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Posted on: Fri, 02/02/2007 - 3:32am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

I too admire Anne for her efforts. But as the parent of a child that NEEDS very extreme accommodations, I still flinch when she opens her mouth.
When she says that "Bans don't work" and "PN oil is fine," and "There is no need for ______." She is clearly not speaking about MY child. And that hurts. What hurts even more is that she has a voice that I don't. And, incidentally, there is now pretty convincing evidence that suggests that bans ARE helpful-- from Canada, where they haven't ever bought into the "false sense of security" argument.
So in short, I only wish that FAAN would remain neutral on issues rather than making statements like that.
Does it occur to no one else that the people she is excluding (at the far end of the spectrum) might be the ones MOST in need of advocacy and support? I found FAAN useless-- it seemed that everything I read there concluded that my child with severe MFA simply didn't "really exist." It was very sad and isolating. And frightening-- we felt as though this nationally recognized organization was telling us our daughter was a medical freak of some kind and that we should be seeing a psychological professional.
I am glad that it exists for others, please don't misunderstand me... but who advocates for the most vulnerable? I mean, there ARE kids out there who are [i]that[/i] sensitive. (And no, not just to peanuts. I am well aware of that.) It is IMO impossible to know what aerosol sensitivity is like to live with until you have done it.

Posted on: Fri, 02/02/2007 - 4:35am
notnutty's picture
Joined: 03/15/2004 - 09:00

Quote:Originally posted by BriandBrinasmom:
[b]Notnutty, you've missed the point. I would not feel differently if my child were contact allergic because it's not effective to approach food allergy advocacy concentrating on the worst case scenarios. IMHO, one of the reasons food allergies is taken less seriously is because the general public associates them with a very small majority of hysterical moms. (And again, I'm not saying that anyone in this thread falls into that category - everyone has to judge that for themselves.)
Having a child with anaphylactic milk allergy already puts my son in a very high risk situation - perhaps as high as a contact peanut allergy. I still don't think I should tell everyone in his school they can't drink milk.
And regarding misdiagnosed peanut allergy - what I posted was about the *article*. It said there was a lot of false positive diagnosis of peanut allergy going on - I agree. If this were the situation with my child, I would have undergone a food challenge at 5. We have been doing food challenges for foods he's tested allergic to for six years now, some at home, some in the office, a few in the hospital. But this is obviously up to each parent.
I'm still p*ssed about this thread. I was talking about the article, and none of the regulars missed the opportunity to pile on here.[/b]
No, I did not miss your point. I did not state that FAAN should be concentrating on the worst case scenarios. I stated that
"Perhaps FAAN should look at the entire group of people they are advocating for to make sure, minimally, they are not saying things that are 'advocating' AGAINST children like mine."
There is a big difference between these two statements.
Corvallis Mom...thank you once again for saying so clearly what I have been trying to say all along. I appreciate your post.

Posted on: Fri, 02/02/2007 - 4:42am
TwokidsNJ's picture
Joined: 05/28/2005 - 09:00

The doctor sounds somewhat sincere (though I wish his followup email had been published as well). In his last sentence, he sounds a little concerned about a lawsuit - LOL!
BriandBri- I think you are giving too much credit to Anne Marie for partnering with the food industries. I am betting the peanut industry approached FAAN because they were afraid of consumption declining if there are school bans and airline bans. That is where I think the conflict of interest is.
Canada does not have a big, powerful peanut industry, and they do endorse peanut/tn bans in schools.
And peanut/tn bans are handled successfully in an increasing number of preschools.
[This message has been edited by TwokidsNJ (edited February 02, 2007).]

Posted on: Fri, 02/02/2007 - 5:12am
LisaM's picture
Joined: 11/04/2005 - 09:00

Corvallis mom, as usual I *totally* agree.
[This message has been edited by LisaM (edited February 03, 2007).]

Posted on: Fri, 02/02/2007 - 5:38am
BriandBrinasmom's picture
Joined: 10/20/2006 - 09:00

Three thoughts:
1. There are stages to advocacy. Peanut and food allergies weren't even in the public awareness 10 years ago. Like any disability that requires others to make accommodations, it takes time to get people to change. While you may not believe Anna M-F speaks for your child today, perhaps it will lay the groundwork for someone to be able to speak for your child tomorrow.
(Perhaps the mothers most critical of AMF in this thread should be the speakers - get out there!)
2. I don't think it's realistic to think FAAN or anyone will ever educate people to willingly accommodate the needs of the "most vulnerable". My son is in this category - his last reaction was because someone hit him in the mouth during a food fight with a piece of pizza. I don't waste my time whining about how he should have a milk-free school, because it's not going to happen. I don't blame people who help me because they don't help me enough.
3. Twokids, I think it's great the peanut industry approached FAAN "because they were afraid." That's how advocacy groups work - they take money from the people who have a vested interest in giving it because they're afraid of bad publicity.
Of course FAAN would not exist without money from the food industry, but what a wonderful thing that FAAN IS there to collect the money and do something useful with it. Doesn't it make sense to form a win-win where everyone invests in education and research? Why do you see this as a bad thing?

Posted on: Fri, 02/02/2007 - 5:59am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

...I don't blame people who help me because they don't help me enough.
Nor do I. But think for a moment how it would feel to have a national [i]spokesperson[/i] of sorts make the claim that "Children outgrow their milk allergies by the time they attend school. They really don't require any special accommodations anyway, since most milk allergies are really quite mild. They have to learn to live in the real world."
Now imagine that all your friends and family repeatedly "quote" that to you in an effort to undermine all that you try to do to allow any semblance of safety in your child's life... how would that feel?
[i] Please note that Anne has never made such a statement, though it is nearly as true as some that she has made about PA...might this be because her own experience is different?[/i]

Posted on: Fri, 02/02/2007 - 6:59am
BriandBrinasmom's picture
Joined: 10/20/2006 - 09:00

Corvallis, you can't be serious...
How would I feel? I feel exactly like I do now. The aaai.org states most milk allergies are outgrown by age three. People don't bother to make statements about accommodating milk-allergic children in schools, because there is no chance in **** they're going to take milk out of schools just for one kid. Almost everyone I talk with assumed that my kid gets a stomach-ache if he drinks milk.
I understand the issue. I do. I just don't agree with your conclusion. I cannot expect the world to accommodate my son. I will not raise him to expect this type of accommodation. I will not blame Anne M-F because she doesn't lobby for my child. He IS the exception.
I think it's much better - and safer - that he know now that the world does not understand his allergy and will never understand his allergy.

Posted on: Fri, 02/02/2007 - 7:22am
krc's picture
Joined: 01/16/2007 - 09:00

Quote from the article:
the Archives of Internal Medicine in 2004 reported that the average person's chance of food-induced anaphylaxis is about 4 in 100,000 per year. Roughly the same number of Americans each year die from lightning strikes as from peanut allergies.
Ok--I do not understand this statistic. This says "the average person's chance" not the allergic child's chance, right?
So because my child is dx'd as peanut allergic, asthmatic, and has had an anaphylactic rx in the past, this statistic does not even apply to *my* child.
I assume if you only count those w/ dx'd severe food allergies (instead of the average person) chances would be much higher!!??
I do not think articles such as this do much to help the allergic community at all.
I know all too well the looks we already receive from others at school and such when explaining the severity of peanut allergies.
It's like the only way I could *prove* our need for nut free classrooms is if they actually SEE her in full blown anaphylaxis. So frustrating....

Posted on: Fri, 02/02/2007 - 7:31am
krc's picture
Joined: 01/16/2007 - 09:00

(Quote from article) Some recent data suggest that avoiding antireflux medications like Zantac, peanut-containing diaper and breast creams, and soy-based formulas may be sensible for infants with a strong family history of peanut allergy.(quote)
I will say I do not think I have heard to avoid anireflux meds before. My 10yo pa dd was on Zantac for over 2 yrs. She was also on soy formula from 2 mos. on. Interesting...

Posted on: Fri, 02/02/2007 - 8:20am
BriandBrinasmom's picture
Joined: 10/20/2006 - 09:00

Antireflux meds stop stomach acid, which can allow proteins to pass through to the small intestine more intact than they otherwise would. Plus, infants have more porous intestinal walls, so proteins that make it this far can pass through easier than in adults, triggering an immune response.
Regarding the statistic, the article was not trying to establish the possibility of anaphylaxis in an allergic child. It was trying to establish the rarety of it overall. Yes, the incidence is obviously higher for kids with food allergies, but overall, only a few hundred children a year die from food anaphylaxis.
This is not something parents of food allergic children should take personally. It's a statistic. Life is risky - food allergy risk has to be put in perspective as one of many risks.
5000 kids a year die from asthma. My son has asthma. Should this worry me more than his food allergies?
200 kids a year die from bike accidents. Should we not let our children ride a bike?
In case you're curious, I did try to figure the odds once. This is not perfect because a lot of these areas overlap, but...
- 6 million allergic children, assume 600,000 (10%) capable of having a reaction that could result in death
- 200 deaths (0.6% of those who visit the ER in a given year)
70 years of life - 14,000 deaths in the next 70 years from 600,000 people who are in the high-risk category: means my son has a (very roughly) 2.3% chance of dying from a food allergy in his lifetime.
2%. Same risk as having a baby that dies at birth or is born with a major defect. Life is risky.


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