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,

 

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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.

Why are food allergy parents freaking out over the NIH guidelines?

 

On Thursday January 5, the news broke that the NIH was changing the guidelines regarding peanut introduction for children. I am not sure why this is such huge news as this is not new information. This is just another organization making the same recommendation that was based on the LEAP study, which was released in 2015. The study looked at early introduction of peanut in high risk infants. The results have been in the news often since the study and each time there is grumbling from within the food allergy community. With the most recent coverage, however, the grumbling has now become an outcry.
Honestly, I don’t understand the reaction. This is just a guideline for doctors to implement and it’s pretty specific. It talks about at what age to introduce, what to do if it’s an infant with eczema and egg allergy and more. The guidelines were based on a study done by medical doctors. This isn’t just a reversal of an idea; it’s based on a theory, and conclusion with evidence behind it to support it.
I can understand the outcry to some of the headlines that say “introduce early to prevent developing a peanut allergy”. Some of the headlines are totally misleading. As a multiple allergy mom, I will say I don’t think you can always prevent an allergy. Take a milk allergy, for example. Most infants are exposed to milk early on though formula, but yet milk is the most common allergy in children. Moreover, a recent study done showed early introduction of baked egg to infants also may prevent egg allergies from developing in high risk infants. That was not met with the same outcry that peanut was. Again, nothing is a 100%. This is just one more thing in a big world of theories.
I think these guidelines make some food allergy moms feel guilty, not so much from the study, but how the media is playing this. I get the feeling of guilt. It’s constantly put on us food allergy moms– from studies that say it was what you did and didn’t eat while pregnant, to C-sections causing food allergies. Somehow it always falls on the mom. This is no different; many followed the guidelines that we had at the time. We do the best we can with the information we have at the time. Personally, in my kids’ case I don’t think any of this would have mattered. They came out allergic and have a strong family history of allergic conditions. I see this as just another theory that might work for some.
Another concern parents are expressing is that people will now think kids with peanut allergies can eat peanuts. I am not sure how or why people would think that as the guidelines are VERY clear. This only looks at early introduction for infants! Neither the new guidelines nor the LEAP study talk about people who already have peanut allergies. This does not change anything for those who are already allergic. Claiming such a misinterpretation is a hard stretch to make as not one media report makes that claim, and clearly the study doesn’t say such things.
We food allergy parents must realize we live in a time when a lot of studies are coming out, which is a good thing! At the same time, we must realize that we can only do the best we can with the information available at the time, and not feel guilty about each new recommendation.

On Thursday January 5, the news broke that the NIH was changing the guidelines regarding peanut introduction for children. I am not sure why this is such huge news as this is not new information. This is just another organization making the same recommendation that was based on the LEAP study, which was released in 2015. The study looked at early introduction of peanut in high risk infants. The results have been in the news often since the study and each time there is grumbling from within the food allergy community. With the most recent coverage, however, the grumbling has now become an outcry.
Honestly, I don’t understand the reaction. This is just a guideline for doctors to implement and it’s pretty specific. It talks about at what age to introduce, what to do if it’s an infant with eczema and egg allergy and more. The guidelines were based on a study done by medical doctors. This isn’t just a reversal of an idea; it’s based on a theory, and conclusion with evidence behind it to support it.
I can understand the outcry to some of the headlines that say “introduce early to prevent developing a peanut allergy”. Some of the headlines are totally misleading. As a multiple allergy mom, I will say I don’t think you can always prevent an allergy. Take a milk allergy, for example. Most infants are exposed to milk early on though formula, but yet milk is the most common allergy in children. Moreover, a recent study done showed early introduction of baked egg to infants also may prevent egg allergies from developing in high risk infants. That was not met with the same outcry that peanut was. Again, nothing is a 100%. This is just one more thing in a big world of theories.
I think these guidelines make some food allergy moms feel guilty, not so much from the study, but how the media is playing this. I get the feeling of guilt. It’s constantly put on us food allergy moms– from studies that say it was what you did and didn’t eat while pregnant, to C-sections causing food allergies. Somehow it always falls on the mom. This is no different; many followed the guidelines that we had at the time. We do the best we can with the information we have at the time. Personally, in my kids’ case I don’t think any of this would have mattered. They came out allergic and have a strong family history of allergic conditions. I see this as just another theory that might work for some.
Another concern parents are expressing is that people will now think kids with peanut allergies can eat peanuts. I am not sure how or why people would think that as the guidelines are VERY clear. This only looks at early introduction for infants! Neither the new guidelines nor the LEAP study talk about people who already have peanut allergies. This does not change anything for those who are already allergic. Claiming such a misinterpretation is a hard stretch to make as not one media report makes that claim, and clearly the study doesn’t say such things.
We food allergy parents must realize we live in a time when a lot of studies are coming out, which is a good thing! At the same time, we must realize that we can only do the best we can with the information available at the time, and not feel guilty about each new recommendation.

Even Medical Professionals Aren’t Clear On EPI Use.

I have been seeing a lot of posts about Epi pen, use and when not to use. A lot of confusion and back and forth. I think this confusion is adding to the problem which I am not sure how to solve. But I can tell you though this post about my own battles with the use of Epi. Both of my boys are allergic to multiple items. When my youngest was a baby, he was confirmed allergic to dairy, egg, wheat, soy, peanut, tree nut, avocado, chicken, beef, peas, all legumes and more. My oldest son had dairy and egg. I wish I could say we avoided ER trips. This post is about how even anaphylaxis is misunderstood even in an emergency.

 

My youngest had his first reaction that I think was anaphylaxis when he was 9 months old. We were out of state and at a friend’s house.  We had not known he was allergic to beef and soy and gave him a meat product the week before which he was fine with, but this time he wasn’t. He vomited and was wheezing, we took him to the ER and the Doctors said he was having an asthma attack but nothing more so Benadryl and asthma meds were given, even though I debated them. That episode was mild compared to the next one.

 

We were on vacation, where I planned EVERY meal with the staff, even brought some of the food. Somehow my son got either a dirty glass or drank milk. It started out with hives all over. Only hives. So I gave him Benadryl, but it clearly got worse, I knew he had milk, we were driven to the ER. He was now getting the red lobster rash and coughing just as we entered the ER. I was in the ER so they would see also and they would epi. Right? Wrong….. They kept giving him more Benadryl, Pepcid IV. I kept saying EPI him, the ER staff at a VERY well-known hospital kept tell me that EPI is the drug of last course. As his oxygen level began to drop to 88, only then did they agree to epi him. Oh and during this time my other son was brought in to the ER also reacting to the dairy but Benadryl worked on him. My younger son required admission, but you could see the Epi work so fast. His color became normal, you could see the redness disappear. Then next anaphylactic reaction happened when he was at camp. He had a sorbate pop that had milk in it. He knew he had something with dairy as he said it didn’t feel right. So they called me, they gave him Benadryl and I told them to call 911. I got to camp and he seemed fine, we didn’t even have the label so it took me time to even find out what he ate. I decided given his history even though he seemed fine I wanted him to be taken to the ER. I had my epi in my hand, we got into the ambulance, 5 min from the hospital, he suddenly sneezed and then complained he breathing was bothering him I went to epi him the EMT would not let me, said he didn’t need it and instead started an asthma treatment which I screamed was a big mistake and that he need epi. He had no hives this time but the red rash was coming back and breathing was becoming affected. Thankfully the ER Immediate Epied him. I spoke to the EMTs after all this and they told me “epi is dangerous, Epi is last course, you only give epi if throat is closing up..”

 

We have had, unfortunately, other visits to the ER, for reactions with 2 symptoms and they didn’t Epi him. We had that happen both at home and in Florida. I made a few changes to my action plan after the camp one, I have on his action plan that even with no symptoms if we know he had dairy we epi him.

It’s not only parents who don’t know what to do. It’s ER doctors and even EMTs. This report was done showing that even doctors are misusing it http://www.medscape.com/viewarticle/838198 . I have personally had to fight doctors and nurses on what symptoms to EPI for. We need to remove a few myths.
Anaphylaxis is not this immediate throat swelling, can’t talk reaction, it can start out mild and slowly progress. Too many think as long as the person is talking or isn’t swollen like a balloon that it’s not anaphylaxis.
We also need to remove the idea that epi is dangerous. Doctors in the ER and those who are not allergists see Epi as a last option treatment.
We not only need to be educated parents on when and how to use EPI, but honestly, I think the biggest challenge is for education of those who are on the frontline during an anaphylactic emergency. These are the people we rely on to treat our kids. We need stronger education for the EMTs and the ER doctors. That said, they don’t do much better with asthma treatment. Many times, Asthmatics come in with attacks, they get treatments such and a nebulizer but, no steroids, no controller meds, so they end up back in the ER again a few hours or days later again,

How do we fix this? My suggestions.
I Suggest AAAAI or one of the other medical organizations do training for ER doctors. Doctors need CME classes (continuing medical education credits) require all ER doctors to do a workshop on anaphylaxis. I would also say it should become part of Pediatric rotation.
We also need to start a campaign to educate our emergency responders on when to use epi and how it is NOT dangerous as perceived.
Our jobs as parents is to make sure our kids ALWAYS have Epi with them! And keep the action plan in the case. I tell people often that if you think Epi is needed, just give and sort it out later. I work hard any chance I get to let others know what anaphylaxis looks like and not to be afraid of Epi. Let’s get clear info to the most important people who need it, the people who will be the Emergency responders

Injectable Epinephrine: An Epidemic of Misuse

Has the misuse of injectable epinephrine reached epidemic proportions? Dr Gary Stadtmauer explains why this problem has grown increasingly worrisome.

medscape.com

DRY POWDER INHALERS and MILK Allergies PART 2

Last night I posted a post that spoke to the concern of Dry Powered Inhalers like Advair. The reaction from the parent community was as I expected, thanking me for bringing this up and many sharing their own personal stories of issues. Yet  some doubted what I said in my post. So I am going to post here some of my sources and reports to back up my concern.

This post is out of Canada, but I use it a lot because for the most part the drugs are the same. Note this allergist explores the issue in lactose in pills vs dry powered inhalers. His recommendation is not to use.

http://www.aaia.ca/en/milk_proteins_and_allergy_medications.htm

My next piece of evidence is two medical journal reports

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4187530/ This was in 2014

This one was in 2004 http://www.jacionline.org/article/S0091-6749(03)02677-0/abstract

Allergic living was asked this question as well http://allergicliving.com/2013/11/07/do-asthma-inhalers-contain-milk-protein/

If this isn’t enough to question it, the drug company’s themselves have put a SERVERE cow milk allergy warning out.  From Advair’s own page

  • Do not use ADVAIR DISKUS if you have a severe allergy to milk proteins. Do not use ADVAIR DISKUS or ADVAIR HFA if you are allergic to any of the ingredients in the products. Ask your healthcare provider if you are not sure.

http://www.advair.com/

From  ASMANEX,

http://www.asmanex.com/asmanex/index.xhtml Do not take ASMANEX TWISTHALER if you have an allergy to milk proteins.

These are just two of the popular dry powered inhalers, others like Spiriva have the same warning.

While reactions maybe rare,enough have been reported to obviously make a cow milk allergy a contraindication. I am not saying people shouldn’t take them, but I do think asthmatics with a severe cow milk allergy should know that this is a real issue and that is well documented. At same time Doctors should know the risk is real. These drugs are available in versions which are safe . I think this issue needs more discussion and awareness. Patients and providers need to discuss the risk and benefits, but don’t ignore the issue .

THE REAL ISSUE IN THE FOOD ALLERGY COMMUNITY

This past week has been an active news week in the food allergy community, from a food allergy death, a new report that outlines the need for more info on all areas, to a mind-boggling opinion piece on the need for Epi pen and food allergies.

As the events played out, I used my group Positive Parenting with food allergies to open discussion on these issues.  What I found was many didn’t know asthma was a risk factor and played the most part in food allergy deaths. I found people were unsure of action plans. I took to Facebook live to do an asthma basic workshop, one that I do often as a Certified asthma educator. I also did a basic introduction to a food allergy action plan.  Yet many still have questions.

What we need as a community is not emphasis on the particular allergen as many like to do. If we focus only on nuts what good does that do for people who suffer from anaphylaxis from other foods, or insect bites or medications? Great so we know nuts cause anaphylaxis. So, does the other top 6 and more. Who then is going to think oh they ate some eggs, or milk or soy or even and apply and now they are wheezing and vomiting and think anaphylaxis?  Only nuts are deadly.

Putting attention on the food as the cause is not the solution. We need to raise the awareness of anaphylaxis itself and when to use epi for ALL!   Action plans for the most part are individualized as they should be, but we do need to make the message clear when to EPI for all.    I personally have been in the ER and even ER doctors don’t want to Epi.  We need to have a better awareness campaign for anaphylaxis in general like the 2-symptom rule. Many still wait till breathing is involved.  This is not only about educating parents but educating DRs as well.

In addition, many don’t know about asthma and its role in Fatal anaphylaxis. Asthma alone is deadly! add food allergies into the mix and you have a dangerous combination.  That is why on food allergy action plans It clearly says if asthma (higher risk if severe reaction) Yet many don’t know that. Another issue is many times people think it’s asthma and it’s really anaphylaxis, and not knowing the difference, they just take asthma inhaler A few deaths have happened for that reason.  Again, Providers need to have strong conversations with their patients who have asthma and food allergies. Parents need more guidance.

I have never been shy of speaking up, saying what others don’t I see a different picture, the current picture is about protecting some, not all.  At the end of the day anyone with an allergy has the same need. The need that people can spot anaphylaxis and know how to respond. I will keep speaking up and advocating for all at risk.