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.

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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,