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.

Thank you, Lisa.  Yes, I only found this website a year or so ago.  If I had found it sooner, a lot of things would of been easier.  I used FAAN, which is now FARE.  There didn't seem to be a lot of sites where us moms could chat, share ideas etc.  I know I have sounded crabby and frustrated on this site, but everyone has been really nice and supportive back.  I just had so many people not get the contact sensitive part with my son when he was smaller and even now to some extent.  I know what you mean, there is not much information out there on that subject and has been a huge hurdle for us.  He once had a kid waive a slice of pizza in front of his face as he said to my son....you can't have a reaction unless you eat it.  My son's friend who "got it", jumped in and helped save the day.  This was at a swim meet.  Luckily, this boy who was a year older helped talk for my son as my son tried to inch away from the pizza slice coming near his face.  I think my son froze out of fear that no matter what he did....he might end up with pizza on his face.  I then thanked this kid like there was no tomorrow for his help and we had to tell the coaches that this needed to be addressed a little bit more.  No food near my son and no threatening.  This boy was quite bright and just analytically didn't think it was possible as he only knew about eating foods giving friends at school a reaction etc.  I was terribly scared, but it was not this boy's fault for not knowing more about food allergies.  I think often the adults think it is bad or even dangerous to the food allergy child to say too much to the other kids, but I guess I believe knowledge is power.  I do get the risk of mean ones wishing to bully maybe if you single out the food allergic child and I think the reason they don't share more with the other kids.  However, in this case....if this child had known the risk....he would not have intentionally harmed my child...I do not believe.  I think more discussion about contact sensitivity through the membranes as a way of ingesting is something that should be addressed more.  I have all sorts of experiences that I am rambling on about.  Thanks again for everyone's support.  I haven't felt this supportive in years.  Seriously!!!!

Cheryl,

I know what you mean about wanting a handout to show people who doubt you that will get them to 'get it'.  

I wonder, what would you like to see in a handout that you haven't found here yet?

I have a child who is contact ingestion sensitive and had reactions to this type of exposure ranging from very minor to severe.  It has been difficult at times to get people to understand the risks of contact ingestion over the years and I collected things that talked about contact ingestion reactions to show the school.  Things that talked about this topic were pretty few and far between overall (not talking about here but in general from food allergy writers.)  

I like the KWFA materials and more and more have been produced over the years.  It is good to have feedback from people like you.  I hope things get easier for you.

Thanks, Kathy.

Oh, those middle school years are the hardest! My dd was steadily outgrowing her FA's before that, but then developed new ones during that time.

I encourage you to post over on the School Age Kids forum - there are many who have been through it/are going through it and can bounce ideas or frustrations.  It's hard!

Kathy,

Proud of your daughter.  Glad she is confident in herself enough to do that as well.  It's hard in the teenage years.  My son is not as confident and worries more about fitting in yet in his young teen years and why I am more worried about him.  They say it is those young teen years where they sometimes slip up with their safety as they let friends and fitting in, throw them off course sometimes with their safety. 

Yes, there is only so much to put into a 2 page hand-out.  Agreed.  The biggest problem is for the ones with the need for more restrictions....we almost need a severe food allergy/asthma 2 page hand-out extension.  I do agree though that if you try and tell people too much information....they just get overwhelmed and stare at you as if you have two heads.  : )  Have a great day....thanks for doing what you are doing.  My nerves have been rattled lately as we have had those teen growing pains going on in our house.  Teens go through a lot anyway and one with multiple food allergies is even harder.

Cheryl - don't feel bad about taking up comment space!  That's what it's for.....for everyone to be able to constructively voice their opinion to help and support others dealing w/ how to live w/ FA's. 

As you said, everyone's issues and restrictions are different, even kid to kid. There is no one size fits all and that makes it more difficult for those who need more stringent restrictions.  I'm watching my dd, who is a cabin leader for band camp, deal w/ some vaguely defined food allergy/intolerance issues for their cabin.  She's worried that some of the other cabin leaders are not going to take any FA's in their cabin seriously enough bc they just haven't lived it.  She sometimes feels like a killjoy when she points out that doing something will exclude someone or make a situation unsafe.  But she stands up for it anyway (and I couldn't be more proud!).

The key is education and that's what handouts like this are trying to do.  But there are limitations to what you can pack into a double sided handout.

Okay, just read how I am taking up so much room on this comment forum.  I hope I helped, not trying to be a problem, but also frustrated at times.  I am done commenting and will just sit back now and learn from the rest of you.  Thanks, in advance, for supporting me and my frustrations and mostly for letting me vent even if I don't do it the best way. 

Lynda,

I appreciate your response back.  I am sorry if I sorta beat up on the hands trying to help us deal.  I do agree that it is hard to have one hand out fit all, but it is always a help to have something.  I think it is hard with food allergies as even kids with food allergies differ from the next kid as far as severity and their own personal limits as to what keeps them safe.  It is hard to address all of us in one pamphlet.  I do appreciate your support and the fact there is a pamphlet.  However, my biggest problem stems by how others perceive us and our kids.  We are often viewed as the trouble maker parent, the helicopter parent or the annoying parent of the kid with food allergies as we worry about our kids safety.  I guess that is why I feel it is important to not minimize food allergies at all when discussing how important it is to keep our kids safe.  I guess I would rather be more difficult than to lose my child or anyone elses, just to appease some inconvenienced parent out there that insists on a cupcake or m&m's in a math counting or sorting project.  We need to not over scare the public, but as a food allergy/asthma community a we need a little more....this is so serious...message would be nice too.  Maybe just maybe they would start having more special classrooms to accommodate all these kids too as some can be included safely and mainstreamed, but many others have to homeschool or private school to keep their kids safe.  We are the victims sorta as we go without the extra income and stuff as we do what we need to do to keep our kids safe without much support sometimes and usually with more criticism by others.  There are shadows for kids with autism in schools and all sorts of help for kids with real obvious disabilities, but very little help for these kids with multiple or severe food allergies with the double whammy that asthma presents.  We need to be a louder voice.  The gluten free community seems to get more support even from the local grocery stores.  Try finding a lot of foods that are dairy free ......it's hard.  However, everything is now reinvented for the gluten free.  Why don't we have this same support?  Just saying.  I am sorry if I sound so negative, but it is a hard road out there for the ones that have multiple allergies and cannot even do a food challenge yet as the numbers are still too high. 

ReeseCat

Tell the teacher that the "clean theory" has NOT been proven as a cause for kids getting food allergies.  It's just one theory and to my knowledge it has not been proven.  I had a kindergarten teacher that told me, by state law they have to have the kids wash their hands prior to lunch or eating, but that afterwards was not a requirement, nor would they have the time to take that additional step for me.  I pleaded my case due to the contact sensitivity and shared surfaces in a kindergarten classroom and was not given much support by that school district.  I made the choice to homeschool after my son spent a week in intensive care fighting to live due to the school's helpfulness.  Remember, although it is important not to make unnecessary requirements or waves with the teacher, you know your child and circumstances best.  Be your childs best advocate and don't try to win the popularity contest as you can't be that type of parent usually with a kid with food allergies.  You will get the comments and the looks from others that don't "get it" and you just have to develop a thick skin to it all and if you have a faith, pray hard for wisdom in how to say things and how to make a positive difference.  I offered and furnished so many wet wipes over the years, just to get my child involved with some sorta activity and to make it safer.  As far a the clean theory, I had to keep hands of other kids clean in order for my son to be able to be near them again after they ate and to make sure I limited the exposure to allergens from residue left on hands.  You need to have a heart to heart with that teacher and remind her it is not a proven premise.  Surely, she has been taught the scientific method and you have to support your theories, not just promote them as fact unless proven.  Anyway, I am just here to support you and be sure that you do what is in your childs best interest.  I had to finally say am I going to be a pioneer for my kid and food allergies....or am I gonna sit back and let someone else call the shots and have my child possibly die as a result of them not "getting it".  I sure didn't want a plaque on some school lobby as a tribute to the kid that died from food allergies.  Be safe and trust that mom gut at all expense!  My advice after dealing with the people who will never get it for 14 years. 

I'm really appreciative of the comments! We want this to be a helpful resource.  I've gotten a few other comments already and will discuss with our medical advisory team about how to proceed.

No worries!  I figured it was bc I had posted a link on the forums to this blog post.  I'm not sure why your posts keep tripping the spam filter though.

Kathy, I typed your name and hit post and then realized it should have been Lynda (you are both so helpful on here that I think I got you confused). I edited it back to say Lynda, but your name was was there for a few minutes. I'm sorry for making it confusing! 

Was that directed to me??  I actually didn't work on that particular handout, but yes a lot of work goes into resources like this.  And it's always a difficult balancing act since dealing w/ food allergies is a wide spectrum.  If you have concerns or suggestions, you can e-mail them directly to Lynda at the address she provided above.  I'm sorry to hear it did not fit your particular needs and you decided not to give it to the teacher.  Thank for your feedback though as it is always good to get a sense of what our members need.

That handout is great - thank you!!  The only thing I didn't like about it was the "clean" theory as my son's teacher is constantly telling me that this is the reason he has food allergies.  annoys me to no end! I would have liked the article not to include any theories but besides that, I love it and plan to use it.

Hi Cheryl,

I'm really sorry you have had so many bad experiences and trust me, I understand. My son has food allergies - had multiple food allergies as a little kid, is still anaphylactic to his allergens. He had anaphylaxis at school in first grade. I get it, I really do.

Did you see page 2 of this handout? It specifically asks the question, "Can kids die from food allergies?" and it's answered.  the very last question on page 2 gives ways for people without food allergies to help children who have food allergies.  It addresses issues of cross contact.

We've always strived to emphasize the need for a community of support to keep children with food allergies healthy, safe and included. And you are right, we must provide a safe environment for children to be included. I would be the first person to agree with you on that point.

Safety is paramount but we don't want kids with food allergies to deal with emotional and social impact of exclusion. That was the intention of the answer to that question.

This handout was not designed to cover everything. It's for people who have no knowledge of food allergies to get an overview of key points.  It's hard to cover everything in two pages or repeat information more than once.  

If you still have concerns, please contact me at lmitchell@kidswithfoodallergies.org and give me an idea of what you have in mind what it should say.  I'd like to hear from you.

Lynda

Page 2 at the top answers the question, "can children die due to a food allergy reaction."

inclusion on is an important concept to educate people on as well.