I need help formulating an educated response to this:

[CMdeux]

Yeah-- I have really seen this difference in people with only PA, as opposed to those of us that have reason to fear additional/other anaphylaxis triggers.  For example, if you have two people who both have really low thresholds, and one of them is peanut allergic and the other one is allergic to, say, milk and wheat...

PA person:  "Does that have nuts in it?? OMG-- it does!  Keep that awayyyyyy...."

MFA/OtherFA person:  "Food.  You have FOOD. (Why? WHY? WHY??)  Food is the devil.  I will avoid you and your foody-food-food."

Well, you get the idea.  When you are MFA, somehow, all food has to be viewed as potentially dangerous in a way that PA people tend to view little kids with sandwiches or adults with granola bars or mystery handfuls of snacks as suspicious.

Administrators, school nurses, and teachers really don't need any help thinking that kids who are allergic to eggs, milk, or wheat are "not that severe" in terms of possible reaction outcomes.

[rainbow]

Sorry, I actually meant celiac instead of "wheat allergy".  There are more and more kids out there with celiac...and sometimes I've heard of parents of celiac kids upset that kids with nut allergies have accomodations at school, wheras their kids do not.

However, kids with celiac are not carrying Epipens, and indicate they get an "upset stomach" or "diarrhea" if they ingest the allergen (for example, an entire wheat bagel vs. gluten free bagel).  This is different than a kid with peanut allergy that can die after ingesting one bite.  And yes, there are MORE kids with peanut/tree nut allergies.

But see, I just made this mistake after reading here for years - and knowing several kids with celiac and dairy (i.e., anaphylactic dairy) allergies.

Agree about food free celebrations...and does sound like many schools are moving in this direction.

[maeve]

IMO, the reason for the accomodation is RISK AVOIDANCE and the DATA that states most deaths in schools are from peanuts/nuts (see data above).

I don't think most of these people want a substitute - they just want to argue. It's not worth engaging with them.

Some people even on this site have trouble understanding why nuts get more accomodations. The simple fact is 90% of deaths in school from peanuts/nuts.  Milk allergy - if anaphylactic - requires special consideration and unique accomodations (but people won't necessarily understand it b/c they have trouble separating from intolerance).  Also, a "nut free classroom" has been generally accepted as an appropriate accomodation and one that is not difficult for schools to implement.

The slippery slope arguments (what if someone has gluten allergy? what about pet hair? etc). do not hold water (gluten allergy does not cause immediate anaphylactic shock upon ingestion; pet hair usually results in sneezing, etc).

You really shouldn't make generalizations.  My daughter's last allergic reaction was from egg residue in a school setting.  Also, pet dander doesn't just result in sneezing.  I had to take my DD to the doctor twice for conjunctivitis related to an allergic reaction to pet dander.  Pet dander is also potentially a trigger for those with asthma.

My DD is also allergic to peanuts and tree nuts, but I'm so sick and tired of everyone only focusing on nuts.  Any food allergy can cause anaphylaxsis.

ETA:  I made my post before getting to the second page; however, I'll still leave my response.

[rainbow]

But see, that is my point. My child also has pet allergies, asthma, and MFA (anaphylactic to 4 foods besides Peanuts/Nuts) -- however, in the school setting, it is much easier to avoid the other foods, and pet dander. If I talk about all of them, then people don't understand and stop listening.  The others are all documented in IHCP/504 as the nurse needs to know and there are some quiet accomodations (e.g., no science experiments or baking projects with egg - my child also reacts to egg on contact to egg). 

People understand a peanut/nut free classroom, but once you start adding common and harder-to-avoid foods like milk and egg, people don't get get it. Peanuts/nuts are very easy to avoid; the others are much more difficult and people haven't heard as much about Epipens/anaphylaxis from those.  I'm talking about most parents/school staff - not people on this board living it every day. FYI, I do think milk MUST be avoided in the classroom for a child with anaphylactic milk allergy -- but the 2 moms of kids with ana dairy allergy in our school have not been successful. I even tried to support them with information from Sicherer, but pricinipal/nurse/teachers have not listened and still allow pizza days IN the classroom and segregate the allergy kid to another table. 

Where I'm really coming from is the celiac angle. I've gotten rolled eyes and arguments from these moms because they don't see why their "allergy" isn't accomodated in the same way.  But then they will bring gluten free brownies/cookies to class with nut warnings for a birthday celebration - completely ignoring the nurse's treat list which includes safe foods for all such as Popsicles.  While I know celiac requires *major* diet change and management, they  risk of death by ingestion of a small piece of the wrong food is not an issue.  I agree that these kids should be included in celebrations by only serving safe foods for all or better yet, non-food celebrations (which have only been lightly encouraged in our school district).

[YouKnowWho]

Keep in mind that those with Celiac are at risk if gluten is ingested.  We are not just talking stomach cramps and diahreah, we are talking about upping their risks for cancer and a variety of other fatal disorders down the road.  So while I understand the whole safe food for all aspect, you are not going to be making friends either if you discount the reaction those with Celiac will suffer either.

Ideally, all kids regardless of their allergies or disorders should be taken into account.  And no, you are not going to be making brownie points with anyone with this whole my allergy is more important than yours attitude.  So while yes, I understand the whole banning of nuts from a classroom if it is needed (and frankly I think a blanket ban is ridiculous and even a ban just based on a child who has a nut allergy unless they have shown just cause for it to be done), I think we have a bigger fight on our hands...

The ban of all food from the classroom.  And yes, in younger grades there is generally a need for snack but even that can be done safely regardless of what allergies are in the classroom by sitting in their seats, using placemats, good handwashing techniques, etc. 

[rainbow]

YKW, to be honest...my head spins when I read many of your posts. I can't follow what you are saying much of the time. The fact is, many schools aren't going to go to no food altogether.  Peanuts/nuts are very easy to "ban" (though I never use that word); other foods are not. My child, too, has MFA. In fact, most recent reactions were not from peanuts/nuts. My kid's best friend has celiac.  But this mom lectured me when I tried to read labels at her son's bday party (ie, was checking label on hot dog bun - she yelled at me that he "Just shouldn't eat it! My son never eats the bun!" (turned out the brand was safe for sesame - the hard part was negotiating with the mom to actually SEE the label); then a couple days later, she brought brownies with walnuts (his worst ana allergy!) to class for his bday (nurse sent them home).  There was a "safe treat list" that included safe treats for all allergies (there was also a kid with autsim/MFA/dairy avoidance in the class, so Ice Pops were strongly encouraged and a few other options allowed -- but she didn't follow the list -- and FYI I still check every label at school before the food is distributed.   

Yes, it would be better if schools "got it" and stopped with all the food celebrations (esp the birthdays).  But, until then, I'll take the "peanut/nut-free classroom", thankyouverymuch.  While it doesn't address my child's 4 other allergies, it has kept him safe and included.  Parents "get" the nut free classroom and that they need to bring safe treats for celebrations (interestingly, only prob last year was with this celiac mom).  But when I start throwing in other allergies, they stop listening (ie, bagels at morning events = risk for sesame allergy; egg allergy - well he can eat it baked, but can't even touch it raw/whole...blah blah...that is when I lose them.  Already they think I'm over-the-top because I actually check labels at bday parties and send my child with an Epipen to sports and parties (the other allergic kids don't, and eat the bday cake too)...and "blame" the allergy policy on me....sorry but not in a good mood this time of year (and apologies for this affecting the tone of my posts).  I've gotten to the point (late elem and middle school) that I know what to focus on so people know what is necessary to keep my child safe (esp as I can't be there as much at these ages).   Because I was on the district committee, I also tried to educate them on anaphlactic dairy allergy - to no avail - and they just don't (want to) get it.  One of these parents takes her child out of school quite frequently, when unsafe food is brought in (ie, parties, pizza days, bdays, etc).  FAAN really needs to issue a statement educating schools on anaphylactic allergies (and suggested protocols/accomodations...but even they are reluctant to do so.

IF we want more of that, and ideally food- free classrooms, we need to lobby and educate FAAN.   While you can separate the difference between snack time (ok for younger kids to have a snack in class) vs. bday treat time, not all teachers/staff are understanding us on the difference.  I've always felt they didn't totally understand the stress parents feel regarding safety and inclusion at school (shared treats are risky!).   But Gina is there now right?  That should really help. 

[YouKnowWho]

FAAN can bite my big toe    They have done little over the years but hinder this fight in schools.  Sorry - there it is and there you have it.

And I too am feeling that stress.  (Safe freaking candy list my arse, can people just provide their own child with food or better yet, can you just can the candy and get back to that weird thing called learning, hoping you understand that my sarcasm is directed at school and not you).

I am saying that this whole my allergy is better than yours crap has to stop.  Telling people that Celiac is lesser important than nuts because your allergy is worse than mine (granted Celiac is not an allergy, but there are serious implications in regards to ingestion whether they be immediate or down the road), is just not kosher with me.  Nor is telling people that wheat, etc are not going to cause an immediate reaction.  For some people they will.  And frankly this road is hard enough without having to tell people consistently that my son's allergies to wheat, rye, barley and egg are just as serious as peanut allergies.

I get that your child is MFA - you are talking to a mom who is dealing with allergies to wheat, rye, barley, egg, peanuts and bananas.  Just for fun, I also have a child with uticaria who just hives up for the fun of it.

The fact is that I am on more on the side of the parents who get frustrated that only nuts get airtime and blanket bans.  The rest of us can be damned, right?  That is what the real world is about.  Sorry this is one of those issues that does get my panties in a wad.  Why?  Because it may just get my son killed as a result.  But unfortunately he cannot have that in his world.  He has to be called weird by has classmates because he has to be anal retentive about how he does things for his own safety.  And people still say stupid crap to him all the time like to thank his stars that he doesn't have a peanut allergy. 

If you look down an aisle at the grocery store - compare nuts to wheat.  Just do it once.  Now imagine that in a classroom, lunchroom, party, etc.  DS1 has to make accomodations in school and out of school that would never happen if he had a peanut allergy.  NEVER.
 

[rainbow]

Sigh. First of all, I never said this to anyone until today. I just have noticed the defensiveness on THIS board about PN/TNA vs. other allergies.  My kid too has multiple allergies, but it is much easier to get the PN/TNA out of the classroom than the other foods.  PN/TNA is very common and the risk of anaphylaxis is understood.  A lot more education is needed (by FAAN, Allergy professionals Etc) to achieve the same level of understanding on the other allergies (and confusion with intolerance). 

I just think it muddies the waters...because then parents get really frustrated when all party foods, or all classroom snacks, are "banned" or disallowed.  Then we lose all empathy and willingness to work with us to ensure safe foods, if the choices are so limited. Then people take the "your kid, your problem" approach, which is a setback from where we are today.

On celiac, does it qualify for 504? I'm not sure because Epi is not usually prescribed and it's not considered life threatening. Or does it qualify because major diet changes are necessary? Just curious.

[YouKnowWho]

Yes, Celiac is covered under a 504.  Technically repeated exposure can lead to life threatening illnesses.

I guess what I have been trying to say is that I really do feel for those parents and why they feel like their issues are consistently belittled because it's not PA/TNA.

What I don't understand is why their has to be food in the classroom.  I just got hit with a whammy - if my son passes several timed addition tests he can earn a banana split party.


Is it wrong as a mom that I would rather see him fail than deal with that crap?

[CMdeux]

No more wrong than it is that my DD learned early on to not be a "superstar" at anything that might mean... travel.

When rewards begin to seem like punishments because of your disability, then something is very definitely askew.

[Beach Girl]

I don`t know much about wheat allergy or celiac, but I do know that it can be life threatening.  I have been talking to the heads of Dining Services at colleges.  I have asked them what allergies have they dealt with and were there reactions.  I remember at one college he said he had a student who could not have wheat (don`t recall if it was celiac or true IgE allergy), but he said that when the student first started there, she ate a wheat cross contaminated item and became very ill, so they had to start using a separate cooking area in the kitchen to prepare her food.  It definitely did not sound like something minor.

I started kindergarten allergic to milk, nuts, egg, and a few others, and it actually helped us get the food free room.  It was actually pretty easy when my mom pointed out that almost anything anyone brought would contain one of my allergens.  She probably would not have been able to get me a food free room if I were only allergic to nuts.

[YouKnowWho]

Okay I am going to try to make more sense this morning because I need to, not because anyone wants to see me beat a dead horse anymore.  Ignore if you want but I need to say this so I can move on with my day.

My initial response regarding the post on the FB page was more about being a good ambassador.  No, you don't have to do it and it will probably clearly be met with arguments.  But this is how I look at it.  As an allergic community, we probably make up about 5% of the total allergies in this country (granted, I am pulling numbers out of my butt but when you look at what the total percentage of allergies compared to numbers here, it sounds about right).  Now, I put us in the "elite" group.  Most of us here have seen the devastation of ana rxns, school fall out, etc.  Most of the people *I know* outside of this board who deal with allergies don't think their child is as allergic as mine.  Whether that is true or not, I don't know.

Then there are the 5% of the population (again pulling numbers out of my butt, just personal experience) who think it is their God given and Constitutional right to send peanut butter in with their kids.  Arguing with these folks is pointless.  They believe in Darwin theories, etc. 

So we have 5% who understand a nut ban and 5% who want to argue it.  That leaves 90% who would like a clear explanation as to why it's been banned (not to argue with you) and would like a good list of alternatives.  Sunbutter, soy nut butter, etc that would be a good starting off point for them.  Though there are going to be those who don't care either way, I prefer to put it out there in a "good ambassador" way as opposed to having the fight with the Darwin crowd, kwim?

Now onto the other half of this argument.

I don't believe in blanket nut bans.  Sorry - I said it.  But I also think there are a lot of kids out there that have tested positive and have no reaction history and I also think there are those who react by ingestion only.  I truly think it needs to be a case by case basis.  The biggest reason that I hate blanket nut bans, it diminishes the seriousness of other allergens.  DS2 tests positive to peanuts - high enough that our allergist refuses to challenge (and he is aggressive on food challenges) but he has also had hives on several occassions with reaching his hands into bins of peanuts (please don't ask why he does it, he is determined to send me to an early grave marching to his own drummer).  Everyone makes this blanket assumption that my older DS1 is so much better off because he is only allergic to wheat, rye, barley and egg because only nuts are dangerous enough to cause anaphylaxsis.  Mind you, I still have heart palpitations on a bridge leading to the hospital because he stopped crying when he had his first ana rxn.

FAAN sucks.  I refuse to give them one dime of my money or support.  They shot themselves in the foot years ago in regards to banning food from the classroom and this whole new turn around is too little, too late.  School is not a real world situation.  I had to explain to my very serious rule following son that if he ever felt like he was in danger, he needed to walk out of the classroom immediately and I would deal with the consequences later.  He has come close twice due to "learning situations" like a classroom full of gluteny trail mix in honor of the 100th day of school being spilled out onto desks.  What I say here and what I say to him are two different things.  I vent my anger here about the food situation and him constantly being at risk.  I do not say it to him.  For him to feel uncomfortable given that he lives in a world filled with gluten says a whole lot.  He should have walked out on the 100th day but he didn't.  That honestly makes me sad.

No, I do not have a 504.  Our district doesn't think they are needed for food allergies.  Insert eye roll - I am trying again though.   Regardless if I did or not, my school doesn't go for food free classrooms.  They are delusional about the amount of crap in the classroom because they hide behind a "wellness program" and only have one party per year.  That party doesn't include garden harvesting, 100 days, celebration of Easter (gotta love public school), the end of the year ice cream party, candy for doing well on tests or keeping quiet, mints to help them concentrate, Rita's handed out at field day, popsicles and popcorn to celebrate cultural diversity, should I keep going?  My one saving grace is that birthday treats are eaten in the lunchroom so that neither of my kids feel like bigger freaks than they already are - we have safe treat buckets because the school is opposed to prepackaged treat lists (they are so unhealthy  , cause the mom with the flu and cat fur flying is healthy).  My kids can surreptiously eat their safe yet differing treats.

Our state is now in the top 10 for obesity.  As a result they have revamped school lunches to be healthier (BS) and will now be weighing my child in school.  They are also suffering for funding so days are a shade shorter, academics are ramped up and physical education is being cut.  Hmmmm.

What if, and this is purely hypothetical - we treated kids to 100 seconds of extra playground time, opted to graph objects rather than food, celebrated cultural diversity with viewing objects, etc.  What if we lobbied the states to remove extraneous foods for the benefit of those who are struggling with weight, special diets due to allergies or other disorders, etc and not make this about those evil allergy parents who want to be killjoys. 

I know, crazy, right?

[twinturbo]

Social media is the last place you want to fight out accommodations.

[rainbow]

Agree!

And if the allergies are life threatening, the child does qualify for 504. 

[Ra3chel]

Going back to the OP, I'm really fond of the car analogy:

"Well, he'll have to handle a car eventually, so it would be unrealistic and create false expectations not to have him start driving now."