Hi, Thanks again for doing this, but I wanted to bring a problem to your attention about downloading the handout.  If you click the image, the current (August) version comes up.  However, if you select "attachments" and then click the pdf file listed under "files", the July version comes up.  

I'm in tears while reading this.  It's perfect.  THANK YOU for listening and revising.  I finally have something to hand out to teachers and parents!

I agree with DashiMom.  I have had many people respond to my worries with ....he will be okay....we have his epi-pen.  Then I have to go and explain how food allergies and asthma combined aren't always fixed with a dose or two of an epi-pen.  I really think people just look at me then as if I have two heads or I am just plain nuts.  Thanks for updating and addressing so many things Lynda, but that is a great idea as a final note on any future revisions.  This is so much better than anything I had when my son was smaller....a big thank-you and hopefully people will get it from a trusted source and not just some whacko mom. 

Lynda,

The revised hand out if much improved from the original, thank you for taking all our feedback into consideration.

If there are any subsequent revisions, please consider also including a statement that lets readers know that epinephrine is not always effective in halting anaphylaxis, so strict avoidance of allergens is critical.  There seems to be a misunderstanding that there is an epinephrine safety net: If a child does have a severe reaction, just give him epinephrine, anaphylaxis stops, and no harm done.  Unfortunately, in reality, we know epinephrine does not save every child's life.

Thank you again for your consideration.

Kate, it's ready.  Just open this thread, and the download button in the initial blog post will link to the revised handout file.

I should have it for you later today!

Welcome Kate.

GREAT!  Thanks so much!  You all make my life so much easier!

Hi Bia,

I just got the updated version from the graphic designer a half hour ago. Once it's proofread, if no further changes are needed, I will post it here, probably tomorrow.

Thanks!

Lynda

Lynda,

Do you know when the revised handout will be available?  Our school would like to distribute this to the greater school community to help explain the need for policy changes, but we would like to send out the updated version.

Thanks!

Kate

Thanks Lynda!  I'm looking forward to seeing the revised handout!  I think it will end up being perfect to hand out to teachers and parents!!

Carol,

Love your comments.  Oh my gosh, I have had many tell me I should just let mine touch a bit of his allergen or sneak a small pinch into his food to desensitize him.  OMG, not outside of a doctor's office or a hospital.  Mine would probably die if he had a pinch.  Even well meaning people don't always get it.  These were neighbors of mine that are grandparents and they suggested this "cure" to me.  Funny, how the general public can cure food allergies for us all and the medical community seems to lag behind our friends and neighbors!    Anyway, yes, I have a teacher type that is a neighbor too and she grew up on a farm and she is convinced the reason my child had food allergies and her darlings did not is due to her farm upbringing and the fact that she let her kids get dirty.  Funny, my house is more cluttered than hers and our kids played in the same suburban dirt together. 

Thanks, Carol. We're in the process of updating those sections of the handout. Our graphic designer is on vacation this week.

thanks for the suggestion on alternate wording.

Lynda,

This is a great handout.  Thanks for your efforts and thank you EVEN MORE listening to some of the feedback here and considering some small changes.  

I do agree about taking out the "clean theory" info.  Folks who aren't dealing with this every day can easily be confused by this and blame the family of the the allergic child for being "too clean."  You get comments like "well, maybe you should have let your kid play in the dirt more when he was a baby."  If anyone saw the state of my house, they would never say that! 

I love, love, LOVE the part that says there is no cure for food allergies.  I'm sure we have all been subjected to comments from know it alls who tell us they read in a newspaper article that if you feed your kid "just a little" of their allergen, then he will get over it.  Uh yeah, it doesn't really work like that and it isn't something you do outside of a doctor's office or under a doctor's supervision.  

Re the paragraph on why other parents are being asked not to send certain foods to school, I have to admit that this is why I won't be sending this handout to my son's school -- as much as I REALLY want to.  While all the other info in the handout is great and explains everything -- including the fact that kids can die from their food allergies -- the way this section is worded gives the hostile anti-allergy person something to hang their hat on as to why we shouldn't all be inconvenienced just because of one kid's "feelings."  

Here is the current language from the handout:

"Children may be asked to not bring certain foods 

to school so other children with food allergies
can participate in school activities with their
classmates and not feel different or left out."

Here is how I would change it:

"Children may be asked not to bring certain foods to school so other children with food allergies can be safe and participate in school activities with their classmates."  

I think the "participate" language gets to the point of inclusion without leaving that as the ONLY reason to ask other families not to send certain foods to school.  

Of course, if it were left up to me and my typical "hit them over the head with a brick" approach, I would say something like "because school is not a restaurant and there is no legally protected right for your precious little kiddo to eat peanut butter wherever the heck he likes" or something like that.  But that probably wouldn't go over so well.  

Wow, you guys are great!  I had absolutely no help from my local school district.  I was basically told to home school and was even given a number of a good group that someone knew of etc.  I went that path and sometimes regret it.  Homeschooling is good, but works better in larger families.  My son often felt isolated even though we had lots of outside activities. (soccer, swim team, baseball, guitar)  I really feel like things are getting better for the younger ones coming up, but felt my son was more in the early stages where a lot of safety measures were not in place.  I am very glad things seem to be getting better and this group is way better than the only resource I had out there at the time. 

Amom and Lynda, you are onto it now.  That is so true Amom that I found myself laughing.  Yes, they see us wiping surfaces down and think we are just clean freaks and we probably made the environment too clean and thus we caused the food allergy.  We all know, we are just trying to keep our kids safe and not in the hospital.  Oh, to be among those that understand, even though I have crossed many of these hurdles a ways back is both refreshing and good therapy.  Yes, that hygiene theory is totally misunderstood!

Hi Cheryl!

Welcome to KFA

I wanted to add a note about "inclusion".  Usually around here when we're talking about inclusion, we mean that the allergen should be removed from the situation or the environment should be made safe for the child with food allergies so that they can be included in an activity. We are not meaning it to say that a kid with a milk allergy should have to sit and endure a milk-laden pizza party. That's not what we mean by "inclusive". From your post, I couldn't tell if we are talking about two different types of inclusion.

Using milk allergy as an example, a teacher shouldn't schedule a classroom pizza party because that excludes a child with milk allergy. Instead, non-food celebrations should be used.

In the handout above, I believe it is saying that other parents may be asked not to bring certain items to school because keeping kids with allergies INCLUDED and not segregated is important. It's important for kids with food allergies (socially and emotionally) but it's also important to teach other kids without food allergies to be compassionate. That's in addition to the fact that allergens can cause life-threatening reactions.

Anyway, I just wanted you to know that if you hang out on our support forums, you'll find that many of us do understand - we also have kids who have contact reactions and severe allergies to milk (and others) -- including my son.

KFA is a big proponent of making schools safer and more inclusive for kids with food allergies -  kids with food allergies shouldn't be separated from their class, shouldn't have to deal with unsafe parties in the classroom, etc. Here is a link that has more info -- KFA/AAFA was the only allergy organization who submitted a public comment to the USDA about making classrooms safer for those with food allergies. (Specifically it is for the Food Nutrition Service's Proposed Rule: Local School Wellness Policy Implementation under the Healthy, Hunger-Free Kids Act)   I'm copying a post from KFA's Facebook page:

We are looking out for children with food allergies in schools! We recently filed a formal comment on the federal government's proposal to improve wellness at school. Under the proposal for Local School Wellness Policy Implementation under the Healthy, Hunger-Free Kids Act, schools must develop wellness policies to address foods in schools. These polices will require schools to address snack foods for sale (like vending machines or fundraisers). The policies must also address foods in school for classroom parties, celebrations and incentives.

We want the USDA to develop a final rule that urges schools to address the needs of children with food allergy to keep the environment safer for those children.

Read AAFA and KFA's formal comment on proposed rule here:
http://www.regulations.gov/#!d...D=FNS-2014-0010-0489

 

If you click that link, you'll see a summary of the letter to the USDA and then there is a link to download the full comment/letter submitted by KFA/AAFA.

In KFA/AAFA's letter, the part I appreciate the most is this:

Snack foods, classroom party foods, school fundraisers and foods offered as rewards are often laden with common allergens such as peanuts, tree nuts, milk and eggs. These foods can pose a risk to
students with food allergies. The CDC's Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs emphasizes creating an environment that is as safe as possible from exposure to food allergens. These guidelines recommend that school policy for the classroom avoid the use of identified allergens in parties, holidays and celebrations, snacks or rewards. The guidelines also recommend that school events and
activities not exclude children with food allergies from events or extracurricular activities.

Again, I welcome you to KFA! You're not alone here.

Lynda,

We want our kids to be included, however, for some of our kids the inclusion is hard.  Mine has severe dairy allergies and asthma and so letting him be with other kids eating ice cream and pizza was impossible.  I might as well sat there and called 911, the minute he got there and was around all that.  The contact sensitivity or contact ingestion is VERY REAL and many don't get that point.  There is very little mention of that ANYWHERE, in any allergy articles, pamplets etc.  It seems to always say....your kid is fine....just make sure he has something safe to eat in his own little table etc.  That's fine, that is what we have had to do.  Our biggest hurdle has been kids eating the allergen foods around him and then wanting to high five him or shove their toy in his hand as they just wiped their ice cream residue on their shirt before handing it over.  These are the things that keep the highly contact sensitive kids from not being able to be included.  We don't wish to keep our kids from these events, but it is like pulling teeth to get others to understand that even though they didn't eat the item and sat alone with their safe foods....your kid coming over without washing hands first can still cause us to have to call 911 and grab the epi-pen.  Also, epi-pens are not a cure all either.  Sometimes if it isn't given early enough, deaths have been reported.  I know as I have read articles in the past and it gives me nightmares for weeks.  Some kids need multiple doses and everyone also needs to know that after an epi-pen is administered they MUST go to a hospital to be further evaluated as secondary reactions can still exist.  I apologize as you did a great job on the pamphlet, really, it's just for us with major issues....or mainly contact concerns....it just doesn't address all that. Nothing has and yours at least mentioned the contact part and I greatly appreciate that.  I just think if anything, a little more about the cross-contact and even setting safe foods aside or non allergy foods not sitting next to allergy foods would be helpful.  Maybe just a bit more of expanding.  I don't know, it is a great pamphlet and addressed a lot of things that help people who don't understand at all.  I guess my trouble is not so much with the pamphlet as the need to do more.  There are others like my son no doubt that feel they have to live in a bubble, because the contact thing is so hard to get across to the public.  It might be helpful to say....being too clean does not give one food allergies, but not washing before and after you eat could cause someone with food allergies to have a reaction due to the residue on your hands touching things that they might come into contact with after you.  I appreciate you and I apologize as I realize many with food allergies don't experience it to the same depths as my son.  I remember being almost the only one it seemed that had a food allergy kid that could react by contact.  Many people thought I was nuts.  I almost felt like I had to prove it to get them to believe me and well that was never an option.  So, we lost many friends or would be friends as no, we can't accept the offer to go to McDonalds and have a soda and then after your kids are done eating...let mine go play in those dirty playland tubes.  Not unless he was wearing gloves and he changed clothes afterwards.  I hope I am making it easy for others to understand the challenges of contact sensitive ones not always being able to be included....period.  Other activities have to be thought of and it does force many to live in a bubble.

I think what I am hearing here is that the hygiene theory statement in the handout is something that people without food allergies misunderstand, and therefore, it might be better to remove that from the handout altogether.

To clarify, it is a theory. It's not proven. And the theory relates to *developing* food allergies, not to outgrowing food allergies or managing food allergies. It has nothing to do with washing hands before or after eating to remove allergens.

I'm also sensing that you think that mentioning that the inclusion statement should be removed...not because it's wrong.  But because that concept can be polarizing to those who don't deal with food allergies. A good example is the way the media portrayed this headline.

So, I thank you for your comments. You are making good points. Let me see what I can do.