy that would require the same kind of accommodations in a school as her PA.
I don't dislike FAAN. They are a good source of information for [i]most[/i] food allergic people. But they need to remember that the word [i]MOST[/i] needs to be in all their statements. Not [i]all[/i].
The oil thing is one I finally called them on... and I really believe that it was my communication with Dr. Taylor that changed the official version of peanut oil being "safe" or not... they finally admitted when I pointed out to them that the concentration he quuoted me (privately) was certainly enough to be within the range of the Italian study available at the time... then they changed that wording to "MOST" which I feel was an important change.
Yes, they are experts, but they also all have their own limitations. I am not intimidated by that. My degree is as good as anyone else's, and it gives me expertise some of them do not have. So when something seems to me to be blatantly wrong (like pn oil being totally devoid of protein) I say so.
But FAAN doesn't always listen.
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Tue, 03/07/2006 - 2:16am
Momcat's picture
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Joined: 03/15/2005 - 09:00

I wish FAAN would make more of an effort to advocate for the use of 504 Plans for students with life-threatening allergies. To me, FAAN seems very wishy-washy on the subject of 504 plans. They could be a lot more supportive.
Cathy
------------------
Mom to 6 1/2 yr old PA/TNA daughter and 3 yr old son who is allergic to eggs.

Posted on: Tue, 03/07/2006 - 2:41am
samirosenjacken's picture
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Joined: 09/30/2002 - 09:00

Ok, so I see there are some hard feelings but I guess I just don't understand them.
To answer the question, what has FAAN done to advocate for me.. I really don't EXPECT them to advocate for me. I use FAAN as a resourse. I buy their products, I go to their conferences, I try to educate myself so I can then educate others. When I had a problem with my daughters school and the 504 vs. the americans agains disability act the lawyer at FAAN was extremely helpful. He helped me understand the laws and what I needed to do to help my daughter. FAAN has done a great deal to bring awareness to this condition. While they may not advocate for individuals, I do believe they advocate for the cause.
As far as the peanut oil being safe vs unsafe discussion, Dr. Wood advised all of us NOT to eat anything with peanut oil. He was very clear on this that it would be too difficult to tell if it was denatured or not and he told us not to chance it.
Lastly, on a personal level I do not see the need for a peanut ban. My girls are severly allergic.. they both could have died on us and my younger daughter has been diagnosed as "exquisitely" allergic to peanuts. I find it is more beneficial to educate others on this than to just ban it and hope people understand. My girls' both have peanut free classrooms and we have strict precautions put into place for them. Would I be happy if the school and district went peanut free, sure. But would I feel "safer?" Probably not. I know now that my girls are being properly watched and everyone is on their guard for the slightest thing to be wrong. They all know what to look out for and I have the support of the entire school. Students are well educated, staff is well educated and my girls are very safe. We didn't need to ban peanuts to do it. I truly feel my girls are in a better place this way because they are aware of what to look out for and how to look out for themselves. They never forget they are allergic and they know they need to keep their eyes open to be safe. I can honestly say if I was given a choice to keep the girls where they are or move them to a peanut free school, I would stay put.
My personal opinion is to educate and educate and educate some more rather than to try to ban it. Drugs are supposedly banned yet they are everywhere. Are you going to teach your kids to avoid drugs and why or are you just going to assume because they are illegal your kids are safe? (retorical question) I can't put my kids in a bubble because some day, that bubble will burst and they need to know what to do to help themselves. That's my philosphy. Teach them to take care of themselves, plain and simple.

Posted on: Tue, 03/07/2006 - 2:48am
Peg541's picture
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Joined: 12/29/2002 - 09:00

I have nothing but praise and good feelings for FAAN.
They were there for me when there was no internet and I had to do all of my own research and educating my son.
FAAN sent me two videotapes I could not afford to buy at the time. I copied them and sent them back. I had written complaining that the tapes were so important for me to see yet they were so expensive. (at the time)
FAAN provided me and my son with vaulable information to help him get thru many challenging times in his life including new schools, summer camp, college, and travel abroad.
It's OK with me if FAAN wants to be in cahoots with the peanut people. Someone has to. They are not going to stop growing peanuts and if we work together with the peanut people maybe eventually we can come to some good.
I know that ALL of us here want that good to be tomorrow but it is not going to happen that quickly.
I will always support FAAN.
Peggy

Posted on: Tue, 03/07/2006 - 3:58am
Christabelle's picture
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Joined: 10/03/2004 - 09:00

I dislike FAAN because schools seem to look to them as THE authority - and who says they should be? They do, but so what? Can I just go out tomorrow and form the Absolute Last Word on Peanut Allergy Safety Committee and expect everyone to bow to my will on the matter?
Their 'false sense of security' argument is what gets on my nerves the absolute most. Why is it ok to advocate against a false sense of security for peanut allergies, but when it comes to crosswalks, metal detectors, gun bans, or any other thing that is implemented in school to help reduce the risk but not necessarily guarantee the risk is zero?
They take a big all-or-nothing stance and it drives me crazy. Peanut bans would lesson peanut allergen and that would be a good thing. It would not give ME a false sense of security.
Their arrogance in setting themselves up as Authority #1, and the sheeplike schools and media who blindly follow them, annoy the **** out of me.
I am also not entirely convinced that their peanut money funding doesn't influence some of their statements. Some of the stuff they issue seems so slap-in-the-face to parents trying to safeguard their allergic children.
With friends like these, who needs enemies...

Posted on: Tue, 03/07/2006 - 4:02am
Christabelle's picture
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Joined: 10/03/2004 - 09:00

Let me add that I do not see how people take the stance that keeping more peanut allergen out of school does not make it a safer school. Less peanut allergen = less likelihood my daughter will come into contact with it.
Period.
Education is fine and dandy, but my daughter and her friends and teachers can have all the education in the world about the condition but if there is allergen all over the playground monkey bars, the bathroom stall doors, the cafeteria in the air, the classroom, and everywhere else in the school because peanuts are allowed everywhere...and my daughter can't be educated to the point of being able to detect every microscopic peanut particle all over everything - how will that help, exactly?
It's not logical in practical terms to place education over less allergen. Less peanut allergen is better.

Posted on: Tue, 03/07/2006 - 6:17am
samirosenjacken's picture
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Joined: 09/30/2002 - 09:00

Quote:Originally posted by Christabelle:
[b]Let me add that I do not see how people take the stance that keeping more peanut allergen out of school does not make it a safer school. Less peanut allergen = less likelihood my daughter will come into contact with it.
Period.
Education is fine and dandy, but my daughter and her friends and teachers can have all the education in the world about the condition but if there is allergen all over the playground monkey bars, the bathroom stall doors, the cafeteria in the air, the classroom, and everywhere else in the school because peanuts are allowed everywhere...and my daughter can't be educated to the point of being able to detect every microscopic peanut particle all over everything - how will that help, exactly?
It's not logical in practical terms to place education over less allergen. Less peanut allergen is better. [/b]
SO, I am guessing your child does not leave the house ever? She doesn't go to other people's homes? Doesn't go to playgrounds? Restaurants? Movie theaters? The mall? Church? Everywhere you go once you leave your home you run the risk of coming in contact with the allergen. Do you wipe down the jungle gym at the park or isn't she allowed to play? Does she wear a rubber suit and mask to the grocery store? I guess I just don't understand how you can avoid the allergen totally and completely. I see how you can minimize contact, which is what we do at school, but it can never be totally avoided.

Posted on: Tue, 03/07/2006 - 6:38am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

This is the same argument that non-PA parents constantly throw out... *sigh*... the fact is that we have many mystery reactions living in the RESTRICTED way that we do... we have decided (with her) that we need to use the mystery reactions (aerosol and contact in places that should be food-free) to let her learn management strategy.
I can't answer for anyone else, but only for our situation.
Which involves NOT going to other people's houses much, not taking DD to the grocery store, not going to sporting events, not going to restaurants, not going to public parks (as a general rule), not, not, not.
So yes, we do keep my daughter in a bubble. We feel we have to. So that she can LEARN how to manage her allergy. Because if she were in places where she routintely could come into contact with pn protein, we couldn't afford to let her make mistakes as she learns. So we keep her in a restricted environment because it is the only way that we can allow her to manage things herself. I don't see it as really any different from using internet controls and not allowing "private" internet time with your children...sure its artificial. But hey, they're KIDS. They don't have the greatest judgement-- that's what we're there for, right?
Can I ask what's up with this general topic over the last couple of days, Samirosenjacken? Why isn't it okay for other people to have a different opinion? More specifically, a more conservative approach. Nobody is saying you are making the wrong choices for your own family. Nobody is saying your child is "less allergic" or anything like that.
Has something come up that rubbed you the wrong way? You seem kinda cranked up, relative to normal. (I don't mean that negatively... really I don't. I enjoy hearing how you manage your own situation. You just seem grumpy, that's all, and I am hoping that nothing is wrong.)
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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