Talking Allergies

Division Amongst Allergy Parents?
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Author:  aaronsmom [ Mon Dec 28, 2009 3:28 am ]
Post subject:  Division Amongst Allergy Parents?

This thread was broken off from the original topic of reaction to Chatelaine's response to the negative outpouring to its derogatory article re peanut allergy accommodations. Aaronsmom raises the issue of division within the allergy community. She also discusses the issue here: viewtopic.php?f=37&t=5148
To comment about Chatelaine's response see this thread: viewtopic.php?f=35&t=4957&start=120
Thanks, Gwen

But on the upside, I think that as a group, we did extremely well. We responded in droves, and if anyone has about 15 hours to spare, read through the 600+ comments on their website. The responses were heartfelt, intelligent and persuasive for the most part. There were much fewer really negative comments than previous articles of that type have generated, and many of the comments were from people who did not have kids with food allergies, but were supportive of our situation, which is lovely.

One thing that bothered me was the negative comments from people who had kids with allergies to things other than peanuts felt that kids with peanut allergy did not deserve accommodation. What's up with that? I thought we were "one for all and all for one" and all that, and that the problem was viewed as anaphylaxis, rather than what was causing it. Is something different going on in the schools?...if it has been your experience, please private message me about it.

Author:  Momtobunches [ Mon Dec 28, 2009 1:16 pm ]
Post subject:  Division Amoungst Allergy Parents?

I think the negative comments stem from the fact that the writer of the article pointed out that there are other life-threatening allergies like milk and egg that don't seem to be banned in schools, and yet those kids seem to get through school just fine. I think that it is a point that deserves some attention, actually. The belief seems to be that peanut is somehow more dangerous than milk / egg, but as we all know, any allergen can cause anaphylaxis, at any amount. I think one comment was something along the lines of "any food that could cause a child to have anaphylaxis shoud be banned, PERIOD." Really? Is that woman (who was the mother of a peanut-allergic child) really prepared to never, ever send cheese / yogurt / anything with butter / modified milk ingredients (in almost everything), milk, chocolate milk, etc to school? I've seen a child have anaphylaxis to trace amounts of milk, and we all know what happened to Sabrina. And don't try to argue that peanut butter is somehow more sticky / messy than yogurt tubes! And dripping milk cartons! My son has actually asked me why everyone seems to protect the PA kids, but not him and the others with milk / egg allergies? I think he has a point .... It's like saying that 70% of the allergic kids lives are worth saving, but the other 30% have to fend for themselves because it's not possible to ban a whole food group like dairy.

My school has a nut ban in place, and I'm meeting with the principal in January to discuss possible ways to make the school completely allergy-safe for all allergic kids, not just the PA kids.... and it does not involve food bans.

My opinion is a mix - since it's so easy to do, go ahead an ban nuts / peanuts because it's not going to deny any kid nutritionally. But I sincerely wish that it didn't stop there! Unfortunately, the nut ban sends a message to some parents that it means their PA kid can go ahead an eat anything, and guess what .... 2 children ate nut-contaminated treats on Valentine's Day last year! What did the school do? They sent out a reminder that there are to be no nuts sent to school. What SHOULD have happened, was a wake-up call to teachers / parents and students that NO CHILD WITH AN ALLERGY SHOULD EVER EAT ANYTHING AT SCHOOL THAT HAS NOT BEEN SENT FROM HOME. Peanuts are going to get into the school regardless of our efforts, and do we really expect 200 sets of parents to be able to read labels like we do? It took us a long time to learn how to do it ....

Oops - got a little sidetracked there. My point is that food bans are not the solution, but maybe a part of the overall strategy if it's feasable. So while I didn't leave any negative comments on the site because I supported our message, I kind of understand where they are coming from. By the way, my son is allergic to nuts as well, but has never had an accidental exposure to them - only the time that he was fed a brownie with walnuts (when we discovered the allergy) and at a recent food challenge at the allergists. We find avoiding nuts to be a piece of cake compared to trying to avoid dairy. If we are all on the same page with this then you might try to understand our frustrations at constantly being "left out" of the main message. It seems to always be about the peanut.

Author:  cauger [ Wed Dec 30, 2009 9:06 pm ]
Post subject:  Re: Division Amoungst Allergy Parents?

Momtobunches wrote:

If we are all on the same page with this then you might try to understand our frustrations at constantly being "left out" of the main message. It seems to always be about the peanut.

I know how this feels! I didn't post a negative comment of course either, it would undermine the message, but I also don't feel that a food ban is an effective way to combat allergies. I've learned a lot in the past 10 months about allergies since we discovered our daughters allergies to (progressively) dairy, egg, beef, peanut (and most likely nut/seafood - unconfirmed by actual exposure). I used to work at the YMCA, and they have a peanut ban in their daycare, which makes sense to me, because children under 5 wont all understand no food sharing, but by the time they enter school, they should. I know kids don't wash their hands properly and it could lead to a reaction if a toy is shared, but this can happen if you touch anything public, school or not and we need to learn how to deal.

I haven't yet had to tackle explaining the allergy to my daughter, but she will learn to never touch any food/candy given to her by anyone but myself or my husband, and perhaps another trusted adult, but at the moment, only us. Everyone I explain the allergy to don't understand that a dairy allergy can be as fatal as a peanut allergy, they think I mean upset stomach (lactose intolerance issues), and i've had to physically stop people from giving her food/candy for this reason, because if she can react to something I cook using all possible precautions (which has happened) I don't trust anything else.

What needs to happen in my mind is more education and maybe fewer bans would actually make people more cautious and aware of the situation. When I was a child, our elementary school had 2 peaniut allergic children in it, and one was in our grade. Every year a letter was sent home and the children were brought together to explain the allergy and what we could do to prevent it. I got to bring my peanut butter sandwich to school, but I knew if I had it in my lunch, I had to sit at a different lunch table and wash my hands carefully afterwards. As far as I remember, there was ever only one incident in our 6 years in school, and it wasn't an anaphylactic reaction, it was a careless mistake ont he part of a student who handeed the boy a mr. big (sealed) because he forgot.

Author:  katec [ Wed Dec 30, 2009 11:32 pm ]
Post subject:  Re: Division Amoungst Allergy Parents?

Our school and local school board has been very supportive of our daughter. She has multiple allergies to milk, egg and peanuts. I think the work that many peanut allergic parents did years ago has helped us in our community. When I try to explain her milk and egg allergy to people I can refer to their prior knowledge of peanut allergies.

I think Sabrina's law in Ontario was well written. It requires that reasonable risk reduction strategies are in place for allergic children. It does not suggest bans but it does allow for food restrictions where appropriate. I think what we all need to remember is there will not be one solution or set of strategies that will work well in all situations. There are too many variables - school facilities (cafeteria? sinks in the classroom? in the portable?), custodial hours in the schools (are desks/sinks regularly cleaned?), supervision (how many available during lunches), behaviour in the school, multiple allergies, age of the child with allergies, location of the school (remote community vs. urban). In some cases, bans of allergens do make sense and in other cases bans might not be necessary. Our school is a peanut/nut free school and in my daughter's class we have measures in place to deal with her milk and egg allergies.

Author:  lakeswimr [ Thu Dec 31, 2009 10:39 pm ]
Post subject:  Re: Division Amoungst Allergy Parents?

I have seen this same debate multiple times. Someone who doesn't have peanut allergy points out their allergens aren't banned and says peanuts shouldn't be either and the debate starts. The thing is, (and my child has MFAs including peanuts, milk, egg and more), is that peanuts and seeds *are* more potent allergens than other allergens and can cause anaphylaxis from much smaller amounts of exposure than other allergens. Additionally, peanuts are responsible for the majority of food allergy fatalities. The Peanut Allergy Answer Book by Dr. Young says it takes 1000 times LESS food residue to cause a reaction to peanuts than to most other allergens such as milk and egg and very small amounts of milk and egg can cause reactions. Nuts are also highly potent as well.

That doesn't mean that we shouldn't protect our milk and egg-allergic children. It does mean that there is something to the idea that peanut allergy *is* somewhat more dangerous to many with allergies than other allergens.

I don't want my child in a room with ANY of his many allergens. Luckily he has an allergen-free classroom. I support allergen-free classrooms if possible with snacks and lunch in the cafeteria. If that can't happen then very good cleaning and handwashing have to happen and lots of other precautions. All children who have allergies should be safe in school.

I wish those who have non-peanut allergy didn't try to *take away bans* that were often hard-won by those who deal with peanut allergy in the name of 'fairness'. How about trying to accommodate each child to their own needs?

Our school doesn't have any bans but if one were offered for peanuts I'd take up fast. I wouldn't trade the safety accommodations we presently have to get a peanut ban but I'd gladly add it to our list of accommodations any day. I can't count the number of times I have thought about the amount of peanut butter in that school at lunch and how DS goes out to play at recess right after lunch. If anything is going to cause him to have a reaction at school pb residue on hands is the strongest candidate and it worries me. I don't have that same level of fear from most of DS's other allergens because the potency of those things isn't the same level and the mess factor can't match the stickiness of peanut butter. Hummus probably comes a close second along with other nut butters in my worries but on a given day half the kids in DS's grade might have pb for lunch. I'd LOVE to have that eliminated. It would be MUCH safer for DS.

I'd like it if people stuck to protecting their own kids and didn't try to take away from others.

Author:  lakeswimr [ Thu Dec 31, 2009 10:41 pm ]
Post subject:  Re: Division Amoungst Allergy Parents?

Also, my son has had multiple systemic reactions to contact ingestion--nearly all from playing with toys that had been contaminated by other children who had pb on their hands. (This happened at friends homes, not at school.) So, I do fear contact ingestion reactions--reactions where DS touches something x-contamed with pb, etc and then touches eyes, nose or mouth.

Author:  Mylène [ Sat Jan 02, 2010 6:53 pm ]
Post subject:  Re: Division Amoungst Allergy Parents?

I'm not sure where the discussion started... I'll just add a little something... coming from a non-parent and non-peanut-allergic.

I have to admit that for years I've had something against "parents of only peanut/nut allergic kids"... This is for one good reason... I've always had to defend my own allergies against every peanut in the world! I've been part of the "allergy community" for over 15 years, many years being really active (a lot less in the past few years). But the one thing I've always had everyone throw in my face was that peanuts should be banned from the world!!!! But none of the "only-peanut-allergy" people were EVER ready to give up fish! What can cause you anaphylaxis should not exist, but what causes me anaphylaxis is your right to eat. With the rise of multiple food allergies over the past few years, I have seen a shift in the strategies of parents (and adults) dealing with allergies. Yes, peanut allergies are more common than most, yes most times they are anaphylaxis... but they are not alone!

You should see people panic when I eat peanut butter!!!! Some people have even given me speaches that peanuts should not be permitted in the workplace as they can kill!!!! Ok, I'm willing to give it up, but please point me out the person that would react... everyone of those pointed out their own kids! (of course, not coming into work :scratchy ) But those same people screaming out that peanuts should be banned from THEIR workplace because THEIR kids are allergic... have been the ones screaming that they are not willing to accomodate my "no-fish on this floor" policy even if I am the one they could kill by eating their tuna sandwich! (and I do work in my workplace, and I react very severly to the smell... so... the ban is logical)

I am not willing to take away the peanut/nut bans of those who have worked hard to earn them... but sometimes (in my own mind) I question the level of ban (i.e. ban of "may contain")... but would like to see more "open mind" from those I classify in the "only-peanut/nut allergic parents"... There are other allergies out there AS SEVERE as the ones you guys are dealing with... and there are also adults dealing with allergies...

(sorry if I'm venting a little... but I've met too many close-minded parents over the year, I know how division can come amongts allergics...)

Author:  aaronsmom [ Mon Jan 04, 2010 12:23 am ]
Post subject:  Re: Division Amoungst Allergy Parents?

Well, this is very interesting...and it's really important that we all see all sides of this. So it's good to talk it all out, so we can all see what is happening in reality at workplaces and schools.

There was one comment that really bothered me, Mylene, that was similar to yours, in that peanut was restricted in a school that didn't have any kids with anaphylaxis to it :scratchy , but when a kid with anaphylaxis to dairy attended, there was no strategies to minimize reactions put in place :scratchy . It would seem like common sense to try to protect the kids attending the school rather than put limitations for kids that aren't even affected. It would seem like common sense to protect you, Mylene, when you are at work. I guess that should be written into the guidelines.

I can really understand how frustrating it must be to be dealing with the same issue (anaphylaxis), and people acting like it wasn't as serious because it is less common, especially with fish, as it has been proven that fish proteins are airborne in cooking, and so could cause anaphylaxis, just though smell, as the smell would contain fish protein.

Author:  Mylène [ Mon Jan 04, 2010 1:57 pm ]
Post subject:  Re: Division Amongst Allergy Parents?

(thanks Gwen for the links :oops: )

I "left" the active-allergy world a couple of years ago when I got tired of fighting against parents with only-peanut allergy... me being the non-peanut-allergy non-parent... getting told over and over that I did not "get" what they were fighting for... I decided to fight my own fights to safely live my own life. Peanut-allergy fight had their good points with many schools protecting the kids... but it also had its negative side in making everyone tired of hearing about allergies as shcools that did not even have peanut-allergic kids had put a ban on even "may contain peanut" foods! (I had to try to explain that one to a good friend of mine :roll: ) And it also acted like the only dangerous allergy was peanut, all others were just... well, nothing!

I am more of the opinion that we need to protect the kids we actually have and deal with the allergies we actually have to deal with. Banning all "may contain" foods so that your kid can eat whatever he wants without worry... that is just living in another reality, that's how accidents happen! :scratchy Yes it is necessary to reduce risk, but you cannot have your kid live in a virtual bubble. Maybe it's because I have been living with a fish-ban for the past 10 years that I see things differently. Before I started to react to even the smell, I was still going to restaurants, not expecting them to not have any fish on the menu... but taking the items that were safe for me... too bad if the fries were fried with the fish-sticks, that simply ment no fries for me... not no fish for everyone around. Now that I react that much to fish, I can't go to restaurants anymore (except Zero8 :mrgreen: ). I have to impose it everywhere I go... but I know real well that I can't go everywhere and it is not my god-given right to be able to go everywhere! I go where I can, I ask around, I get special accomodations where I can and... I live my life pretty well dispite everything! But I know where to draw the line... I will not ask a restaurant to not serve fish because my co-workers are having their Christmas party there... I will not impose my 35 allergies at the office pot luck so that I can eat everything I was like everyone else... no, I impose what is a direct threat to my life and for the rest... well, I bring my lunch!

That's just my opinion... but as life goes on, we have to adapt... the kids of today will grow up and face new challenges... how to bring your lunch, as an adult, in an office board meeting... and odd challenges like "how can I pick up my kid at daycare on fish day?" :roll: :lol: The "fight" to protect allergic people is not over, but we have to make sure that we don't go over-board and have the opposite effect.

Author:  aaronsmom [ Mon Jan 04, 2010 10:21 pm ]
Post subject:  Re: Division Amongst Allergy Parents?

I think the best protocol for people with anaphylaxis is always to bring their own safe food, unless they are absolutely sure they can eat safely.

My understanding is that allergen restrictions in schools are put in place to prevent cross-contamination and touch reactions, not to enable kids with anaphylaxis to be assurred they can eat whatever they please.

I think that society took a while to understand that the new rise of seriously food allergic individuals were an actuality, and in many cases, there is still disbelief. Very few people believed me 10 years ago when I told them peanuts were potentially life threatening for some people.

I think people who don't have to deal with it will take a while to figure out what needs to happen, but I think that if we all work together, and don't differentiate based on allergen, we can all work to create fairness and balance for all. There isn't a magazine that is called Peanut-free Living, and there is is no Peanut-free Canada, it's Allergic Living and Anaphylaxis Canada, because we need a climate of inclusiveness.

I hope that, now you are back Mylene, that you have a better experience.

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