Help To Raise Awareness!

May is Asthma and Allergies awareness month and because of that ,I am writing to you the media, as a mom of 2 boys who are anaphylactic to dairy and have other food allergies.  I am also a food allergy advocate and certified asthma educator.  
The topic of food allergies has been well covered in the press.  What has not been covered is the bizarre caste system that has emerged within the food allergy world .On the top of the pyramid, we have peanut allergies.   By now, every school, camp, etc has been declared peanut free and no responsible parent would dare send their child anywhere with a peanut butter sandwich.  Lower down, but still taken seriously, are the tree nut allergies.  And then we have all of the other food allergies – Eggs, dairy, soy, shellfish, wheat, fish.   Those who suffer from the non-nut allergies face 2 struggles.  The first is the same as everyone, getting recognition and accommodation of their food allergy.  The second struggle is to have their non-nut allergies taken as serious as nut allergies.  
All of this seems to be driven by this completely false belief that nut allergies are more severe than others.  How this widespread belief came about is one of the big mysteries I cannot get to the bottom of.  Nuts are not even the most common allergen – Dairy is.  And the truth is, any allergen can cause anaphylaxis .   You can’t imagine​ the struggle my kids face trying to get their allergy taken as seriously as nut allergies.  Essentially, nobody takes other allergens as seriously, from schools to birthday parties, etc.  They are the second-class citizens of the food allergy world. 

I have so much more to say on this topic.  I hope you find it interesting.  Given that May is National Asthma and Allergy Awareness Month (http://www.aafa.org/page/asthma-and-allergy-awareness-month.aspx), this could be something to explore.



Sincerely,
Harriet
@allallergiesmatter on twitter.
Or @harriet75 on twitter

The New Food Allergy community.

I keep seeing blog posts talking about the need for the food allergy community to stick together and support each other. Many posts have talked about “scaffolding” and if you don’t agree with something, don’t comment, and keep on “scrolling”–we need to present a “united front”. A recent post talked about how we are all in this together and we need to hold each other’s hands, and that again we should not be pointing out the individual struggles and disparities within the food allergy community.

As many of you know, I created a Facebook group called “Positive Parenting with Food Allergies” about a year and a half ago when it became clear to me that speaking up in defense of people with the other top 8 food allergens that didn’t happen to be nuts and how other allergens are not taken as seriously even by a fellow food allergy parents.  I constantly get messages from people telling me how they’ve spoken up in other groups and they’re afraid or they have been banned or they have been shamed for saying “Hey wait a second, my kid needs to be protected too” or “Your allergies are no worse than mine and they’re not being treated equally”.

We also all know that about a month ago, some people in the food allergy community tried to make a big deal about the fact that I wrote about how all allergies matter for a blog post on a peanut board supported site. The fact is my goal was to educate about our food allergies and not just peanuts ,but a small handful of bloggers tried to make that into a big bad thing. I received no compensation, except the opportunity to raise awareness that other food allergies are equally as dangerous.

So I got to thinking, when I and other old time food allergy parents started out on this food allergy journey over 10 years ago, The world wasn’t like this! Why has this happened? Why do we feel that we need other people to hold our hand through this? Why do we need constant validation? Why do we need to be told what we should be doing or what we shouldn’t be doing?  Why are people posting pictures or reactions asking what to do? This was not there 10 years ago.
10 years ago we didn’t have 504 plans as we do today or if we did they were very limited. We didn’t have people freaking out over the struggles of daily life. We did not have people running on Facebook asking what should I do about this? And “I doubt my doctor” and “I don’t like the advice I was given” and “I need a peanut-free everything environment.” None of this existed.

Talking to other long time food allergy parents, we all have said “Wow! We didn’t have any of this and our kids are totally fine! We were our children’s advocate. We spoke to our doctors. We read books. We found what worked and didn’t work for our kids. We had communication with the school. We spoke up when there was an issue, but also knew we couldn’t ban things. We did not rely on information from other people that we never met to tell us what to do, or what we shouldn’t do.”

Now, people say to me, “but your group is a support group.” Well I never really saw Positive Parenting with Food Allergies as a support group but I did see it as it is a place for us to share our experiences. To say: this is what I’ve gone through, this may be what you’re seeing, and it’s OK to feel this way. Many of us did not see the need for this to be handholding as many in the food allergy community would like. Many seem to have a need to be validated.

The big concern I have seeing all these posts is the big question where does the personal responsibility aspect come into play? 10 years ago it was nobody’s responsibility but my own to advocate for my child. I did not expect the world to become free of both my boys’ multiple food allergens. I knew about limitations. I know how to make him safe as possible, but it was my job to make sure he had safe food at birthday parties and make sure that teachers were trained and knew how and when to give the Epi pen.  It was my responsibility to communicate the needs of my child. It was my responsibility to educate the staff about food allergies and that was fine. It was my responsibility to educate my kids not to take food from anyone else but me. It was my responsibility to teach my children how to read labels early on. It was my responsibility to educate my children to know that their environment would never be allergy free. When you have multiple allergens, there’s no way that you can set up a situation where we’re going to have a free everything and you will be totally safe. It was my responsibility with my kids. We go on trips, and to make sure that the trips were safe enough, if that meant that I have to cook and send up meals, or if I had to call the place in advance, that was my job—I did not consider it anybody else’s job. I did not feel discriminated against.

It just seems to me that the food allergy community has become a lot of complaining and saying the world is against us vs taking control and doing what many of us did, and make the world work for us and figure out how, instead of saying “I’m being discriminated against”, “my rights are being violated” or creating false fear. Many of us who have been doing this a long, long time didn’t have any of these things and our kids were totally fine. In fact, some might be able to manage their allergens better because of it.

As social media has become part of our daily lives I’m afraid we’ve lost a sense of controlling our own daily lives.  We are now relying on social media to tell us things on how we should proceed with food allergies.  We are now relying on social media to tell us things on how we should proceed with food allergies. We must remember, however, that the people on social media do not know the needs of your individual child, do not know your school system, and they do not know your doctor. What one child needs may not be applied to all children with food allergies, and we must remember that.
Perhaps that is why there is this sort of control going on and that anybody who speaks up against certain things in the food allergy community are shot down. It’s not just me. I know of others because if more than one voice speaks up and says “wait a second”, it causes people to think and maybe even do some research. It’s very easy to go by just what people are saying but please, don’t go by what these food allergy groups or food allergy blogs or even some companies are saying. Be your own person! Do your own research, talk to YOUR doctor about your needs.  Teach your children early that they are in control and how to take that control.  And yes, keep speaking up if you see something you don’t agree with.

Update

I have been silent since my last blog post which was my initial response to SnackSafely’s attack on me. I took time to digest it all, and between rehearsal for a show I am in, and other matters that came up, I didn’t want to rush my thoughts. I do feel I need to clear the air on my side, because I can’t just let it be. It was too vicious, and yet again tells me so much about the food allergy world.
One of the things that is so troubling about the ordeal is that not only was I verbally attacked by SnackSafely but I also was mistreated by multiple bloggers who support SnackSafely. What is my crime to deserve such treatment? Is it because I don’t subscribe to the peanut being the one allergen to fear? That I don’t believe that schools should be nut free? Or that I believe that other food allergies are just as life threatening as peanuts? It’s true, I do have a different view on these subjects. Could it be that is what has them so very angry?
Truly, I wish no harm to SnackSafely, but I do have very valid concerns and I am only asking that they simply address them, nothing more. After all, the company is in a position to make a very positive difference to so many in the food allergy community. Instead, this company, chose to blocked me and anyone who disagrees with them. I find that disturbing. Shouldn’t a food allergy focused company want to hear how they can serve the food allergy community better? Why wouldn’t they?
The fact is, I was slandered by SnackSafely, over a 3 day period, in a very public forum–Twitter–for the whole world to see. When one person asked what proof SnackSafely had for the things they accused me of, they said they didn’t need proof. The head of the peanut board actually came on Twitter and stated that all that was said about me was not true. Still, SnackSafely refused to apologize or remove tweets. Let me add that I had been blocked by SnackSafely for months, ever since the Kellogg’s debacle. Then suddenly, the other day,, I was unblocked by them and a few of their friends, and just as suddenly, I was blocked again, now unable to see their tweets or to defend myself to them. It could not possibly have been a fluke since a blogger–close to SnackSafely–direct messaged me out of the blue just two days prior to this incident, to ask if I ever wrote for the peanut board. Coincidence? I think not.
I even tried to take the high road and sent SnackSafely an email, asking to work together for ALL people with food allergies, but first I needed an apology. Not an unreasonable request considering what had transpired on Twitter. I got a reply–would I be interested in a phone call? I wrote back that I would not consider a phone call until I receive an apology, and that the ball was in their court. I could not talk to someone who treated me so badly. Silence. And so, the tweets are still there, no acknowledgment of wrongdoing of any kind, and amazingly, some people think this behavior is acceptable. It is NOT.
Let me make it very clear what my issues are. There is no such thing as a “safe snack” list. I don’t like that the Safe Snack Guide by SnackSafely is ONLY a nut free list, which now just happens to have a few top 8 items on it. The fact is, it’s really still a nut free list and SnackSafely openly advocates for schools to go nut free but does nothing to raise awareness of other food allergies or the fact that every food allergy is equally dangerous. Anaphylaxis is anaphylaxism no matter which food allergy causes it. You can view my open letter to SnackSafely and see the direct quotes from their own web site. I am sorry to say, Snacksafely still has not addressed my concerns that I raised in my open letter.
I don’t want kids put in danger. The current setup with the Safe Snack Guide does put kids in danger, and my concern with the new school sample program is that it was again really nut focused. How will people without food allergy knowledge know that Skeeter Snacks are not safe for all with top 8 allergens when it’s just a nut free snack, and it actually contains 4 of the top 8 allergens? There has been more than one report of someone having anaphylaxis from Skeeter Snacks because they thought it was an allergy friendly snack for the top-8.
We must be very careful in the message we give, because not everyone is familiar with food allergies. The Safe Snack Guide has Pirate’s Booty listed as a safe snack, but that snack is not safe for a classroom with the dairy allergy. How would a staff member unfamiliar with food allergies know that? Ultimately, this is still a nut free list, and having the other allergens on it makes it confusing to others. That is my issue and I think that is a reasonable concern. So it seems because I am speaking out and looking out for the safety and awareness of all other allergens, I was slandered and attacked publicly. Is this really what the online food allergy world has become? My concerns are about the safety of my children and other children with food allergies. Isn’t that an issue of great importance to all parents of children with food allergies? Don’t we all just want our kids to be safe? Is it too much to ask, especially for a food allergy business and food allergy bloggers, that we at least listen to each other with respect? All allergies matter. Let’s show it in our actions, not just in words. No food or snack lists truly can be labeled “safe”…not with over 100 foods causing allergic reactions.

My Response

I feel the need to defend myself because  a  food allergy business went on a tirade and took to Twitter, a very public forum, and spread total lies about me in an attempt to make me look bad.  EVERY single word is untrue!

I am not the mouthpiece of ANY organization or group except for All Allergies Matter, which is me and my positive parenting group.

I wrote two blog posts for the peanut allergy facts blog, which many food allergy advocates write for, and I never received a dime for those posts. I wrote 2 posts on ALL allergies as I always do.

http://peanutallergyfacts.org/blog/new-year-s-resolution-being-mindful-of-food-allergieshttp://peanutallergyfacts.org/blog/food-allergy-means-more-than-just-peanuts

All Allergies Matter is not receiving funding at this time.  Contrary to what the business stated on Twitter, I don’t get paid for my blog either, no clickbait, nothing! It’s a free wordpress page.

I am being bullied for speaking up, and saying that we need to start educating that all food allergies are dangerous and need to be handled equally. Nobody is paying me to say this.  I am speaking up because I need to, for my kids and kids like them. I have to raise the awareness because  this is MY life,  This is many other people’s lives too. I am sorry peanuts are not the only life threatening food allergy.  We need to stop thinking it is!  I would scream this message from the roof tops if I could. I will write for any blog that will give me space Just so this message is heard.

So here is a food allergy business with backers, bullying a food allergy mom for speaking up and educating.  I will not be silent. I will keep educating and I will keep helping others who are in the same situation.  Our kids’ safety depends on it.

 

 

Open Letter

This week, I read about Snack Safely’s  new program with  Enjoy Life Foods, WOW Butter and Skeeter Snacks. As with your Safe Snack Guide, I believe you have only the best of intentions, albeit misguided, but feel it potentially creates more problems.

This new program is promoted as being helpful in raising awareness of food allergies and offering alternatives.  It’s not though, really.  I am actually disappointed by the new program for a few reasons. Snack Safely has never been known for educating schools about any allergens other than peanuts and nuts. This is a serious problem that cannot be overlooked.  In addition, Snack Safely recently announced that ” many” of the items in their guide are also free from the top 8 allergens. Let’s be clear–no products have been added to the Guide for the other allergens . The Safe Snack Guide fundamentally is still a peanut and nut free list. The only difference is that now the Guide points out nut free items that also are top 8 free. No new top 8 free foods have been included, so it just does not seem plausible that Snack Safely has begun to consider top 8 free snacks the same way it considers peanut and nut free snacks.

I love Enjoy Life Foods, and am a bit disappointed in their participation in this new program.  I use Enjoy Life as my go-to snack for the 100 kids with food allergies I manage at camp. Yet, while Enjoy Life covers most kids with food allergies, it does not cover all my allergy kids. I have kids that are allergic to even Enjoy Life products.  Skeeter Snacks is particularly limited, as it is only peanut and nut free.  They contain  wheat, soy, eggs and milk. That’s 4 of top 8 allergens–not safe for many kids with food allergies.  Wowbutter is made of soy; what about the soy allergy kids?  And that is where my problem with all this starts.  Nothing is truly safe for everyone, and while Snack Safely bears this disclaimer all over, it means nothing!

 “Note: These products may not be suitable for every child with food allergies. Always consult with the parent or caregiver before giving any food to a child with food allergies.”

All too often school staff and nurses look for “safe snack” lists to make their job a bit easier. These are  people who are not always educated in food allergies, and may think as long as nuts are not present, then they are in the clear.  I myself have had to educate not 1, but 3 school nurses that the “Safe Snack Guide” is not safe for all children with top 8 food allergies. Many believed it covered all top 8, and were using it to create safe snack lists for their school based on this! Imagine their surprise when I pointed it out.  Safe snack lists in general forget about kids with other food allergies outside of nuts.  This only adds to the misconception. For your information, 90% of the Snack Safely guide is not safe for my kids, and if their school went by this list, they would be excluded.

Let’s be honest, this program is not benefitting the allergy kids. It’s a marketing tool, plain and simple. Parents of allergic kids already know what products to buy and what their kids like to eat. Moreover, I don’t think kids with other food allergies are truly even on your radar. It seems more like your focus is on nut allergies since that is what your own kids have, and if a snack happens to also be top 8 free then great! But if not, oh well! You even say as much  on your web site.

Look at these quotes directly from your site

“We publish the Safe Snack Guide, the de facto standard snack list used by thousands of schools and tens of thousands of parents nationwide to help keep common allergens such as peanuts and tree nuts out of the classroom and the home.”
“The Safe Snack Guide is intended as an aid for parents, teachers, school nurses and administrators, club organizers… anyone responsible for people with allergies to peanuts, tree nuts, or eggs in an environment where food may be consumed in their presence”

“Everything a teacher, school nurse, principal or PTA group needs to implement a successful nut-free classroom policy”

“Many schools are implementing allergen exclusion policies to accommodate their children with food allergies and help protect them from anaphylaxis. Here is a summary of resources for teachers, school nurses, principals and PTA associations to help ease the way:Safe Snack Guide – Our extensive list of commonly available snacks free of peanuts, tree nuts and eggs. Well researched and frequently updated, the Guide provides parents many snack options that comply with a nut-free policy”

So I ask you this, as a mom of  two and as someone who oversees over 100 kids with food allergies, many of them with food allergies other than nuts. How are you helping them? How are you advocating for them?  As someone who works with kids, teachers, school nurses and PTA groups and being on one myself, I can say you don’t. And your “education” efforts have made my life–as a mom of kids with non-peanut allergies–and the lives of many other parents of kids with multiple food allergies more difficult.

As one parent to another, and in the spirit of trying to help our children, I would like offer some suggestions how we can help ALL children with food allergies, even non top 8. I hope you will incorporate these suggestions into Snack Safely’s work.

  • Let’s educate about hand washing. Hand washing has been found more effective than bans in preventing allergic reactions.
  • Let’s educate on NEVER sharing food.
  • Let’s educate that ANY food allergy can cause anaphylaxis and as such, all food allergies should be considered equally dangerous, even non-peanut and nut allergies.
  • Let’s educate schools that there is no such thing as a “safe snack guide”, and that lists should be made based on the need of the class and all the allergens present in the class, and be made by the PARENTS in that class of the allergic children.
  • Let’s educate on the signs and symptoms of anaphylaxis and when to administer epinephrine.

It is my hope that one day, Snack Safely and others will understand that peanut and nut allergies are not the only life threatening food allergies in American classrooms today. This misperception is endangering children every day. We owe it to those children to get our facts right. We need to take all food allergies seriously, recognize all can cause anaphylaxis,  and create food allergy education programs and policies that keep all our children safe and included.

Thanks,

 

A Question?

For weeks now I have been watching the media coverage on the airline complaint made by Mary Vargas and FARE.  Please take note that this complaint was made  supposedly with All food allergy surffers in mind. To date I have not seen that message get across.  All the media attention and comments are about peanut  allergies.

So what about those of us with other allergies?  No awareness raised, no addressing the issue that we have people who WILL potentially have the same type  reaction if they to come in contact with their allergen

I guess we don’t matter, I guess when I ask for pre boarding due to my kids dairy, Seseme, tree nut, and fish allergy and asthma. I will still get blank stares.   I don’t want my kids sitting  directly next to someone eating Doritos or Cheetos for a flight.. honestly my kids are seeing this coverage and they are saying what about us..

The truth is  I also have severe asthma  and FYI my parents never took me anywhere because of it my first flight was when I was 23. But what about the person who is also allergic to dogs and cats which are now allowed on? 0r fragrance allergies?

How is this coverage helping the 11.5 million with food allergies other then nuts?

So my question is what will all this do for those of us without peanut allergies? And what do we do if only nuts are accommodated?

 

 

 

 

 

 

 

Living In The World With 2nd Class Food Allergies.

This week has been filled with LOTS of food allergy related news, between the new guidelines of early introduction of peanuts, to FARE’s press release on a complaint filed against American Airlines for not allowing pre-boarding,to CVS offering generic Adrenalclick.   The common factor in all these stories is how the media played this. The only allergy mentioned in all- the news stories was peanut allergy. Epi-pen is needed for peanut allergies, AA discriminating against people with peanut allergies. Peanut, peanut,peanut.

There are 170 foods that can cause anaphylaxis. In the United States we have 8 top foods that cause 90% of food allergies.  Even if you have a top 8 though, unless it’s peanuts, odds are nobody knows the seriousness of the allergy or that it can be just as deadly as a peanut.  Even tree nut allergies are often not taken as seriously. For example, most airlines have peanut policies but they do not have tree nut policies, and they don’t have any policy for any other allergen either.

While living with any food allergy sucks, life with an allergy outside nuts is much harder. Yes, I know this may anger some but let me explain. When someone has an allergy to milk, egg, soy, fish, wheat, shellfish all of which are part of the top 8 , you learn pretty fast that the world will not be free from your allergens. Nobody is making a milk free school. You walk around daily seeing people eating your allergen.  People know nothing about your allergies and often tell you to take a lactaid pill to eat something with milk, or they say or “you’re lucky you don’t have a peanut allergy” , “people only die from peanut allergies”. FALSE!  Sadly, this is not true.  How quickly we all forget how Sabrina Shannon died not from peanuts, but from a utensil cross contaminated with dairy.  Safe snack lists often are only nut free and people with other food allergies are forgotten and not included. Often schools are “nut free” but do not go to great lengths for other allergens.

The risk is equal for ALL allergens. Cooking or steaming or powdered milk can cause reactions, as can egg and fish.  Powdered cheese products like Doritos and  Pirate’s Booty can cause reactions. Even going to a local coffee shop can cause an issue. When looking for food, it’s much harder to eat out. Most fryers and grills are using milk, egg, soy, and fish.  People with these allergies have very limited options.

There also people who are allergic to some popular foods that are not on the top 8.  Sesame, corn or  mustard for example.  Not only are these allergies not taken as seriously by many, by law they also do not need to be declared on food labels.  People sometimes have to go to great lengths to find out if the word “spices” means sesame or mustard.  Some people even are allergic to carrots and apples and need epi pens for that as well.

I am angry. I am frustrated. As a mom of kids with milk, tree nuts, sesame, fish and beef allergies, I feel like I am batting my head against a brick wall. I know others feel this way also. Why does every food allergy story have to be about peanuts? I have seen my kids need an Epi-pen from a tiny bit of dairy, yet no one talks about the dangers of other foods.  I blame many in the food allergy community for promoting the current message.   Honestly, we need awareness now that other foods are just as allergic, not more stories adding peanut to the message. I can tell you even within the food allergy community, there is refusal to understand that ALL allergies are equal.  We need to educate, and we also need to stop promoting false myths. The current thought process and message is putting MANY other allergic individuals at risk.  All allergies matter! To the person who is allergic, it makes no difference if it’s a peanut, or a banana, the reaction will be the same.   I am begging my fellow food allergy advocates, the media, and other food allergy sufferers to start making the conversation about ALL foods not just one.