All posts by Nicole Smith

Food Allergy Awareness Week 2017

Food Allergy Awareness Week is May 14-20 this year. Several of the food allergy non-profit groups have resources and suggestions for you to increase food allergy education and awareness in your community.

FARE (Food Allergy Research and Education) has resources and links here. FAACT (Food Allergy & Anaphylaxis Connection Team) has ideas of activities here. Kids with Food Allergies has social media awareness tools here. Turn It Teal has a listing, and an ability for you to suggest a location, of all buildings lit in teal (the food allergy awareness color) during the week here.

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There has been a big push to get elected officials to declare the week with a proclamation. I’ve always felt that unless this is followed by specific education, and awareness information disseminated to the public about food allergies, or a food allergy awareness event, there is little gain for the food allergy community with a piece of paper.

When my son was in school at a public K-12 school district, our Food Allergy Task Force would create a press release for each of the 30 schools in the district (elementary, middle and high school) detailing information about food allergies – how many children have food allergies, what the symptoms of an allergic reaction are, and how to have fun without food! These public service announcements were very valuable and generated discussions for families, teachers and administrators. This Task Force is celebrating 10 years of existence this spring, and continues to create more food allergy awareness throughout the school year.

For May 14-20 of this year, create some food allergy awareness in your family, with friends and/or in your community! It may save a life.

AllerTrain Allergy Training for Chefs

Betsy Craig and her husband, Rocky, started AllerTrain, an ANSI accredited food allergy and gluten-free training course offered by MenuTrinfo (which, according to their website is “dedicated to bettering the food-service industry by providing two major services: Certified Nutritionals and food allergy/ gluten-free identification and education”.) The course teaches foodservice professionals about the top foods causing food allergies, proper protocol for preparing food so to avoid cross-contact and to how better serve diners with special dietary needs. This will help restaurants avoid food allergy related incidents, and prepare them to handle such incidents, should they occur.

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Where did the idea of AllerTrain originate and how long have you been in business?

AllerTrain was born out of my original business MenuTrinfo (mash-up of the words menu – nutrition  – information).  Once we set up our company nutritional software for industry in 2010 my husband realized he could tag allergens in menu items for the restaurants we provide nutritional service for.  I knew that in order for it to help those with food allergies, and this new movement of gluten-free, that training needed to be in place to make a difference.  Having food allergy friendly food was only step one in keeping diners safe and meeting special dietary needs.

I reached out to others in the food safety, restaurant, food nutrition, and training space to begin to build a training program I called AllerTrain.  This was October 2010.

Can you explain AllerSTAR and MenuTrinfo?

AllerSTAR takes learning objectives taught in the AllerTrain educational programs and makes them singular training points taught through a monthly poster and toolkit program.  This is to enhance the learning in AllerTrain and also to keep the topics of food allergies, gluten free and proper standard operating procedures on top of mind.  This poster training program is for all employed at a restaurant or college who does the month AllerSTAR program. Teach, test and sign off on the learning object creates ownership with the industry and staff at any food location that takes part in AllerSTAR.

I’ve seen that you’re training many chefs in colleges who have Sodexo. What other groups are you training?

Sodexo was a clear, eager and super helpful early adopter partner for AllerTrain but we have many folks who have trained within AllerTrain courses.  Folks at almost all Ivy League schools, key brands like Eat’n Park in PA, Glory Days Grill in the New England area, a part division of Panera Bread in TN, WV and VA, Cattlemen’s Steakhouse in CA, universities and colleges throughout the US (in the FARE college training program and out).  College food service management companies like Parkhurst, Culinart, Aramark, and Chartwells.  Many different private schools, a number of public K-12 districts, hundreds of schools in Texas, Training centers throughout the country, Amtrak, over 300 health officials in Virginia, over 75 food service professionals that work within the federal prison system, Food service managers at airports in a number of major cities, the head of F&B for the Olympics, and the list goes on and on…..

Can you tell us what is involved with training a chef at a restaurant and the staff?

A combination of training of the disease of food allergies, Celiac and intolerances, best practices for front and back of house, policy and procedure assistance and emergency protocol.   Ongoing training is also a major key to keeping folks trained and confident.

Does your training cover cross contact?

Yes there is a great deal of focus on cross contact.  It is key to successful food prep, cooking, delivery and satisfaction.

Do you suggest that restaurants and dining halls use separately colored utensils in the preparation of meals for food allergy and/or gluten free customers?

We fully and completely promote this concept and encourage the use of separate colors for food allergies and Gluten-free.  We use the same color for both of these special dietary needs, as the method to keep people safe is the same.  That is also why we teach both in AllerTrain. The teaching and tools are the same and desperately needed for success.

Do you provide ongoing training for a site and their employees? Or is it just a one time training?

Ongoing training is addressed through the AllerSTAR program.  Also many locations and universities have their staff go through AllerTrain once a year despite the fact the certificate is good for 5 years.  They want to keep the information top of mind yearly.

Thank you so much Betsy for creating this wonderful program to keep those with food allergy safe when dining out or in college!

 

Why Betsy DeVos’ Confirmation is Personal to this Food Allergy Mom

If you’re worried that this is going to be a political tirade – never fear. Instead, I want to share with you our family’s experience about the value of the Individuals with Disability Education Act (IDEA), Section 504 of the Rehabilitation Act, and the Americans with Disability Act on my son’s education.

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When my son, Morgan, started kindergarten in the Fall of 2001, we had already experienced every private preschool in our city denying my son entry. There was minimal food allergy awareness at that time, and no one had heard of a child reacting to touching peanuts! Preschool teachers and administrators were afraid to learn how to administer the EpiPen and didn’t want to take on the liability OR they didn’t want to provide an allergen free classroom. Therefore, they said they didn’t want him as a student.

This was heartbreaking to my husband and I. We had no idea what it felt like to be denied schooling for our child. I had big thoughts about filing a lawsuit against the various preschools, however I soon realized that I didn’t want to fight for Morgan to be admitted to a school that didn’t want to take proper care of him.

I continued my search, and my son finally landed in a public preschool within our school district, where the teachers were more than willing to provide an allergen-free classroom and to learn how to administer the EpiPen should that be needed. Thankfully, he had a wonderful experience, and never had an allergic reaction since they removed all of his allergens (peanuts, tree nuts, sesame, fish and shellfish) from the classroom.

Once he started kindergarten, the elementary school counselor had the foresight to put Morgan on a 504 Plan.  She had already met with the school district 504 Coordinator prior to the start of the school year, and had received approval. This provided accommodations for him to have equal access to the curriculum. The Plan was pages long outlining classroom safety, EpiPen training, field trips, playground monitoring, and stipulations for all the other classrooms he would visit in a school day being allergen-free in addition to many other items.

This was long before the ADA Amendments Act of 2008 when eating was added as a “major life activity”, so the school district was really stepping out to put Morgan on a 504 Plan, (which he kept from kindergarten through 12th grade). I know many of you reading this are likely still fighting for all the 504 accommodations you believe your child needs. We were completely blessed with a school district who not only understood the law, but also were child-centered and wanted to create a safe, educational environment in which every child can learn.

Parents of other children in the classroom (and the school!) weren’t happy about the accommodations, especially if it meant that their child couldn’t eat a Snickers bar for snack. The school Principal kept a strong backbone, and stood up for Morgan (and me!) more times than I can count. She knew the law, and she knew what was right and what was necessary for Morgan to be in school safely.

If you’ve been reading my blog (and newsletter before that), you know that we had many ups and downs through the years battling other parents bullying and ignorant teachers. Yet overall, our experience was good, because 1) Morgan never did experience an allergic reaction and 2) if there was ever a question that the 504 Plan wasn’t being followed, a Team meeting was immediately called and the Plan prevailed.

During Morgan’ senior year of high school, he applied for and received the Boettcher Scholarship, a 4-year, full ride scholarship (available only to Colorado high school seniors) to any Colorado college of his choice. Only 40 scholarships were given his graduation year, which makes it the biggest honor of any Colorado senior. This is what equal access to the curriculum can yield from a Free Appropriate Public Education.

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With all of our experience as a backdrop, when I read about the confirmation of Betsy DeVos as the Secretary for the Department of Education, after a hearing in which she, at best, is confused about the IDEA, and at worst, doesn’t realize it is a Federal law, I think of my son. What would have happened to his education had he not been admitted to an elementary school because of his food allergies? Or if he had been admitted, but had to worry every day about allergens in his classroom? You can’t learn in those situations. And it’s why we food allergy parents need to ensure that the IDEA remains in the forefront of Ms. DeVos’ mind as she seeks to revamp the entire public education system.

 

 

 

 

Colorado’s Allergen-Free Bakes

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I’d like to introduce you to Steve & Angie of Allergen-Free Bakes, a Colorado based company that creates wonderful cakes, pies, bundtlettes, cupcakes and cinnamon rolls that are baked without wheat, dairy, egg, soy, peanuts, tree nuts, fish, shellfish, seeds, potato, corn, and yeast! Better yet – they deliver to the Front Range of Colorado!

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For those of you who attended the Food Allergy Bloggers Conference in Denver last year, you got to taste these wonderful treats! Not only are they delicious, they are also beautiful!

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Hello Steve & Angie! Could you please share with us what food allergies your family manages?

Hi! Thank you for interviewing us! I (Angie) am allergic to milk, tree nuts, lettuce, and yeast. Steve is allergic to eggs, soy, and corn, and lives with Celiac Disease. Our oldest son is allergic to tree nuts. Our youngest son is allergic to tree nuts, soy, shellfish, and a long list of seeds.

How did Allergen-Free Bakes come into being?

I write a blog about mental health and chronic pain issues, and Steve is an environmental scientist.

A year ago while at Enchanted Grounds, a coffee shop that sells board games, and hosts gaming meet-ups, I turned to Steve and asked if he thought we could open a similar establishment, geared toward the food allergy community. He said yes! That’s how Allergen-Free Bakes was born.

Are your children part of the baking process? What do they think about this wonderful business? 

While they do cook and bake, our sons do not help with business baking. They are, however, willing to be taste-testers, which seems like a great job, but actually requires a good measure of courage! They are excited about our business and we’re grateful for their interest and encouragement.

How did you find yummy recipes for cinnamon rolls, cakes, bundtlettes, pies and cupcakes without the top 8 plus without yeast, corn, seeds, potato and corn?

We started by converting old, basic recipes from the Betty Crocker Cookbook, but it didn’t go well. We read a lot, studied ratios, and began building recipes from scratch. Our current bakes are the culmination of five years, countless tears, and many, MANY experiments in the trash! Remember those taste-testers I mentioned? You can thank them for our delicious bakes! They worked very hard!

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What is your best selling item?

When we first began, people mainly purchased cupcakes, but now cinnamon rolls are the clear winner! We often hear, “it’s been years since I had a cinnamon roll!” or even more touching, “my child has never had a cinnamon roll, and now they can!”

Do you plan on having a store front in the future?

Our vision is a commercial space where we serve desserts and coffee, and host meet-ups for food allergy individuals and families. It would also be great to meet the needs of more people by shipping bakes and getting our mixes onto market shelves.

Where in the Denver area do you deliver?

We deliver all along Colorado’s Front Range Urban Corridor, from Fort Collins to Colorado Springs.

Is there anything else you’d like to share? 

Thank You to Colorado’s food allergy, Celiac Disease, and EoE community! We look forward to growing into a bakery that not only delivers your birthday cakes, but also invites you into a safe space for a slice of pie and a coffee.

Thank you Steve & Angie!

Nicole’s Note: I ordered a cake from Allergen-Free Bakes for my son’s 21st Birthday to be delivered to his apartment near the University of Denver to surprise him. I’ve always had to bake cakes for him because of the cross contact issues in all the bakeries near our home in Colorado Springs.

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My son said the cake was absolutely delicious – it’s the chocolate cake with vanilla frosting and ganache on the top – and a wonderful way to celebrate his birthday with his 3 roommates!

Kiss Freely with Allergen Free Products!

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Kiss Freely products are free of the 8 major allergens and then some!  They avoid the use of other potential allergens such as sesame, shea butter, peas,coconut, avocado and sunflower seed. Below is an interview with Jennifer Kurko, the Founder of Kiss Freely, to find out about these wonderful products.

Hello Jennifer. Can you tell us how you thought of creating Kiss Freely?

My oldest daughter was diagnosed with multiple food allergies when she was 9 months old.  I really thought we were beginning to navigate life with food allergies pretty well.  Until one night when I kissed my daughter on the cheek and she broke out in horrible hives.  I knew it was not from the food I had eaten because we keep a house that is free from her allergens.

It actually wasn’t until a few days later that I realized it was my lip balm.  It contained almond oil,  Up until that moment, I had not thought to look at what was in personal care products.  I went through everything in the house and threw out almost all our lotions and lip balms.  All my makeup.  I wasn’t able to find a safe line of products and as most food allergy moms know, you are already making a ton of food so making my own lip balm didn’t seem like too much of a stretch!

From there I began making body butter and make up.  Friends began asking me to make them products.  My daughter one night at dinner said, “I can’t be the only one who needs special lip balm.  You should sell them.” We formed Kiss Freely so that people who did need “special” lip balm and other products would have those options.

What allergies do you manage in your household?

My oldest daughter is allergic to dairy, eggs, tree nuts, peanuts, sunflower seeds, flaxseeds, beef and sesame.  My youngest daughter is allergic to eggs and is in the process of being tested for EoE and celiac disease.

What makes Kiss Freely so special for the allergy community?

Kiss Freely is unique in that it is the only cosmetics and personal care items to cater to the food allergy community.  It is top 8 free.  I also took great care to make sure we did not include other highly allergic ingredients so we are free from a lot of thing such as coconut, sunflower, corn.

I completely understand cross contamination.  Our workshop is top 8 free.  We use dedicated equipment for all our products.

I also wanted the products to be as natural and environmentally friendly as possible, so all our products are vegan.  We use organic ingredients whenever possible.

I also take custom orders.  They are my favorite because I know someone is able to participate fully in an activity or finally wear their favorite color lipstick after years of being allergic to it.  I make a ton of custom dance orders and I am in the process of making the black under eye color for a young baseball player. I cry every time I get a picture of the person wearing our products.

What is your top selling product(s)?

Orange lip balm is our best seller.  Our face paint is a close second though!

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I love the face paint that you sell. Have you had any customers that can’t tolerate this product? 

It was so nice to see so many kids get to use face paint for the first time! We have not had any customers who could not tolerate it.  I try to use the least amount of ingredients as possible in every product.  The products are simple, natural and  that really helps most people be able to tolerate the ingredients.

I see that a portion of your income goes back to food allergy organizations. Which non-profits do you support?

We have supported FARE and FACCT both locally and nationally.  We also really like to be involved with supporting local allergy  and advocacy groups.  That’s the wonderful part of growing as a business is being able to give more back and be able to make a bigger impact in the food allergy community.

Is there anything else you’d like to share with us?

We are always looking to create new products.  We hope to have shampoo and mascara in the next few months.  Longer term, we hope to create a safe sunscreen.​

Thanks so much Jennifer! 

Note from Nicole: My daughter, who has celiac disease and a mast cell disorder loves these products. She too has had multiple reactions to other makeup and has thoroughly enjoyed the products made by Kiss Freely.

Comparing the available Epinephrine Autoinjectors

There will be 3 epinephrine autoinjectors on the market effective February 14, 2017: the EpiPen, Adrenaclick and the Auvi-Q. All three devices are available in a Junior strength for children, and an adult strength.

Listed below are the pros and cons of each of these devices based upon my experience and upon the information available on their websites:

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EpiPen manufactured by Mylan

The EpiPen has been around since 1977, and owned by Mylan since 2007. There has only been one recall that I’m aware of, which was in 1998 when Meridian Medical Technologies manufactured the device. Almost 1 million devices were recalled since they weren’t providing effective doses of the medication.

The EpiPen training video states that the device needs to be held for 3 seconds after administration.

Pros:

  • The EpiPen currently has the largest share of the market, which means that more people have been trained on this device than any other.
  • A trainer comes with every prescription.
  • The used EpiPen has the needle protected with the orange cap.

Cons:

  • The price! Currently the brand name 2-Pak is around $600+ without a coupon. The generic EpiPen will cost you $300, and no coupon is available.
  • With a generic EpiPen available, and the Adrenaclick (generic epinephrine), your insurance company may not cover the brand name drug.
  • The size. Carrying a 2-Pak is bulky, and many young men really balk at this.
  • The short lifespan. Generally the EpiPen expires within 12-14 months, and you’ll likely have to ask the pharmacist for the furthest out expiration date to get this.

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Adrenaclick manufactured by Amedra Pharmaceuticals

The Adrenaclick has been on the market since mid-2013. The training video states that it needs to be held for 10 seconds after administration.

Pros:

  • The cost at CVS pharmacies. With a $100 coupon, the cash price is $9.99.
  • The lifespan. Adrenaclick’s have an expiration date at least 24 months out.
  • Less bulky than the EpiPen.

Cons:

  • No trainer comes with the package. You will need to contact the company and request to have a trainer sent to you. You can do so here.
  • Fewer people have been trained on the Adrenaclick in school systems and elsewhere. This may change as more people purchase the device and bring it to school, etc.
  • The cost at approximately $400 with high deductible policies if you don’t purchase the device at CVS.
  • The needle is exposed after use.
  • You need to pull both tabs off of both ends of the device before administering it. This can make for confusion as to which end to use for injection, even though it has a red tip. Seconds count in an emergency, and a layperson may have more difficulty with this.

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Auvi-Q manufactured by Kaleo Pharmaceuticals

The Auvi-Q was originally manufactured by Sanofi, and was introduced in January of 2013. A recall of all devices occurred in October of 2015 when two dozen of the devices were suspected to have not administered the correct amount of medication. Sanofi no longer manufactures Auvi-Q. Instead Eric and Evan Edwards, the inventors of the Auvi-Q, brought the manufacturing back to their company, Kaleo Pharmaceuticals. Both Eric and Evan, and their children, have life threatening food allergies.

The Auvi-Q training video states that the device needs to be held for 5 seconds after use.

Pros:

  • The device can talk anyone through the administration of epinephrine.
  • A trainer comes with a prescription.
  • Size. It’s about the size of a thick credit card, which makes it easy to carry in a front pocket for men.
  • Cost. Kaleo is promising $0 out of pocket cost, even for those with high deductible insurance!!
  • The needle is not exposed after use.
  • The makers of Auvi-Q have food allergies themselves, as do their children. In other words, they are one of us – the food allergy community AND they have a social conscience when it comes to pricing autoinjectors.

Cons:

  • The previous recall may be on some people’s minds; however, with the manufacturing moved in-house, I believe this issue has been resolved.
  • The lifespan of at least 12 months. But if you’re paying $0, I don’t believe that’s as big of an issue!

What’s the big deal about CVS & the Adrenaclick?

NBC Nightly News ran a story on January 12, 2017 entitled, “CVS to Sell Generic Version of EpiPen as Cigna Drops EpiPen” in which I was interviewed.

 

I was the woman at the end of the video clip who isn’t so thrilled about the Adrenaclick being offered for $109.99, and I’d like to tell you why!

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First off, there’s a confusion that the Adrenaclick is the generic EpiPen. This is not true. In fact, a local CVS pharmacy that I called tried to tell me that the Adrenaclick is the generic EpiPen!

(Side note: Mylan is offering the brand name EpiPen as a generic at a $300 price tag for a two-pak. The brand name’s price tag currently runs upward of $600, however there are coupons that can bring the price down by up to $300. Cigna also announced on 1/12/17 that they will no longer be honoring prescriptions for the brand name EpiPen, only the generic.)

If you want your allergist to prescribe an Adrenaclick, you will need to have a prescription specifically written for the medication. And if your allergist is like ours, they may not prescribe it. (More on that later).

Next, to obtain the $9.99 price that’s quoted in the video for an Adrenaclick, you may need to pay out of pocket the $109.99 at CVS, submit a rebate form to the company, and wait for the $100 refund. To me, that’s not the same as a $9.99 price at the pharmacy. And remember you have to purchase the device at CVS in order to get this price.

As I said in the clip, I’ve been trained on the Adrenaclick. It isn’t near as easy as the EpiPen to use, nor is it as easy to train others, (especially since the package DOES NOT come with a trainer). It was for this reason that our allergist was not willing to prescribe Adrenaclick for our son prior to his study abroad in the fall of 2016. With him being in different countries where different languages are spoken, and eating different foods, she didn’t want to exacerbate the issue with him having a new autoinjector that he hadn’t ever used before nor had never trained anyone else how to use.

Many K-12 schools and school nurses are not trained on this device yet. If you plan on purchasing this autoinjector, make sure that everyone who could potentially need to administer it has ample training and feels comfortable using it. What may seem obvious to you or me, as an allergy parent, isn’t so obvious to a school administrator or teacher as far as the difference in this device and the EpiPen.

The Adrenaclick training video states that the device should be held for 10 seconds, instead of the current 3 seconds for an EpiPen. And, if you use the Adrenaclick, the needle remains protruding. I always disliked this about the EpiPen prior to its most recent redesign. I very much like that now the used EpiPen has the needle protected to ensure that no injury occurs after injection.

I am excited for competition in the marketplace, and I’d love nothing more than to have an epinephrine autoinjector cost just next to nothing!

I’m really excited about the reintroduction of the Auvi-Q, which should occur within the next few months. What’s really great about it is that it talks the user through the steps to administering it!

The Adrenaclick is just too similar to the EpiPen to cause enough confusion for the administration of the device to be compromised. It’s not a good alternative for our family.

 

 

 

Be Prepared – Shelter in Place with Food Allergies

Today in Colorado Springs, we’ve been having horrifically high winds. So high, in fact, that some residents in our city have been asked to “Shelter in Place”. windstorm

Several years ago, I wrote about Emergency Planning for Food Allergies & Asthma, but I geared the blog post more toward having to leave your home in an emergency.

Shelter in Place requires that you remain in your home or the location where you currently are situated. This can be very problematic if you haven’t stocked up on your child’s safe foods or medications at home; or if you are stuck in a store without an EpiPen!

Here are some of the ways that we have ensured that we are always prepared should a Shelter in Place be activated for our home, or activated when we have left our house:

  • Discuss with your family every individual’s needs, and have a box, envelope or carrying case for all items listed below.
  • Always have two unexpired epinephrine autoinjectors on hand. (This means that autoinjectors are always carried, even if eating isn’t planned). At home, we have at least two more as a backup, plus multiple sets of expired EpiPens, just in case!
  • Have a working nebulizer, along with unexpired medications, and clean apparatus tubing and mouthpieces. This is difficult to keep on your person when leaving your house, so we had an inhaler and spacer with us at all times, when our son was younger and his asthma was more active.
  • Have extra asthma medications and spacers on hand.
  • Any other medications that your child may need – Benadryl, Zyrtec, etc. – need to be on hand and within expiration dates. We always keep at least a 30 day supply of all medications.
  • Keep safe foods in large quantities on hand. Running down to the last slice of safe bread, or allergen-free milk, before re-ordering will make for grumpy children. And it will inevitably occur when you can’t run out to the store, or when Amazon is unable to deliver!
  • Now is not the time to try out new foods. Sticking with standard favorites, and products that you know are safe will mitigate any cross contact with an allergen.
  • Always bring a cell phone with you when you leave your home. If you end up sheltered in place, you can contact other family members to let them know where you are.
  • When our son was younger, we never left the house without safe snacks tucked into my purse.
  • Many customers in Colorado Springs lost power for hours of the day today. This is a VERY unusual situation in our city; however, if this occurs frequently in your location, be prepared! Obtain a battery operated nebulizer, or if you have to, have a generator on hand.

The key with food allergies and asthma is to ALWAYS be prepared – at home or away from home. Hopefully, you will never experience a shelter in place, but if you plan beforehand, the experience can be a mild inconvenience instead of a tragedy.

Stein & Vargas files complaint against American Airlines

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Stein & Vargas, LLP, a civil rights firm based in
Washington, D.C. and committed to the principle that all people have full and equal access to all parts of society. Stein & Vargas, LLP has a special interest in the rights of individuals with food
allergies.

On December 28, 2016, the firm filed a complaint against American Airlines  for targeting and discriminating against individuals with peanut and tree nut allergies in violation of the Air Carrier Access Act.

Here is the press release from Stein & Vargas regarding the complaint: http://home.allergicchild.com/wp-content/uploads/2016/12/DOT-Complaint-Filed.pdf

And here is the complaint: http://home.allergicchild.com/wp-content/uploads/2016/12/Complaint.pdf

Anyone with an allergy or an allergic child who has been denied preboarding by American Airlines can file a complaint here – our voices matter: http://airconsumer.dot.gov/escomplaint/ConsumerForm.cfm

This is very exciting! I’m very hopeful this will at least begin the process of having procedures and policies for food allergic travelers on airlines.

 

Allergy Superheroes!

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Hello Dean & Eileen! I’m thrilled to be able to interview you today about your company, Allergy Superheroes. I love the empowerment that comes for kids with food allergies being superheroes. 

Eileen: Thanks Nicole! We love focusing on the positive too. There’s no better analogy for food allergies than kryptonite. If Superman can have a weakness and still save the day, then our kids can too!

Please tell us how your company came into being.

Dean: When our boys were diagnosed with food allergies, it wasn’t really a life-altering experience like it is for most new families since Eileen has a lifelong experience with it. But when they started school we became acutely aware that the rest of the world doesn’t really get it yet. When we realized the kryptonite analogy, we combined our love of superheroes with that positive message to help get the idea of food allergies across and spread awareness.

I especially loved the teal leaf bags you had available for Halloween. What are your highest selling products?

E: Our teal pumpkin products did really well this past October, especially the candy buckets. In general our slap brasingle-dose-benadryl-bottles-allergy-superheroes-food-allergy-2celets do really well (and we’re about to release them in more allergens) and everybody loves our single-dose liquid medicine bottles.

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Born out of my desire not to carry a full (not to mention heavy) bottle of liquid Benadryl with me all the time, those have really made my purse lighter and everybody else loves them too. But my personal favorite is our “I have a kid with a food allergy, you bet I’m a SUPERMOM” travel mug.

D: I sometimes wear the slap bracelets even though I don’t have any food allergies. It helps to spread awareness and they’re a lot of fun!

What food allergies do your two boys have? 

E: Our older son is allergic to egg and peanut, though he is finally starting to outgrow the egg and he’s been handling it in baked form for a little more than a year. Our younger son is just peanut. Both of them have a big question mark around some of the tree nuts though, because introducing those has been problematic because of my allergy to them.

How do they feel about being a part of your company?

E: They love it! Modeling usually requires bribery of chocolate to get everyone through it, but they love being part of this and they know it’s something special. We have overflowing file folders of the artwork each of them has drawn of our characters.

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D: Our boys are really into superheroes, so they love the idea behind the business and our characters. They wear their food allergy superhero shirts a lot and love helping to come up with new ideas on how to spread awareness. It really is a family venture!

Can you share a story of superpower one of them has enjoyed in life?

D: Our oldest is very active and outgoing. He has no issues with talking about his food allergies and spreading awareness about them. When a birthday party comes up, his friends know about his allergies so they make sure their parents talk to us so that their birthday treats will include him! He also loves to draw and we can see him doing a lot of the artwork side of the business when he gets older!

Eileen, you have had food allergies all your life. What was it like growing up in the 1980’s with food allergies? 

E: Different, very different. There are times that I look back and just shake my head. I actually wrote a blog post a few months ago about how my “food allergy mom” life is easier than my mother’s was, where I highlight a bunch of resources and improvements. This could really be the subject for a novella since so much has changed, but some major points:

It was harder to get diagnosed and get proper medication–I had an anaphylactic reaction to eggs at 12 months, but the only prescription I received upon leaving the ER was for Benadryl (it wasn’t OTC), and we weren’t sent to an allergist or even told to avoid eggs (my mom avoided them anyway.) I had some smaller reactions and then another anaphylactic one to nuts in the months before my 4th birthday, and then I was finally prescribed epinephrine, but I wasn’t tested for allergies until I was 6. (By then there was no trace of an egg allergy.) And that was the only testing I had done as a child.

Most people hadn’t heard of food allergies. I did a lot of explaining and so did my parents, but it was rare to encounter anyone who had previously heard of allergies or could accommodate them.

There weren’t very many of us. I was unique in my dietary struggles, though I don’t remember feeling down about it very often. I was in middle school before I finally met one other kid who had food allergies. (I think my mom secretly hoped we’d become best friends and look out for each other, but he and I never hit it off.)

Epinephrine was carried in single doses and was basically seen as a last resort. We weren’t told to use it unless things got really bad. The whole concept of always having two doses and using epi “first and fast” is actually a pretty new concept (and one I’ll confess that I struggled with. Benadryl got me through so much in my youth, so the thought of using epi preemptively and then sitting around bored in the ER for 4+ hours was something I did not get behind for a long time.)

We didn’t have the internet. As a result, news of food allergy deaths seldom reached our ears so our perception of the risk was less. That may have put us at greater risk, but probably also reduced our anxiety level. But on the other hand, we didn’t have many resources available to us, either. My mom used to receive a monthly newsletter from a now-defunct allergy and asthma organization, and most of the articles were on asthma. If she’d had access to the community we have today, I’m sure our lives would have been a lot different–certainly a lot less isolated.

D: Nowadays, awareness is growing, but there is so much more work to be done. It’s hard to fathom going through that with virtually no awareness or support at all. The kids and parents of that time period and earlier are real superheroes in my book!

How did you manage to stay safe in school, dating, eating out without the awareness that’s available today?

E: I’m going to start by saying that I was pretty lucky to “only” be allergic to tree nuts. If I’d been allergic to, say, dairy or wheat, or if egg had stayed with me, I’m sure things would’ve been a lot harder, because I would’ve encountered them a lot more. Tree nuts aren’t as widely used, so my life was not as restrictive as it could have been.

My mom considered it a victory to actually get my EpiPen into the nurse’s office, though she has repeatedly expressed doubt that anyone there would’ve known how and when to use it. We put a lot less emphasis on inclusion back then and mainly focused on “do what you need to do to stay safe.” The world isn’t nut free, and my mom wanted to make sure I understood that I couldn’t always participate in shared treats. When foods came into the classroom I would ask questions, and sometimes I would just do without. I don’t think I ever had a backup stash at school. I don’t think that even occurred to my parents.

I think I started self-carrying around 5th grade, which I’m pretty sure made my parents feel safer. I had a fanny pack that year, then somewhere along the line I just switched to carrying it in my backpack. I don’t have very distinct memories of any of that, it just sort of happened when it happened. I got a fairly good handle on what I shouldn’t eat by then, and I can’t recall any school-related reactions beyond early elementary school.

Telling boyfriends about my allergy was definitely a priority. We had a “no kiss” rule growing up if my parents ate something I was allergic to, so that transferred over to dating. Generally, I would tell guys that they shouldn’t eat nuts while we were out. I wasn’t forward enough to add “or you can’t kiss me,” at least not early on, but no one ever challenged my rule, either. I can’t say I put any thought into what they’d eaten previously–but then, the first supposed “peanut butter kiss of death” didn’t happen until I was in my 20s, so that was another danger that I simply wasn’t aware of, nor did I fall victim to it. But I didn’t date a whole lot, either.

(Dean here, she was worth not eating any tree-nuts before or during our dates for that goodnight kiss!)

Something else that is very different today is awareness of cross contamination. Some might argue that cross contamination doesn’t have much awareness, but when I was little there was none–and I mean none. We were never warned against it by our doctors, foods never labeled for it, and the general principle we lived by was “don’t eat anything with nuts actually in it.” We knew you couldn’t pick nuts out, but even the concept that you couldn’t use the same knife was something we learned (painfully) the hard way. There were a handful of reactions from my childhood that we traced to contamination as we struggled to figure out the concept, and some other “mystery” reactions that must have been from CC.

Kissing, cross contact–basically, these things had to happen a few times before doctors, patients, the news, and lawmakers figured out the pattern and started doing something about them.

So when it came to restaurants, we did a lot of educating. It wasn’t uncommon for me (or my parents) to explain what food allergies were to restaurant staff–and after we learned about shared knives and foods touching, we told them not to do that, either. Whether any of them actually took precautions in the back is debatable–but on the other had we were pioneers, laying the foundation policies that restaurants are adopting today. It’s a wonder that we ate out at all–but without the internet shoving food allergy deaths in our faces every few months, the danger of that happening also seemed farther away. At times we coasted through on ignorance and luck.

Is there anything else you’d like to share?

E: It’s been great getting to be part of this community since we started up a few years ago–it’s such a welcoming and positive space. I also blog at www.allergysuperheroesblog.com and I started that up because I wanted to share my perspective of dealing with two generations of food allergies–my outlook is different since I’ve been through it myself, but caring for your allergic child is definitely different than managing your own allergies, too. Most of the time we don’t see the after effects of the things we’ve done, but it’s really all about helping people. On the rare instance that we get feedback that we’ve helped someone, or given good advice, or made someone feel more confident about the future, that’s when we know that we’re doing the right thing. We love all of the connections we’ve made over the past few years!

D: It really is the most fantastic community to be a part of! We’ve met a lot of amazing people and we’re continually inspired by them. And when we get to meet them in person at conferences like FABlogCon, it truly is a SUPER experience.

Thanks so much!

Thank you Nicole, we’ve loved chatting with you!

Disability Rights Attorney & Food Allergy Mom, Mary Vargas

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Hello Mary. It’s wonderful to interview you today. Can you please tell us how you became involved in disability law, especially as it relates to food allergies and anaphylaxis?

I’ve been a disability rights lawyer for almost two decades. I started my career at the National Association of the Deaf doing disability discrimination litigation. When my own child was diagnosed with food allergies and subsequently turned away from a summer camp because of his allergies, my worlds collided. I found myself in the uniquely familiar position of advocating for inclusion but this time I was advocating for my son. I realized that if the child of a disability rights lawyer was denied access because of food allergies, there was work to be done.

What food allergies does your family manage?

I have three boys and only my youngest has food allergies – peanuts, tree nuts and shellfish.

What lawsuit(s) have you litigated that pertain to food allergies and anaphylaxis?

Stein & Vargas, LLP has a special interest in pursuing litigation that will create safe and equal access for people with food allergies. We’ve litigated a number of cases throughout the United States on behalf of people with food allergies who have experienced discrimination whether it be in employment, education, or access to programs and services. Among the complaints we have pending now are a complaint against Young Shakespeare Players East in which the United States Department of Justice has concluded that Young Shakespeare Players East discriminated against my 11 year old client on the basis of his food allergies and retaliated against my 13 year old client for advocating for her friend’s rights. We are also co-counseling on a case with Laurel Francoeur against Panera on behalf of a child who had an anaphylactic reaction after being served a grilled cheese sandwich that contained peanut butter despite notice that the sandwich was for a child with a peanut allergy.

From your experience as an attorney, is there anything that a food allergy family should be aware of or take action on to ensure the safety and inclusion of their child in school? 

The most important aspect of safety and inclusion at school for food allergic kids is the development of a strong and positive relationship between the school and the parents. The focus cannot be on highlighting where plans failed, but on building long term trust and commitment. Even the most knowledgeable and well-meaning schools will fall down sometimes.

You are a Co-Founder of  Allergy Law Project. How did that come into being?

Allergy Law Project was the brainchild of Laurel Francoeur who approached Homa Woodrum and I two years ago about the need for reliable legal information in the food allergy community. There is incredible power when parents of food allergic kids put their brains together for the good of the community.

I love the blog post called “A Seat at the Table – Bringing Allergy Friendly Food to Restaurants“. You said that’s the question you are asked the most. What can a family do, in the moment, if a restaurant forbids them to bring in outside food? Is it necessary to bring along the state law to reference or is there some other statement that can be used to allow outside food?

Generally, families can ask calmly and respectfully to speak with the manager. Explain to the manager that your party is looking forward to enjoying the food that the restaurant offers but your child cannot safely eat the food. If after calmly talking this through and explaining why it is necessary for your child to bring safe food in order for the rest of the dining part to eat at the restaurant the manager still refuses, you may need to go higher up the chain. You might send a politely worded letter to the restaurant owner to educate them about food allergies.

Many food allergy families are concerned about Donald Trump’s comments about “streamlining” the Department of Education and curbing the role of the Office of Civil Rights. What can food allergy families do to protect their child and do you think that is likely to occur?

I have grave concerns about the impact of the incoming administration on many aspects of the work we do. The Office of Civil Rights within the Department of Education, the Office of Civil Rights within the Department of Health and Human Services, and the Disability Rights Section all have a critical role in ensuring compliance with our federal rights. Significant cuts in staffing could jeopardize the ability of these agencies to safeguard rights and changes in philosophy could undermine enforcement actions throughout the United States. There is so much at risk and already resources are stretched tightly. I’m also concerned about the potential rollback of food safety regulations that has been threatened. My hope is that the allergy community has the potential to speak loudly and in concert to defend important rights.

If someone reading this feels they need legal advice pertaining to a disability law question, how can they contact you? Stein & Vargas, LLP’s website is www.steinvargas.com. Folks are welcome to contact me with questions through the website.

Thank you very much Mary!

Ms. Vargas is committed to ensuring full and equal access for all individuals. She has litigated cases pursuant to the Americans with Disabilities Act and the Rehabilitation Act throughout the United States in federal and state courts.

Ms. Vargas also represents women who are denied access to reproductive care and coverage. She has successfully obtained full coverage of late term abortion claims through insurance appeals. She also speaks nationally on issues including women in law, movement building, discrimination, pain, food allergies and anaphylaxis, and reproductive rights. Ms. Vargas is a co-founder of and blogger for the Allergy Law Project.

Prior to joining Stein & Vargas, LLP, Ms. Vargas was a staff attorney with the National Association of the Deaf.  Ms. Vargas was a 1998 Skadden Fellow and a 1994 Truman Scholar. Ms. Vargas was the 2010 recipient of the Advocacy for People with Pain Award from the American Academy of Pain Management. She wrote for the American Bar Association, Mental and Physical Disability Law Reporter.

Ms. Vargas obtained a B.S. in deaf education from the College of New Jersey, and a J.D. from the University of Connecticut, School of Law. While in law school, she was appointed to the Client Advocacy Board and served as student director of the Yale Law School, Advocacy for Persons with Disabilities Clinic.

Ms. Vargas is a member of the bars in Connecticut and Maryland.  She associates with local counsel around the country in bringing cases of special importance to individuals with disabilities.

Food Allergy Bloggers Conference Weekend Wrap Up

 

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The Food Allergy Bloggers Conference was held in Denver, CO this past weekend, and wow was it fun! The conference is more than just about blogging, there’s also a “disease” track that offers wonderful speakers who spoke about research that their children were involved in; doctors who detailed eosinophilic disorders, parenting tweens/teens with food allergies and much more! There are many gluten-free bloggers who also are a large part of the attendees. And the Expo is amazing – so many new products for food allergy individuals and new foods to sample.

I started off the weekend learning more about Instagram Stories, Facebook Live, Snapchat and more! You can see the proof of my learning Snapchat above!!

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Jenny Sprague is the Founder and Manager of the conference. It is a year-long mission to put on this great conference, and every year she does more amazing things.

At the Welcome Dinner, we heard from Eric and Evan Edwards, the Founders and Co-Inventors of the Auvi-Q.  They shared their personal experience of having life threatening food allergies – and the fact that their children also have them – hence it is personal for them to bring back the Auvi-Q as soon as possible. And they are planning on doing that before June 2017, at a “very low price” even for those with high deductible insurance policies. I asked them about this price, and it sounds like they are shooting for below $50!! The two met with several of us bloggers to find out more of the issues we’ve had gaining access to epinephrine autoinjectors at a low price. I came away feeling that they really are invested in helping our community, and as they said, “this feels like home” to be with the food allergy world!

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Saturday was filled with presentations, not the least of which was my husband, Robert’s, and my presentation on Parenting Your Tween/Teen with Food Allergies.

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We shared our experience and stories about raising our son, Morgan, and the various challenges and opportunities we had to empower him as a self-advocate through his tween years of school, campouts, overnight field trips and sleepovers. And through his teen years of homecoming, prom, dating, kissing and alcohol awareness. We had great audience participation and questions.

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We were thrilled that our daughter, Michaela, was able to join us for the conference. Also, FAACT was the sponsor of our presentation. Eleanor Garrow, President & CEO of FAACT, is shown above with our family. We were definitely missing our son, Morgan, who is currently studying abroad in England.

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One of the best parts of the conference is getting to meet in person bloggers and authors whom I’ve only met online. Above is Cookbook Author Cybele Pascal, on my right, and Allie Bahn, Miss Allergic Reactor, on my left. It’s so great to connect with these wonderful women!

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And what would a conference be without a couple of superheroes from Allergy Superheroes? Love these two who marched around the entire conference in capes!

I was able to stay in the Denver Renaissance Hotel, for the first time, because Keith Norman was the first chef willing to take on feeding me! And believe me, that’s no easy feat with my mast cell and eosinophilic esophagitis diagnoses. I have so much appreciation for Keith’s willingness to provide safe food for all attendees.

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The conference continued on through Sunday, although our family had other plans, so we had to leave early. It was an amazing weekend, and one that I’m already planning to attend next year!

 

Emotional Support Animals and Students with Pet Allergies

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There is a new issue that I’ve been hearing about frequently on college campuses, and it affects our children with pet allergies: emotional support animals.

For those students who have severe animal allergies (like my son, Morgan) living in the same dorm as these emotional support animals can be hazardous. An emotional support animal differs from a service animal, according to the National Service Animal Registry in that “an Emotional Support Animal (ESA) is an animal that, by its very presence, mitigates the emotional or psychological symptoms associated with a handler’s condition or disorder. The animal does NOT need to be trained to perform a disability-specific task, whereas a service animal does.

All domesticated animals (dogs, cats, birds, reptiles, hedgehogs, rodents, mini-pigs, etc.) may serve as an ESA. The only legal protections an Emotional Support Animal has are 1) to fly with their emotionally or psychologically disabled handler in the cabin of an aircraft and 2) to qualify for no-pet housing. No other public or private entity (motels, restaurants, stores, etc.) is required to allow your ESA to accompany you and in all other instances, your ESA has no more rights than a pet.

You’ll also need to be prepared to present a letter to airlines and property managers from a licensed mental health professional stating that you are emotionally disabled and that he/she prescribes for you an emotional support animal.

My son lived in a college dorm for 2 years, and in that time, there was a HUGE increase in the number of students with emotional support animals. At the University of Denver, they recognize that the needs of a student with severe pet allergies are equal to the needs of a student with an emotional support animal. However, the only way that a school is going to know that your child has severe animal allergies is for the paperwork to be completed and medical documentation provided.

My son was placed in a dorm on one end, and the students with animals were placed on the other end. That way there was no shared ventilation, which could have exacerbated his asthma.

I’ve recently heard of two situations at two different universities where a student brought in an emotional support animal without having paperwork completed until AFTER moving in. In both cases, the roommates were unaware that there would be an animal prior to moving in. And to make matters worse, in each case, at least one of the roommates had severe pet allergies, but had neglected to tell the university of such.

Both situations have caused a large amount of stress for all involved, and the university is caught in the middle of which student needs to move out and which needs to stay.

My suggestion: if your child has severe pet allergies (and this would also include children in K-12) make sure to have the paperwork completed so that the school is aware of these allergies. This will allow for any accommodations needed, such as no contact with the animal, no field trips where the animal is present, and no shared vents with the room where the animal is located. Prior to placing a child with a pet in your child’s classroom, or allowing a college roommate to have a pet, other arrangements can be made.

 

Healing through Traditional Chinese Medicine for EoE/Mast Cell Diagnosis

I have been a patient in Dr. Xiu-Min Li’s private practice for about a year now, and it was time for me to meet her in person. We have been having once a month telephone appointments. Meeting Dr. Li in person was like meeting a rock star! She and I hugged each other like long lost friends, having spoken on the phone for a year.

I have written about Traditional Chinese Medicine (TCM) before, and you can read that blog post here.

Most of Dr Li’s patients travel to New York City to meet with her before they start treatment. However, it is VERY difficult for me to travel, and being an adult, she was willing to consult with me after receiving a battery of blood tests and endoscopy results for my eosinophilic esophagitis and mast cell disorder diagnoses. I also have IgE allergies to several foods – peanuts, onions and corn.

Because of these diagnoses, and gut issues every time I try a new food, I am currently eating just 4 foods: organic chicken breast, organic turkey breast, organic broccoli and Cascadian Farms organic hash browns. (For some reason, those potatoes, having been parboiled to perfection, work for me while homemade hash browns parboiled do not.) Mast cells and eosinophils are crazy!

When I travel I must either bring these foods or be able to purchase them. And because all of these foods are low in calories, I eat 6 times a day, about 2 hours apart. I have to cook all the foods for my stomach to tolerate them – not that I would be eating raw chicken! But even raw broccoli doesn’t work for me currently.

My recent trip to meet Dr. Li felt like a big accomplishment. I was able to stay with a fellow food allergy Mom, and to use her kitchen to cook all my meals. I ordered my food from FreshDirect and had it delivered to her apartment prior to my arrival. What a wonderful service that is in New York City! And what a wonderful friend I have to put up with me cooking non-stop!!

As far as the Traditional Chinese Medicine that I’ve been taking – I’ve been on a cream IIIvb, which looks like avocado dip, and I apply it once a day, every day. I’ve recently begun an herbal foot bath, which is all that I can tolerate currently. Most of Dr. Li’s patients use herbs in a “real” bathtub, however I am currently too sensitive for that. The combination of these two treatments, which permeate the largest organ – the skin – have begun to decrease my body’s sensitivities. I have yet to begin to swallow any TCM treatments. Again, most patients are able to start with this, but my system is still in need of healing more before I will be able to swallow any teas or pills. Dr. Li’s protocol is not something that I could manage myself, and I couldn’t go to a local store to purchase the herbs. I feel very grateful that I have a doctor, with such knowledge, managing my care.

I realized how much better I’m doing when I was asked by Dr. Li to rate my improvement. I’m far less reactive to smells and contact with the environment. I have much more energy. (That’s the real issue with mast cell degranulation for me – it zaps my energy). And I’m far less anxious. I really want to eat different foods, and Dr. Li thinks that’s in my not-too-distant future. She wants to try some Chinese vegetables because it’s something I haven’t ever eaten, so hopefully my mast cells won’t recognize the food as an invader!

For me, TCM is more about how I feel than any blood test result. We aren’t trying to cure any food allergy. I’m willing to not eat a few foods that I’m allergic to…I’d like to be able to eat all those other foods that currently I can’t tolerate because of the mast cell/EoE issues!

Dr. Li suggested that I purchase a pressure cooker to cook the meats that I eat to make them more easily digested. Upon returning home, I immediately purchased an “Instant Pot”. What a wonderful little device! I can cook my chicken in 15 minutes, while my potatoes are cooking on the stove. This allows me to always eat fresh, and to cease microwaving foods to reheat them, which Dr. Li wants me to quit doing – “as much as possible in our busy lives”. She’s always so patient and kind!

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I’m continuing to increase the amount of cream that I apply, and to increase the amount of herbs in my daily foot bath. It’s so exciting to feel healing occur in my body.

The various medications that I’ve been on – Ursodiol, Zyrtec, Zantac and Ketotifen – only mitigate symptoms. They do nothing toward a true cure or healing. I’m grateful to have them, and I’ve been able to decrease the amount of medication that I take daily since starting on the TCM protocol.

The future looks very bright!

 

 

 

 

What SHOULD Mylan do about EpiPen’s Price?

It has been a firestorm over the last week with consumers, doctors, and the media calling out Mylan for its price gouging of the life saving medication, EpiPen. While Mylan CEO, Heather Bresch, argued that the problem is with the health care system instead of with Mylan in particular, Mylan did come to the PR table to provide further discounts to consumers.

Heather BreschThis is too little and too late, especially for the thousands of consumers who have already scrimped and saved to purchase EpiPen 2-Paks for their children to take to school this year. Nothing monetarily was provided for any family who has already made purchases.

Additionally, this appears to be a public relations tool to not only stabilize their stock price (which has dropped almost 11% over the last three days), but also to quell all the media attention.

What should Mylan REALLY do? Here’s what I’d suggest:

  1.  Give Heather Bresch her walking papers. She has been a controversial figure with her MBA credentials having been called into question, and the EpiPen price increases were destined to be an issue if anyone had had the foresight to see the writing on the wall. Let her take the fall for this and wipe the slate clean. She has stated that EpiPen is “her baby,” so she is responsible for the price gouging.
  2. Cut the EpiPen 2-Pak price to $300, the price it was in 2013-14. With their new $0 copay card value of $300, this would allow consumers to pay nothing. It would also be decreasing the cost of the product for insurance companies portion of the prescription – which we consumers are still paying in the form of higher premiums.
  3. Make Anaphylaxis 101 a non-profit. It’s going to be difficult for Mylan to find a spokesperson now that both Sarah Jessica Parker has stepped down and Kelly Rudnicki, a Food Allergy Mama, who is a beloved figure in the food allergy world. Making the website Anaphylaxis101.org would allow for some good to be coming out of Mylan toward the food allergy community. And put a few members of the food allergy community on that non-profit board of directors!
  4. To further that thought, Mylan needs to get a PR makeover. The best way to do that is GIVE, GIVE, GIVE to the allergy community and to apologize for what they’ve done with raising the price of EpiPens beyond what American consumers can afford. Americans love a redemption story, and it’s time for the old Mylan philosophy of greed, corporate tax evasion and executive compensation packages to be burned to the ground. What can rise is a new company, with the philosophy of collaboration and innovation.
  5. Lastly, Mylan needs to take the HUGE amounts of profits that they made from EpiPen sales and put the money into research of an auto-injector product that meets the needs and desires of consumers: small, lightweight and a stable shelf life of 2 years or more.

Mylan could be a hero to the Food Allergy World if they’re willing to make amends and give up their current corporate philosophy. Become the company that our children would want to work for! If not….then I cannot wait for the competition that’s forthcoming in the epinephrine auto-injector market!

What to do about the high cost of EpiPens!

I recently wrote about The Scary Price of EpiPens. There have been numerous articles online about the increasing price, and various suggestions of how to mitigate the issue.

Here are just some of the articles:

High price of EpiPens spurs consumers, EMTs to resort to syringes for allergic reactions

Mylan’s EpiPen price increases are Valeant-like in size, Shkreli-like in approach

Allergy sufferers caught between EpiPen price hike, health plan crunch

Martin Shkreli Weighs in on EpiPen Scandal, Calls Drug Makers ‘Vultures’

I love this idea that Dr. Dave Stukus has for decreasing the cost of EpiPens:

Dr Stukus Tweet on EpiPens

I have been interviewed by numerous news agencies about the high price of EpiPens and I have told each of them that Mylan’s high prices would be better understood IF they were creating a smaller EpiPen and/or if they were working on extending the expiration date of the product to 2 or 3 years from the current 12-24 months. Since neither of these are occurring from every response that Mylan has provided to the media, I can only assume that they are increasing the price to pad their profit while enjoying their monopoly status.

I decided to write my two US Senators and my one US Representative and ask them to request an inquiry into Mylan’s pricing practices. Here is the gist of the letter that I wrote (and please feel free to copy/paste and add your pertinent information):

Hello Senator/Representative ____________________________
You may have seen the recent Denver Post article titled, “Allergy sufferers caught between EpiPen price hike, health plan crunch”. We are very dismayed at the rising cost of the EpiPen for no good reason. There are 15 million Americans with food allergies, and the EpiPen is providing $1 billion in sales for Mylan, the manufacturer of the EpiPen.

Certainly, part of the issue is the changing prescription coverage for those of us with high deductible health plans. Another part of the issue is Mylan who have raised the price of the autoinjector astronomically since 2007 when they purchased the patent.

My recent trip to purchase an EpiPen yielded a price of ________ for a 2-Pak EpiPen prescription for my child. Mylan offers what they call a $0 copay card, which actually maxes out at $100. Therefore, the cost of the prescription would still be ___________ for our family. We could not afford to pay for the medication.

This is lifesaving medication for my child, who has anaphylactic food allergies to _______________.

In the past, we would have purchased four to six 2-Paks of the medication for safety’s sake.Our child will have an expired EpiPen 2-Pak as his backup. This is not ideal, and we are not alone in having to make these difficult financial decisions.

I would like to request an inquiry into Mylan’s practice of huge price increases for this drug, when there have been no improvements at all.
Mylan currently has no real competitors other than a generic alternative, Epinephrine USP, which would still cost us $400 with our insurance. Without competition, we consumers have no real hope for change, hence the need to ask for your assistance.

To date, I have received one response from Representative Doug Lamborn:

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Plus I received a phone call from Senator Michael Bennet’s office telling me that he has a contact at Mylan that he will speak to regarding this situation.

I just saw this post today from Minnesota Senator Klobuchar:

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Please write to your US Representative and Senators! We, the food allergy community, don’t have to accept these price increases.

Encouraging my Son to Study Abroad

Many of you have read my son, Morgan’s, recent posts about studying abroad with food allergies. If you’ve missed them, please read them on his Morgan’s New Corner blog here and here.  He wrote extensively about the details of what it took for him to be able to study abroad safely. He will be traveling throughout Iceland, Spain, France, Italy & Greece in August; doing research in Copenhagen, Denmark in September, and studying at the University of Lancaster in Britain from October through December 18.

As a parent, it was difficult to wrap my head around him studying abroad when he first brought up the subject prior to leaving for college. At the University of Denver, approximately 70% of the students study abroad – generally in their junior year. There were seminars about studying abroad for parents to attend during the Parent portion of the Freshman Orientation Week. I sat through those discussions and wondered how we, my husband and I, would ever be able to support this endeavor! Yet we both agreed that this was an opportunity not to be missed, if it was possible. It was going to take plenty of preparation, but the good news was – Morgan would be doing that instead of me!!

Over the past 2 years of college, Morgan has shown more maturity in being able to handle the details of his medical care. He has also become far more organized, and took on looking into the schools abroad that could accommodate his needs for safe food. Since middle school, he has been responsible for ALWAYS carrying his EpiPen 2-Pak, which he does ALWAYS. He knows how to recognize an allergic reaction in himself, and how to teach others. He can also teach others how to administer his EpiPen. He has vast experience with traveling by himself, and in groups, and keeping himself safe.

Since he doesn’t speak a second language, we knew that he would need to have an English speaking country for his study abroad, and thankfully he agreed with that wholeheartedly. I remember speaking with a father at a Parent’s Weekend at DU who was telling me that his son went to Australia for study abroad and loved it. He then mentioned that his son has a peanut allergy. I commented that it was probably easier to manage his peanut allergy in an English speaking country. The Dad said that he’d never thought of that! For some parents of children with food allergies, there is a different level of vigilance than what we’ve practiced.

We have chosen the vigilant lifestyle, based upon Morgan’s past allergic reactions. I can’t imagine being cavalier about where Morgan chose to study. It was also important, however, that Morgan take responsibility for ALL parts of the study abroad. This included whether the college/university had classes that would fit into his major; whether he could find a living arrangement that would keep him safe; and which airline he would choose to fly to his various destinations.

There are so many pieces of this puzzle to put together, and we allowed him to be the Project Manager of this adventure. He learned about an app called Trello that he was using with another project at school. This became our go-to place for listing all the details of what needed to be done prior to his departure. He would list various items that he knew he needed to provide to get into the country; and I listed other items important to me. Together we made it happen, and I also had to quit micro-detailing him to death. At 20 years old, he had shown how responsible he was, and I needed to trust that whatever happens abroad is for his highest and best good.

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Yesterday, we took him to Denver International Airport. I couldn’t believe that we were at the launch point! The years of teaching him how to be safe with food allergies were going to get the biggest test yet. He has a written plan for the cities he will be visiting detailing where he’s staying, and he’s checked out various markets and restaurants. He’s going to purchase a SIM card in each of the countries he’s visiting to be able to communicate with us and with others. We will be communicating through Skype while he is abroad, however he told me to expect a weekly update – not daily! He will provide a map “touch point” every time he enters into a new city while traveling during August. This will allow us to know he has safely arrived. He also provided us with his detailed itinerary for the month of August, so we know where he’s planning on being. He’s traveling with two DU friends – one of whom flew with him. The other one, they will meet in France.

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It’s not easy to allow our children to grow up and participate in college life! I cried many a tear yesterday, and hugged him three different times before he got on the escalator to head to TSA. I’m so excited for this adventure for him. And I’ve already counted the days until his return – 139 to go!

 

 

The Scary Price of EpiPens

epipen2pack

Have you been to the pharmacy recently to purchase an EpiPen 2-Pak? If you have a high deductible policy like our family does, you may need a nitroglycerin pill when paying for the prescription!

We have an Anthem HSA (Health Savings Account) insurance policy with a high deductible. What this means is that we pay $4000 of a deductible before our insurance kicks in to cover any cost of prescriptions. This means that my son’s most recent prescription was going to cost us $600!! Yep, you’re reading that correctly.

I thought this wouldn’t be an issue since Mylan is offering a $0 copay card that’s easy to find all over the Internet.

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However, the fine print states that the maximum amount of monetary coverage is $100. Therefore, Morgan’s prescription would still cost us $500. And we generally purchase two 2-Paks, a month apart, so that he always has one 2-Pak on his person, and the other 2-Pak is an extra set for his dorm room in college. That’s $1000 – of very important insurance – but it’s for a purchase that you hope to never have to use. And in fact, in the 19 years of having EpiPen Jr.’s and EpiPen’s prescribed, we’ve only used one autoinjector. It was certainly needed, and we were very grateful to have it. Yet there are many families who cannot afford to purchase even one 2-Pak of this drug at the current costs, and that’s dangerous.

For those of you thinking about a generic alternative, I too looked into that. The generic device is called the Epinephrine USP :generic-epi

While this may be a wonderfully, cheaper alternative for some (depending upon your insurance coverage), this prescription was quoted by Anthem at $400 for a Two-Pack with our insurance.

As most of you know, there is no other alternative currently since the Auvi-Q has been pulled from the market in a full recall of the device.

We eventually purchased two EpiPen autoinjectors made by Meda (the European based pharmaceutical drug company that Mylan recently acquired) from Canada Drugs for $225. They were shipped to our home in a styrofoam package to ensure temperature stability, and had an expiration date 14 months into the future. Never did I think I’d be happy to purchase 2 EpiPens for such a high cost.

What is going on with the cost of EpiPens?

I’ve done a little research that I’d like to share with you:

As I said before, we’ve been purchasing EpiPens for 19 years. Some years, we’ve had great insurance that covered the entire cost of several EpiPens. Other years, we paid $100 or less. It’s been only in the last few years that the price has been skyrocketing.

Previous to 2011, I was able to purchase just one EpiPen at a time. In fact, it wasn’t until 2011 that Mylan began selling only the 2-Paks when the National Institutes of Health suggested that patients have immediate access to two doses of epinephrine. We always purchased an abundance of extra EpiPens (and Jr’s) to ensure we always had one at arm’s length, and the cost was rarely an issue. But for some people, purchasing just one EpiPen would be preferable to none – yet, this is no longer an option.

The Affordable Care Act has certainly changed the nature of insurance, and thereby the cost of medical care for consumers. Depending upon your insurance company and coverage, you may not even be aware of the increase in the cost of EpiPens…or you may be selling off your couch to afford this vital medicine. From what I’m hearing from our insurance agent, more and more insurance companies are moving toward covering less and less of the costs of prescriptions.

Then, there’s Mylan, the company that makes EpiPens.  Mylan purchased the rights to manufacture the EpiPen in 2007 when the device had a wholesale price of $57, and the cost of the epinephrine in the device was about $1. Mylan has increased the wholesale price by 400% since then, while the cost of the epinephrine remains at about $1.

The spokespersons for Mylan will say that they don’t set the retail price, but any college business student can tell you that the higher the wholesale price, the higher the retail price. And if Mylan is counting on their $0 copay card to be the catch all for the price of an EpiPen 2-Pak, then they need to have the copay card be truly worth $600!

For those families who don’t have the money to pay for an autoinjector, they will likely have to rely upon a school’s stock epinephrine. Yet, these cost increases also affect schools and emergency services who cannot afford to purchase the drugs, even if Mylan did give away devices for free in the first years after legislation was passed to allow stock epinephrine in schools.

CNBC’s September 28, 2015 article, “Drug prices: Which companies may be the next targets?” pointed out that the price of EpiPens increased 27% , on average, each year between 2011 and 2015. The number of prescriptions rose 9.5%, on average, each year from 2011 to 2014. This made for an average increase of 42% per year of sales, to more than $1 billion. The EpiPen provides about 40% of Mylan’s operating profits says researcher ABR|Healthco. EpiPen margins were 55 percent in 2014, up from 9 percent in 2008, ABR|Healthco estimates.

Marketing the EpiPen autoinjector has been CEO Heather Bresch’s key focus. In terms of market share, she’s basically got a monopoly. I anxiously await a viable competitor, which will hopefully bring the price of epinephrine autoinjectors down. Sadly, there aren’t any contenders on the horizon. I’ve seen several prototypes, but many require assembly, which would be extremely difficult to expect a Good Samaritan to be able to do in the middle of anaphylaxis.

Mylan has not only been increasing the cost of EpiPens, but also several other generic medications that they manufacture. There is a point where the market will not allow this to continue. Congress has stepped in before (remember Martin Shkreli?), so there’s always the option of writing your Congressional Representative and/or Senator to let them know how the price of EpiPens affects your family. I believe we are at a tipping point, but it’s going to take hundreds of thousands of us to make noise to get anything to happen.

Lastly, there’s the CEO, Heather Bresch. Heather Bresch had a total CEO pay of $18.9 million in 2015 while shareholders saw a 4.1% decrease in returns. In the last year, the stock price has dropped 38%. Don’t get me started on the faults in our US corporations that believe that any employee is worth that kind of money – especially when it’s based upon overcharging families for vital medication.

Ms. Bresch has a long history of questionable business practices and personal ethical issues. See the following articles for more details about this: “Despite critics of corporate pay, perks persist” and “Who Benefits? – Rising Generic Drug Prices and the Case of Mylan’s Conflicted Property Purchases

So what’s your family going to do?

Something needs to change, and soon, or we’re going to be hearing about children going into anaphylaxis with no EpiPen nearby because the family couldn’t afford to purchase a 2-Pak.

 

 

 

 

 

 

Food Allergy Awareness Week 2016 Follow Up

It’s amazing how much more food allergy awareness there is in 2016 than there was in 1996 when my son had his first reaction – a contact one at that – to peanuts! Twenty years makes so much difference, yet there is still a long way to go.

Christmas 1996

Rare is there a preschool that doesn’t have some awareness of food allergies; however, there are so many colleges that need to be educated. Day cares have protocols for children with food allergies, yet employers don’t have any idea what’s coming as our children age and need special accommodations in the workplace!

And don’t get me started on discussing airlines and their needs to serve peanuts, or warm nuts in First Class! We still have a long way to go to create more awareness of our children’s needs and civil rights.

There have been several key items that have occurred in the last 20 years. The main item was the Food Allergen Labeling and Consumer Protection Act which was passed in 2004 and became law on January 1, 2006. The top 8 food allergens must be labeled in words a child can understand as a result of this law. It is so much easier than it used to be to know if a product is safe.

There has also been the American with Disabilities Act Amendments of 2008 which defined eating as a major life activity, and therefore paved the way for life threatening food allergies to be considered a disability.

There is now an abundance of ongoing research occurring to find a cure for food allergies. When my son was little, there was nothing, and very little funding for research. The only “cure” was complete avoidance of the offending food.

I’m convinced that in the next 20 years, there will no doubt be a cure. In the meantime, living with food allergies is not as lonely as it used to be – sadly, there are so many more children being diagnosed each day. And the Internet has definitely made the food allergy world bond and be able to reach out to more families.

AllergicChild has been online since January 2000. We’ve been sharing our family’s experience of traveling, sending our son to school, and basically every aspect of our lives as it relates to food allergies. My son, Morgan, has detailed his life since he was 9 years old for the AllergicChild audience.

Morgan & Friends April 2016

In honor of this year’s Food Allergy Awareness Week, my son Morgan created a new website and blog, Morgan’s New Corner.  I’ve been hoping that he would create something like this for years! What better way to create food allergy awareness than to have personal experience shared by someone “living the dream”! (For those of you who have heard Curtis Zimmerman at FAAN and FAACT Teen conferences, you will understand this reference!)

What he has put together is even more wonderful than what I could have imagined. It’s one thing to be a parent of a child with food allergies; it’s an entirely different experience to be the child, the preteen/teenager, and now the college student managing this vigilant lifestyle.

Morgan has shared his personal experience about preparing for trips alone and with school groups, about college and what it took to find the right school. He also shares all his writing from the age of 9 through the present, and how food allergies have affected his life. I encourage you to visit his website. You will see that your child has an amazing future ahead!

Thank you for all your support and encouragement through the years. One day, when we have a cure, we won’t need Food Allergy Awareness Week. In the meantime, let’s continue to trudge this road and support one another!

 

The Trials & Joys of Finding an Off-Campus Apartment in College

My son, Morgan, has been living on campus for two school years, which is required at the University of Denver. We did a lot of work in preparing the cafeteria and his roommates through the years to properly address his allergens and safety-zone needs. If you’d like to read two of the blog posts we have written about preparation, please read, THE FIRST QUARTER OF COLLEGE BY MORGAN SMITH and STARTING COLLEGE – WE’VE WORKED TOWARD THIS GOAL FOREVER!

Now, it’s time for Morgan to move off-campus for his Junior and Senior year. He will be studying abroad for the Fall 2016 quarter in the UK at the University of Lancaster; however, waiting until he returns in December to find a place to live will likely yield him no safe place! Therefore, time is of the essence now, 9 months in advance, to secure housing.

We have lived in our family home for over 22 years. We have ensured that the home is allergy-safe for Morgan. We put in tile floors years ago, and added Air Conditioning, which many people do not have in Colorado. We have HEPA filters on the furnace, and have no pets. Basically, our home is and has been a safe haven for Morgan, and it was the only home he lived in prior to going to college.

I hear from many parents who assume that living off-campus in an apartment is easier for food allergic students than living on campus in a dormitory. That may be true in some cities; however, Denver is seeing a population explosion and rentals are scarce and over-priced. For Morgan, living in a dorm and eating in the cafeteria has worked extremely well, especially since DU Dining Services are well-versed on food allergies. And, on-campus housing is cheaper than any off-campus apartment or shared home.

DU housing

Food allergies are just one part of the equation for Morgan. He also has mild asthma and pet allergies. Therefore, he has to find a place to live that has central air conditioning, no pets, no smoking, with roommates willing to not eat his allergens, AND come in at a price that’s below his scholarship stipend! That is a difficult combination!

He immediately was able to find the roommates he wanted to live with, and had a discussion about his food allergies to ensure they were okay with his needs. With that hurdle jumped, the real issue began – Denver is big on dogs. And many college students have pets, so about 85% of the available houses and apartments allow for pets in the DU neighborhood. Of the 15% remaining, most do not have air conditioning! That narrowed his selection of available apartments to about 3 buildings.

Thankfully, he started early and has just signed a lease with three other young men to live in a 4-bedroom apartment that has AC, no pets, and no smoking. These transitions are difficult for this Mama to stomach; however, I know that Morgan is making wise decisions of who to live with, and I’m hopeful that this apartment lives up to its promises!

A Robot for High School, And She’s Now in College!

Many of you may remember a previous interview I did with Lauren, a 14 year old high school girl who had a robot for high school because of her inhalant dairy allergy. If you haven’t read our blog post, INHALANT DAIRY ALLERGIES & A CREATIVE SOLUTION – A ROBOT! – you can do so here.

Lauren is now in college at the University of Northern Colorado, and I wanted to interview her, and her mother Melissa, about her experience through the rest of high school. Also, I wanted to see how she is managing in college without having a robot!

Lauren

Lauren – you were 14 years old when we last interviewed you. How was the rest of high school for you with your dairy allergy? Did you continue to have a robot go to school for you?

The rest of high school was amazing! After using the V-go, my friend had told me about a charter school that was able to accommodate my food allergy. They even banned pizza, and implemented a desk cleaning before each class at the school for me! Everyone was so accepting of my allergy. I still stayed away from food areas and washed my hands often. Except for the occasional hives from dairy contamination, I had no severe reactions while I attended.

Were there any more instances of anaphylaxis during your years in high school?

Not while I was actually at the high school, but during the summer of my junior year I had a really bad one at a women’s retreat that I went to with my mom. There was a miscommunication with the staff that tried accommodating me in terms of food at the camp. I had accidentally eaten a piece of bread with dairy in it. It was a very scary ordeal, considering we were in the mountains & the response time up there is a little longer. I was scared and not sure what was going to happen but after 5 hours, 3 Epipens, 14 times trying to find a place for an IV, 2 Inter muscular injections, a breathing treatment, and lots of prayers the doctors stabilized me! Now I am much more careful and I always make sure my food is extra safe!

How did you prepare for going to college at the University of Northern Colorado?

I set up an appointment to meet with disability services at my school. They were absolutely phenomenal with working with us to make UNC a safe place for me to go. They got me an on campus house where I have a separate, safe apartment. I also took the time to talk to my professors about my allergy.

What made you choose UNC?

I chose UNC because I wanted to go away to college but I knew I really needed to be close to home in case I had a reaction. UNC was a perfect choice because it was only an hour away from my parent’s house. Additionally it had the major I was interested in. Plus, it’s awesome to see family and not have to cook your own food on the weekends!

What is your current living situation at school? How do you ensure that you don’t get near dairy?

I am in a house with a self-contained apartment on campus, I have other girls who live in the same house with me but they are on a totally different side. When I first moved in, I made them all aware of my anaphylaxis, and the severity of it. They are awesome and completely understand the seriousness of my allergy. Whenever I want to hangout in the main house, they make sure to not cook using dairy and they clean the house for me! Two of the girls are from Colorado and two are from Germany, and all have been so supportive and amazing to me, and they are actually some of my best friends now.

What are you planning on majoring in academically?

I am studying Audiology and Speech pathology and I love it! It’ll definitely be awesome to help people with hearing and balance issues one day as an Audiologist.

Have you been able to have a summer job? If so, what “food threats” have you run into with working?

In the past I have lifeguarded during the summer. It was actually a very good fit for me! I have never had a reaction at the pool, and I carry a protective mask in case I ever have to perform CPR. I also talked to my boss about my situation and I let her know that my safety is just as important as the patrons I am guarding, since in order to keep them safe I have to keep myself safe. During my time guarding, there were food parties but I didn’t have to worry about it because the guests couldn’t bring the food near or in the pool. It was definitely an awesome job!

Melissa – when we last interviewed you, Lauren was participating in Dr. Li’s Traditional Chinese Medicine (TCM). Did this treatment help Lauren at all?

Lauren is still taking the herbs. When we started the herbs we simply wanted her to be able to go inside school or the grocery store without having a severe reaction, since there was a time before the treatment that it became impossible to be inside places where food was being warmed up because her body seemed to be even more hyper sensitive then usual. We think this treatment might have helped, since (unlike before the herbs) she has been able to be inside schools, food establishments and other public places without her throat immediately closing. She has no reaction when we simply walk past a pizza place anymore (where as before she would react)

Still, if the dairy is being cooked close enough, she does still react. But at least we are headed in the right direction.

What accommodations did you and Lauren request for her in college?

We asked for them to find a place for her that would be safe from dairy. This was quite the challenge, since we live in a dairy filled world. They came up with a self-contained apartment on campus. Separate from the rest of the house. She is able to cook for herself & steers clear of any areas where pizza or food is served. This has been enough to keep her safe at school.

It was very difficult for me to pass the baton of “health watch” over to my son when he went to college. How have you been able to do that with Lauren’s severe dairy allergy?

Passing the “health watch” baton over to Lauren has to be one of the scariest experiences that we STILL struggle with daily. The good news is that since she’s been gone, she has proven herself to be a good self advocate in keeping herself safe. She did have two anaphylactic episodes since she’s been away (one could have been avoided with better diligence but the other could not) Lauren was in fact able to treat herself immediately with her epinephrine and called 911 for help. Her fast response is always critical in her outcome, and she is well aware of that, she also knows that her body keeps needing more epinephrine after the first one or two shots wear off. For me the scary part lies with the ambulance, and hospital personnel, who seem unaware sometimes how fast her reactions or biphasic reactions change in the blink of an eye. It’s paralyzing for us to think about “what if’s” So this is when we had to put our trust in Lauren & ask God to take over, so we wouldn’t lock her inside our house and never let her out.

Thank you Melissa & Lauren for inspiring hope in all of us!

Mylan and Disney new Show-and-Tell Scout book

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I received an email today telling me about the new Mylan and Disney digital book, “Show-and-Tell Scout”. The email went on to state, “Mylan and Disney are excited to announce the launch of the “Show-and-Tell Scout” digital book, an educational storybook aimed at raising awareness about anaphylaxis (a life-threatening allergic reaction) in the school setting. An estimated one in 13 children in the U.S. lives with a food allergy, putting them at an increased risk for anaphylaxis. Because anaphylaxis can occur anywhere and at any time, it’s important to educate all families about food allergies – even those not managing a food allergy at home.

“Show-and-Tell Scout” follows the story of Scout, a young fox living with potentially life-threatening (severe) allergies to milk and peanuts. We learn about his severe allergies and the importance of being ready to respond should he experience anaphylaxis.

The “Show-and-Tell Scout” digital book is available exclusively on, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents.  The “Show-and-Tell Scout” digital book is available exclusively on MyAllergyKingdom.com, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents.”

I think this is a great idea for these two companies to combine efforts to put out information on food allergies. However, there is a lot of information that I don’t agree with in the text of this book.

Here is the email I sent to the team that emailed me: “Thank you for forwarding the book to me. It’s exciting that Disney and Mylan are launching this book.

I wonder if there’s a possibility of changing the language in this book prior to releasing it to everyone? There are several items in the book that just aren’t correct:

On the page about Mrs. Fox telling the teacher on the first day of school about Scout’s allergies – based upon our experience and thousands of others – no teacher wants to hear about allergies on the first day of school. For the success of a child with food allergies at school, it is ALWAYS recommended to have such discussions months in advance of the school year starting.

Secondly, no parent is going to be allowed to train a teacher how to administer an epinephrine autoinjector. In every public school, it will be the responsibility of the school nurse to do this type of training. I believe it is required by law in our state of Colorado.

This is a somewhat detailed point, however any child who accidentally eats one of their allergens would never walk to the nurse’s office. The nurse would bring the epinephrine autoinjector to the child. It is dangerous for a child in anaphylaxis, or where anaphylaxis is a potential, to remain upright and walking.

Other items that I noticed, and that I believe other food allergy families would notice, is that Scout is sitting with children eating his allergens. This can be a dangerous practice, especially for young children who spill food, and for those exquisitely sensitive to their allergens.

Lastly, many children with severe food allergies will have a 504 Plan in addition to a severe allergy action plan. Of course, this plan would only be available in public schools, but might be worth a mention in the back of the book.”

While I believe the intent of the book is good; I’m not supporting the book as it is currently written. I’m hopeful that an edit will be forthcoming soon.

 

 

Where to Donate Your Money Toward Food Allergy Research

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As a follow up to my recent blog post, FOLLOW THE MONEY: WHERE IS YOUR DONATION TO A FOOD ALLERGY NON-PROFIT GOING? I’d like to make a  few suggestions about donating directly to research for a cure for food allergies.

Many readers suggested that I look into EAT – End Allergies Together – a new non-profit focused solely on funding research, and promising that 100% of net proceeds will go to research. I have communicated with the founders, Kimberly Hall and Elise Bates, via email and was told that they will inevitably have some expenses as they go forward for staffing, etc. and they still promise that at least 80 cents of every dollar will go toward funding research. That is a phenomenal percentage, and well worth looking into if you want to fund food allergy research. Below are their Food Allergy Research Areas. You can make a request for a specific area, such as gut bacteria, for your donation to fund.

1. Food Desensitization
e.g., oral immunotherapy, sublingual immunotherapy, transdermal patch therapy

2. Medication Treatments
e.g., XOLAIR (Omalizumab), herbal formulas

3. Basic Science (root cause)
e.g., genetics, T-cell immune response, gut bacteria

I recently wrote about the DBV Technologies Epicutaneous Immunotherapy “Peanut Patch” in my blog post, FOOD ALLERGY RESEARCH & THE PATCH. While DBV does not allow individuals or non-profit food allergy groups to donate to their research, it is available for you/your child to participate in a research study. Information about this participation is detailed in the blog post.

I also recently wrote about Traditional Chinese Medicine in my blog post, FOOD ALLERGY RESEARCH & TRADITIONAL CHINESE MEDICINE. Dr. Xiu-Min Li is the only doctor researcher in the USA practicing both Traditional Chinese Medicine, although her work is confined to immune conditions such as allergies, not the full range treated by other herbalists and acupuncturists, and doing research on TCM to cure food allergies, eczema, asthma, etc. There is information in this blog post about donating directly to her research.

Lastly, some people choose to donate their time and expense to research by becoming involved in a research study. This is a great way to donate to food allergy research. Of course, there are always medical risks with any research participation such as anaphylaxis, eosinophilic esophagitis or other immune system issues. You and your family will have to decide what level of risk you are willing to undertake. There may also be travel costs in order to check in with a doctor on a regular basis. If you’re interested in participating with a research study, ask your allergist whether you and/or your child is a good fit. Many research studies have qualifying criteria to become a part of the study. You can find current research studies at https://www.clinicaltrials.gov/

 

 

 

 

 

 

 

Food Allergy Research & Traditional Chinese Medicine

As Albert Einstein stated, “No problem can be solved from the same level of consciousness that created it.” Therefore, I’d like to present researched treatment which corrects many of the behaviors in the immune system that cause allergies – – Traditional Chinese Medicine (TCM.) And, in my opinion, it has the best chance to truly CURE food allergies.

I recently wrote a blog post about TCM, “TRADITIONAL CHINESE MEDICINE: THE “CURE” FOR FOOD ALLERGIES?” wherein Henry Ehrlich details information from his book, “Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure“. Henry’s new book, Traditional Chinese Medicine, Western Science, and the Fight Against Allergic Disease, will be released in May 2016.

I have been a patient in Dr. Li’s private practice and am currently using a TCM cream to lower the inflammation in my body to help heal my Eosinophilic Esophagitis and Mast Cell Disorder. I am thrilled with the results so far, and have seen a much higher level of energy for myself and less medication needed to manage my symptoms.

Dr. Xiu-Min Li is the only doctor in the US practicing both Traditional Chinese Medicine, although her work is confined to immune conditions such as allergies, not the full range treated by other herbalists and acupuncturists, and doing research on TCM to cure food allergies, eczema, asthma, etc.

Dr. Li has been involved in the medical field since the late 1970’s when she got an MD in both Chinese and Western medicine at a Chinese medical school in Zhengzhou, China. She went on to study integrative clinical pediatric immunology in Beijing, and then clinical immunology at Johns Hopkins Medical School in the US. It was here that she worked with Dr. Hugh Sampson, a foremost food allergy researcher. Dr. Sampson’s support of Dr. Li’s research has been key in moving it forward.Dr Li&Sampson

It is the combination of her knowledge of Chinese medicine and the Western medicine of allergy and immunology that is creating groundbreaking research toward curing food allergies.

There have been multiple research reports regarding Dr. Li’s research in the Journal of Allergy & Clinical Immunology. You can see a partial list of her research here.

In addition to her research, Dr. Li has a private practice with patients, infant to adult, using creams, herbs, and teas, in combination or individually, depending upon the specific allergic issues that are presented. With my sensitive gut, I was not able to tolerate swallowing any teas at first. Therefore I am using a cream, which I apply to my entire body daily. I laugh when I tell people that I am like the witch Elphaba from Wicked – an entire body of green! I will soon graduate to soaking in herbs and then swallowing the tea.

Since my experience with Dr. Li’s protocol is more recent, I’ve interviewed two Moms, Selena Bluntzer and Deirdre Olsen, who discuss why they chose Chinese Herbal Medicine treatment and their daughter’s progress under Dr. Li’s care:

Selena, What made you and your child choose to pursue treatment with Dr. Xiu-Min Li?

My daughter has multiple food allergies, asthma, and eczema. I had researched various treatment options for years, and after a friend of mine made plans to have her children see Dr. Li, I realized it could actually be a reality for us, as well. We live in Texas, so it wasn’t an obvious thought for me to pursue treatment so far away. However, Dr. Li’s research and treatments had been the only ones that gave me a real sense of a possible future cure. There is no other researcher/practitioner in this space, to my knowledge, whose work encompasses the “whole condition” – addressing all of the stages of the “allergic march” – eczema, asthma, allergic rhinitis, food allergies, etc.

Morgan Bluntzer & Dr Li

My daughter sees Dr. Li in her private practice clinic, which she manages independently of her work at Mt. Sinai. While Dr. Li is a researcher at Mt. Sinai and manages a full scale lab plus a production site for her medicine, she is also the only food allergy researcher that has a clinical practice. Patient data from her clinical care is used to fuel her research endeavors, the same way that other researchers use the findings from their closed clinical studies. She is constantly innovating and refining her numerous treatments. She is able to treat her patients as patients, not as study participants, so she can improve her medicine as she helps us. We are definitely receiving personalized medicine, as our protocol is tailored to my daughter’s specific needs. My daughter likes and trusts Dr. Li, which really helps with the treatment process.

Deirdre, What made you and your child want to participate in the Chinese Medicine research?

Our daughter (now 13) was diagnosed by 24 months with severe food allergies, eczema and asthma. It was very overwhelming. We were constantly going to the dermatologist and pediatrician to keep her skin and lungs under control.

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We live in NYC and after seeing a number of dermatologists and allergists we finally met Dr. Paul Ehrlich. During a visit after another skin flare up, he looked at my husband and I and said, “I really would like you to consider seeing Dr. Xiu-Min Li.”  We were in a vicious circle of flare up, steroid cream, calm, then it would start all over again. Jaclyn had allergic dark circles under her eyes, and her skin as well as her entire immune system was always “on alert” ready to attack. We spent many years like this.

We met with Dr. Li for two hours on the first visit. We took copious notes and hung on every word she said- and still do! Our daughter (then 9) took to Dr. Li who has a sweet, patient and loving demeanor. After spending so much time with us, we decided to start TCM with Dr. Li.

When did Jaclyn begin using TCM?

Jaclyn started 5 years ago and has had amazing results. Her quality of life has increased immensely. Her once off the charts IgE at 6600 is now hovering just below 800. She is able to eat a number of foods that she couldn’t 5 years ago. She is cleared for food challenges to egg, hazelnut, coconut and brazil nut in the upcoming months.  She rarely, if ever, needs a puffer. She rarely gets sick now. Her skin is clear and smooth for 4 1/2 years.

Has Jaclyn had any type of reaction?

Jaclyn has not had any adverse reaction to the herbs. A few times she felt nauseous after a bath or starting a new capsule. In this case we contacted Dr. Li and she dialed back the dose or eliminated it.

Have you noticed any decrease in reactions to her allergens? Or any changes in overall health?

Jaclyn had contact eczema. Everywhere we went we put down a towel or sheet so she would not break out. We have not done this in 4 1/2 years.  Where she used to get 4 colds a winter, she is down to 1 a season now.  Jaclyn’s seasonal allergies are also much better. She still is allergic to a number of trees and pollen but no where near where she was.

Jaclyn’s overall health is much better. She is rarely sick. She eats well and is comfortable in her own skin.

Thanks Selena and Deirdre for sharing your experience!

If you’re interested in learning more about Traditional Chinese Medicine, please check out the TCM website here. There is also a Facebook page, Chinese Herbs for Allergies for anyone interested in the TCM treatments.

Lastly, if you would like to find out more about Dr. Li’s specific programs and studies currently open to funding, you can speak to either: Susan Weissman, a parent of a patient who volunteers her time as her fundraising coordinator. You can reach her at Susan@SusanWeissman.com; or Erica Edwards at Mount Sinai who can be reached by phone at: 212-659-8500.

For those of you ready to donate to find a cure for food allergies, you can support Dr. Li’s research at Mt. Sinai by making a check payable to the Icahn School of Medicine at Mount Sinai.

In the memo portion, make sure to write Dr. Li – Chinese Medicine for Food in Jaffe

Mail check to the following address:
The Mount Sinai Development Office
Attn: Erica Edwards
One Gustave L. Levy Place, Box 1049
New York, NY 10029-6574

 

 

Food Allergy Research & the Patch

I’ve been in search of great food allergy research, and where a donation would best be utilized to find a cure for food allergies, after writing my recent blog post, FOLLOW THE MONEY: WHERE IS YOUR DONATION TO A FOOD ALLERGY NON-PROFIT GOING?

In my quest, I came upon the company DBV Technologies. DBV is the company performing research on the Viaskin electrostatic patch, which administers an allergen directly on the skin.

I spoke with Susanna Mesa, DBV Technologies Vice President of Finance, Investor Relations & Strategy. I inquired whether an individual could donate to the research and was told that DBV does not take donations from any individual nor any food allergy non-profit. They want for their research to be completely free of any influence or desire for specific results. Therefore, the best way to support this type of research is to get involved in a research study. (More info on that below). Our discussion was so compelling that I wanted to pass on the information about their product.

As their website states, “DBV Technologies believes EPIT® (Epicutaneous Immunotherapy) has the potential to provide all of the intended benefits of a disease-modifying treatment in allergy, while avoiding severe or life-threatening allergic reactions.” In fact, there have been no systemic reactions to their product by any patient in their 10 years of research. Since the patch is applied to the skin, there have been mild topical reactions which usually decrease within a few weeks of wearing the patch.

DBV monitors patients involved in their research for 3 years. After the first year of wearing the patch, protection from anaphylaxis, in case of accidental exposure, has been seen to occur. Research has shown that those wearing the patch for longer periods of time, such as 24 months, have been able to consume more of their allergen without a severe adverse event. Patients do still carry an EpiPen, but they are able to travel and eat more comfortably. Additionally, if a patient removes the patch, there isn’t an immediate re-sensitization to the allergen within the first day.

As of November 1, 2015, renowned food allergy researcher, Dr. Hugh Sampson, became the Chief Scientific Officer of DBV. You can read the press release here.

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The design of the patch has also taken into consideration the caregiver. I asked Lianne Mandelbaum of No Nut Traveler a few questions about her experience with her son, Joshua, who is involved in the peanut patch study.

What made you and your son want to participate in the Viaskin research? 

I always had 2 allergists for Josh – one local in NJ and one at Mt Sinai because I always wanted Josh in a clinical study (as it seemed the allure of a cure was so far off) and Mt Sinai was always conducting studies.  But to be honest, our bad airline experience with United (the one that spurred me to launch NoNutTraveler) made me even more determined to get him in a study.  The experience really shook me to my core, thinking his allergy could potentially dictate his future life choices.  For example, he is a great tennis player and is starting to really compete and at some point he will need to fly to tournaments (and Jet Blue does not fly everywhere).

I was that mom constantly calling Mt Sinai to check if there was a study he was eligible for.  I had also started researching private practice OIT and Chinese herbs, but then we got the call for the patch study, and it was a no brainer to say yes.  I read all the studies in Europe on the patch and there were no life threatening reactions due to treatment (which was always a fear of mine).  Plus, if you got the placebo, after a year you got treatment at a higher dose patch , so I felt it was worth it even if we had the placebo to start.  I felt we could always try the other options but this was a really great opportunity for him.

Which research study is he a part of? 

He is part of CoFAR6 Peanut Epit- out of Mt Sinai NYC.

When did your son begin wearing the Viaskin Peanut Patch? 

He started wearing it a little over 2 years ago.

Has he had any type of reaction? 

His only reactions are hives at the site of patch which continues today although they are less angry looking.

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Have you noticed any decrease in reactions to peanuts? 

He had a reaction at 1/8 of a peanut at the oral challenge to enter the study. After a year he did go into anaphylaxis at his challenge but it was at 2 peanuts- a huge difference.

About 7 weeks ago he had a decrease in his peanut allergy skin prick test. This is the first decrease in 8 years and it was a big decrease- we are so hopeful as to what it means.

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Our final challenge is at 2 years 6 months in May and we are hopeful but also cognizant that 2 years 6 months may not be enough time and hope to get more patches if that is the case.

Being in a study has empowered Joshua.  He feels he is doing something that has the potential to really help other kids with peanut allergy.  I believe he feels this is a way to “fight” the allergy.  I am also grateful he went into anaphylaxis after year one, yes you heard that right – I am grateful.  Josh had not had anaphylaxis since he was 2, and he did not remember what it felt like.  He not only knows what it feels like now. He saw how quickly the Epi saved him and he is vigilant about carrying it.

Thanks Lianne for sharing your experience!

DBV is currently recruiting for three different clinical trials: peanut, egg, and EoE. More information about each of these trials is available here.

The PEPITES (Peanut EPIT® Efficacy and Safety Studyis the first food allergy research to reach a Phase III trial with the FDA (Food & Drug Administration) in the US. It will be a randomized, double-blind, placebo-controlled trial designed to assess the efficacy and safety of Viaskin Peanut in approximately 330 pediatric patients in around 30 centers in North America (United States and Canada), Australia and Europe, according to the DBV Technologies website. This is very exciting!

I’m very hopeful that the “Peanut Patch” will yield promising results toward research for a cure for food allergies!

Food Allergy Patient Checklist for Allergists & Pediatricians

I have recently begun speaking with local Colorado Springs, Colorado Allergists and their staff regarding the large number of teens and young adults who have died from anaphylaxis.

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I wrote an article for Allergic Living, Teens Speak Up About Averting Food Allergy Tragedies, which showed me that too many teens aren’t taking the precautions necessary to keep themselves safe; however, the teens did state that they listen to their parents and their doctors about food allergy information.

In Dr. Ruchi Gupta’s newest survey of parents, which she titled, Parents in dark about using epinephrine for kids’ food allergies, she found that “Less than 70 percent of parents recalled their allergists explaining when to use epinephrine and less than 40 percent said the same of their pediatricians.” Therefore, I question whether teens and young adults are getting good information from their parents.

Therefore, I felt it was time to bring this information to the attention of allergists in my area.

Here is the checklist I’ve suggested for allergists to discuss with parents, kids, teens and young adults who have food allergies, EVERY TIME they see the patient. Similar to an asthma checklist, which my son completes each time he sees our allergist, this checklist would be given to the patient to complete and review the gaps in behavior that could potentially create a life threatening situation.

FA checklist for doctors to use with teens

A PDF version of this checklist is available here.

From what I’ve found, allergists in my area are not currently reviewing these items with their food allergy patients. In an educated patient, the checklist could be reviewed quickly and rewarded with a high-five or fist bump! In patients who need more awareness, the allergist can remind the parent and child/teen or young adult which behaviors are risky and where to make changes.

If a food allergy patient isn’t seen but once a year to get an EpiPen prescription refilled, then it is especially important for the physician to review these questions to ensure safety. I’m convinced this would begin to educate the patients and parents who so desperately need to hear from their doctors how to practice vigilance.

Please FEEL FREE to share this with your allergist and/or pediatrician and help to save a life!

Follow the Money: Where is your donation to a Food Allergy Non-Profit going?

I have been a member and/or officer of several food allergy related non-profit groups for almost 20 years. I have the hope that when I send an organization my hard-earned money, they will be good stewards of my donation.

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My review of four food allergy organizations showed me that salaries and operational expenses take up a large part of the revenue stream of many food allergy non-profit groups. As a percentage of income, only one organization is giving away large amounts of money toward research – in fact it’s 64% of their revenue! Read on for what may change the way you contribute to food allergy organizations.

First a disclaimer – I am not a Certified Public Accountant. I majored in Finance, and have a Bachelor of Business Administration from The George Washington University. I continue to work in the field of finance providing financial management to several businesses, in addition to my work with AllergicChild.com.

The 990 is just one avenue to glean information about a non-profit. Utilizing Guidestar.org and Charity Navigator can provide additional information in your search for the best organization to donate money, in addition to annual reports of the organization and information from their website.

I reviewed the 2013 and 2014 Form 990’s  – the form required for a Non-Profit organization to file with the IRS – for FARE (Food Allergy Research & Education), APFED (American Partnership for Eosinophilic Disorders), KWFA (Kids with Food Allergies Foundation) and AAFA (Asthma and Allergy Foundation of America Inc). FAACT (Food Allergy & Anaphylaxis Connection Team) wasn’t yet in existence in 2013, and therefore didn’t have to file paperwork, however they did file in 2014. KWFA was merged into AAFA on July 22, 2013, however both organizations did file 990’s in that year; and the combination of the two organizations didn’t significantly change the percentages that I will report on.

FARE – Food Allergy Research & Education

FARE’s mission, as stated on their website, is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments.

FARE is the largest food allergy non-profit organization with $15.5 million in total revenue in 2013. They spent 35% of this, or $5.5 million on salaries and employee benefits. Then CEO, John Lehr, received a total of $341,968 in salary and other benefits. There were 8 other key employees listed with salaries above $100,000; and a total of 72 people employed in calendar year 2013. They gave $2.1 million (or 13% of income) in grants. The largest single grant was for $825,423 to Mt Sinai School of Medicine for “Food Allergy Programs”. The only grant listed for “Research” was $122,070 to Stanford University School of Medicine. FARE was the only organization with investments or other securities listed on their 990. They listed 2,982,570 shares in “ARC” which is Allergen Research Corporation, which develops desensitization treatments for food allergies. These shares have a book value of $2.4 million. Charity Navigator gives FARE four stars overall, but only 3 stars for “financial”.

FARE’s 2014 Form 990 was just released showing a decrease of annual income to a little under $13 million. They spent 47% of their income, or a little over $6 million, on salaries and other benefits of their employees. James Baker Jr. was the CEO from 8/1/14, and made $208,151 for 5 months until the end of 2014. There were an additional 9 employees receiving salaries above $100,000 for 2014, and a total of 81 employees during the year. There is no mention of the shares of ARC on the 2014 990 except that “Investments-other securities” now show a value of $150,505.

In 2014, FARE gave only $1.4 million away in grants: a paltry 10% of their gross income. “Research” was indicated in over $1 million of the grants. Charity Navigator has not updated their rating for the year end 2014.

AAFA – Asthma and Allergy Foundation of America

AAFA’s mission, as stated on their website, is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research.

AAFA was the next largest organization with $3.7 million in revenue in 2013. They spent $1.6 million (43%) in salaries in 2013. William McLin, President and CEO, made $274,251 in salary and other benefits. They had 2 other key employees with a salary over $100,000, and a total of 17 employees. They gave $161,500 (4%) in grants. The largest grant was $60,000. This same amount went toward “Biomedical research” to both Massachusetts General Hospital and to the University of Iowa.  I will include KWFA here because of the merger with AAFA. KWFA had $229,566 in revenue with $102,372 (44%) going toward salaries.  In 2013, there were no employees listed. Charity Navigator gives AAFA 4 stars overall.

In 2014, AAFA made $3.5 million and spent $1.9 million (54%) on salaries. Cary Sennett is the new CEO as of June 2014, and made $149,303 for that partial year. There are now 3 other key employees with a salary over $100,000, and a total of 26 employees. They gave $100,000 (2%) in the form of 3 separate grants – all for “Biomedical research.”

APFED – American Partnership for Eosinophilic Disorders

APFED’s mission, as stated on their website: To passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.

APFED was by far the best steward of its funds in 2013. With $638,083 of total revenue; they spent only $56,549 (or 8%) on salaries. Additionally, they gave away $311,990 (48%!) in cash grants. Their largest single grant was for $100,000 to Children’s Hospital of Philadelphia for research. They listed 5 employees for 2013. APFED is not rated by Charity Navigator.

In 2014, APFED made $451,942 in total revenue; spent $93,393 (20%) on salaries, had a total of 4 employees, and gave away $290,000 (64%!!) on grants; the largest of which was for $70,000 to ARTrust. Once again, APFED was the best steward of funds in 2014.

FAACT – Food Allergy & Anaphylaxis Connection Team

FAACT’s mission, as stated on their website, is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis.

FAACT filed a 990  in 2014 and their total revenue was almost $136,000. They paid $10,637 in salaries, or 7%. There were no grants listed.

Summary: For the almost 17 million dollars given to these organizations in 2014, there is a little less than $1.8 million given in grants – and some of this is going toward educational grants and not toward research. The question becomes – do you believe in the mission of the organization? The vast amount of money is clearly NOT going toward research for a cure? Are you being helped by the conferences the organization provides; the educational webinars; and the lobbying efforts? Then send in a donation! However, if you thought your monetary donation was primarily going toward finding a cure for food allergies, I’d suggest finding somewhere else to donate!

 

 

When a College Takes on Food Allergies!

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My son, Morgan, is currently a sophomore at the University of Denver (DU). DU is a private university in the heart of Denver, with approximately 5000 undergraduate students.The school requires that all students live on campus for two years, which sounded impossible when managing food allergies. Yet we tried to be open minded when we first visited the campus. After touring the school, meeting with the Dining hall chefs and with the Housing office – we determined it was going to be not only safe, but great!

DU has been wonderful with accommodating students with food allergies; however their website doesn’t have very much information about the wonderful things that they do. We found out how great they were back in 2008 when our daughter, Michaela, (who has celiac disease and a mast cell disorder) attended a music camp for two weeks during the summer. The chefs prepared her meals based upon a list of safe brands of foods and menus that we provided prior to the beginning of the camp. Each meal was safely prepared for her, and it convinced us that this was THE school for food allergy students!

I recently spent 90 minutes in a meeting discussing food allergies and how it impacts students at DU with the Vice Chancellor of Campus Life, Dr. Lili Rodriguez, Dining Services Resident District Manager, Ira Simon, and the DU Communications Director, Elise Chester (who has a two year old son with severe peanut allergies!) I wanted to encourage them to provide the details of how amazing they are on their website. The meeting proved to me that they are totally ready to take on the topic of food allergies on campus.

Here’s some of the takeaways from the meeting:

After Morgan chose to attend DU, he emailed Ira Simon to request a meeting to discuss his food needs. Ira set up the meeting to include all the chefs that worked at all the residence halls on campus. That way Morgan would feel safe eating anywhere on campus. I attended this meeting along with Morgan. We were both very impressed with all the knowledge and willingness the chefs had to provide whatever safe food Morgan needed. A personal meeting with all the chefs on campus is a staple for every student with food allergies, and this personal meeting will now also be part of the campus tour for all families who request it so that they can discuss their child’s specific food allergies with the chefs.

All of the chefs have gone through AllerTrain to be trained on handling food properly to ensure no cross contact, and to be able to properly read labels. You won’t see this information currently on the DU Dining Services website, but this is soon going to be included.

What’s also forthcoming is a request for each student with food needs to quarterly (DU is on the Quarter system) meet with the chefs to review any needs not being met and to share compliments and concerns. This will ensure that the chefs maintain the personal relationship they like to have with each student with food allergies.

DU currently lists the ingredients of every food they serve on their Dining Services website and it’s also listed in their cafeteria. They want to expand the ingredient listings to be available on a smartphone App. Better yet, they hope to be able to have a student input their allergy or allergies and be able to view a menu of safe foods for the upcoming week. Morgan already utilizes the website to click on a menu item to see if any of his allergens (peanuts, tree nuts, sesame, fish or shellfish) is listed as an ingredient. Not all kids are accessing the website currently, which is also fine. The chefs enjoy getting to know the students and what food allergies they are managing.

DU currently offers “Simple Servings”, which are meals free of 7 of the top 8 food allergens, in one of their cafeterias. The only food they do serve is fish. Separate equipment, storage areas, utensils and preparation areas minimize the chance of cross contact in the kitchen.

They have a dietitian on staff to discuss individual nutritional needs of every student, and to manage food allergies, intolerances, diabetes, etc.

DU has been wonderful to Morgan and Dining Services basic motto is “We will provide anything you need to be safe.” That is so comforting as a parent! And this will also be expanded upon on the website in the future.

We also discussed how the University can better identify and manage the huge number of incoming students with food allergies. I was thrilled with how open minded everyone was to discuss better ways to manage students with food allergies, and to provide more information about the University’s current policies to incoming families.

The administrators plan to add the question of “Do you have food allergies?” to the housing request form, which is completed by all admitted students. This will allow the Housing department to match students better to ensure safe dorm living with no food allergens in the room. It will also prepare the Resident Advisor (RA) to be trained on EpiPen administration, and to ensure that other students in that area of the dorm are aware of which foods shouldn’t be eaten. Gathering information from students with food allergies months prior to the start of school will allow DU to share the information with professors too, should accommodations be necessary in the classroom environment.

Of course, any accommodations will need to be approved through the Disability Services Office (DSO) which will also be receiving an update to their area of the website to include food allergies as a potential disability. The DSO paperwork is also slated for an update to include food allergies.

The plan is for all campus staff to be trained on the administration of an EpiPen, including RA’s. Colorado passed a law earlier this year allowing for a Good Samaritan to administer an epinephrine autoinjector, and this law extends to college employees.

One of the housing issues that may impact students with environmental allergies or asthma is “comfort animals” that are brought to college to help calm anxiety issues. Some of these animals are furry friends, similar to service animals. Housing has to place students appropriately in zones so that shared ventilation systems do not cause issues for those with allergies and/or asthma. Again, DU is planning on obtaining this information sooner in the process by asking the question on the Housing application about service or comfort animals.

I’m very hopeful that the DU website and housing application paperwork will be updated by February 2016 to include all of this information for students with food allergies and their families. It’s so exciting to watch a university take on food allergies!

 

 

The Fabulous 2015 Food Allergy Bloggers Conference

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For those of you in attendance, you know what a special weekend we had at the Food Allergy Bloggers Conference in Denver! And for those of you who weren’t there, you were certainly able to keep up with all the activities via social media. We are a talkative bunch on Twitter, Facebook, and every other social media site you can imagine!! The hashtag is #fablogcon if you’d like to catch up on everything that was tweeted.

Robyn O’Brien provided the keynote speech about our food system. She asked the question, “Are we allergic to food or what’s been done to it?” Robyn is a fellow Coloradoan, and we got back 10 years to when her youngest daughter got diagnosed. She has really taken on the food industry, and was a real highlight to my first Bloggers Conference.

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Jenny Sprague, shown here with me, is the organizer and founder of this great conference. She coordinates the entire conference from her home in Maine – and let me tell you that’s a feat in itself. It takes the better part of a year to obtain sponsors, presenters and speakers. And she has the best Expo of any food allergy conference I’ve ever been to. There are so many vendors showing off their new products that it’s easy to get lost for hours learning about new EpiPen cases and “free-from” foods. The swag bags we received were outstanding with samples from numerous vendors.

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We actually received two bags because there were so many products! With my limited diet, my son was SO happy I shared my goody bags with him…he took them back to his dorm to share with numerous friends.

And speaking of Morgan, he and I spoke about College Accommodations for food allergies, along with Jim Long, former senior attorney for the Office of Civil Rights at the Denver branch. Jim is a rock star when it comes to understanding 504 Plans, and being able to mediate a solution for a student with food allergies.

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Morgan also got to meet two wonderful chefs during the conference: Cybele Pascal is a favorite cookbook author in our house! Her lettuce wraps are superb. She and Morgan had a lively conversation about how to reach college students with food allergies. Morgan is a big fan of “Tasty”, a video production of recipes. Sounds like something will be forthcoming out of this!

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and Keith Norman

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Keith’s ability to provide safe foods for so many different dietary needs is amazing. He came in to the Denver Renaissance Hotel and trained their entire staff about cross contact and how to safely feed patrons with food allergies and gluten intolerance. I’m sure the hotel will never be the same – and that’s such a good thing!

So, mark your calendars for next year’s Food Allergy Bloggers Conference. I can’t wait!

The Trials of Eating Out with Food Allergies

Recently, both my son, Morgan, and I have had interesting issues eating out at restaurants.

I have been diagnosed with an eosinophilic disorder, which means that I make my own safe food and bring that to a restaurant when meeting friends. It would be wonderful to be able to eat food prepared by a chef, but currently that isn’t yet a possibility. I eat only organic foods, and I eat just 4 foods currently. It’s certainly not where I hope to be forever, but for now, it’s what my reality is.

My husband and I met friends in Denver, CO at the Vesta Dipping Grill expecting a wonderful dining experience for the three of them ordering food. Their expectations were met; mine however was a little different. While the restaurant claims to be very accommodating to allergies, the assistant manager was less than thrilled with me bringing my own food. In fact, after everyone else’s food was served, he marched over to the table to tell me I was breaking the law! When he commented that if I brought in the food because of a medical condition that would be different. This is when my husband stepped in (I was crawling under the table at this point), and informed him that  yes, it was a medical condition. At that point the manager told me that the next time I come in, I will need a doctor’s note to bring in my own food. This entire interaction took less than 5 minutes, and I was mortified.

I have been bringing my own food into restaurants for literally the last 9 years. This is the first time I’ve had any restaurant employee even make a comment about the food, much less tell me that I’m a law breaker!

I’ve searched high and low through all of Colorado’s Retail Food Establishment Rules and can find nothing that states, “no outside food allowed” in Colorado restaurants.

The more interesting part of this story is that when I shared it with my son, Morgan, he told me about his experience with the same restaurant. He and a friend ate there a few months ago thinking they would be great with his peanut, tree nuts, sesame, fish and shellfish allergies with their 8 different allergy menus.  Instead, his food was served with a dipping sauce filled with sesame seeds. This was after he meticulously discussed his food allergies and gave his Chef Card to the waiter. He is thankfully very careful about checking his food order when he receives it, and he noticed that his food was not safe.  He said he will NEVER eat there again because of this mistake!

Moral of the story – don’t trust a restaurant automatically that says they are allergy aware! Always check your food before taking a bite, and of course always carry your epinephrine.

Update and Follow Up:

My husband, Robert, wrote an email to the owner of Vesta Dipping Grill, Josh Wolkon, explaining our disappointment and embarrassment with our dining experience. Josh followed up with a personal conversation with Robert outlining what they’ve done to change the dining experience for customers like myself who have to bring in food. They utilized our experience for a 2 hour training of all his restaurant employees in his 4 restaurants, and have developed a written, detailed plan for managing outside food brought in because of allergies.

My husband also explained our son’s experience with the sesame seed in the dipping sauce. Josh was very disappointed in this major mistake, and said that this too will be utilized to better train his employees of the seriousness of food allergies.

I’m very impressed that the owner of the restaurant would take his time to speak with my husband, AND to train his employees further. Additionally, we’ve been promised a gift certificate for a future dining experience, which I’m sure will be pleasurable!

 

No more deaths!

This past week has been rough for those of us in the food allergy world. There have been two deaths from anaphylaxis: Andrea Mariano of Canada and Simon Katz of Colorado.

These deaths have hit me hard. Maybe because they both were teens who ‘always carried’ their epinephrine, but didn’t do so on this one occasion – a decision that would change the course of their life. Maybe it’s because Simon Katz lived just one hour from me. Maybe it’s because these deaths were so avoidable.

Regardless, I’ve come to the conclusion that we need to take a stand and say, “NO MORE DEATHS!”

No death

I don’t want any more parents to become advocates in the food allergy world after they’ve endured an unimaginable tragedy. There needs to be a complete change in how the message is given to teenagers to “always carry your epinephrine!

How to go about this?

I’d like to ask Mylan and Sanofi (the makers of EpiPen and Auvi-Q) to fund and lead a campaign, along with national food allergy organizations like FARE, FAACT and Kids With Food Allergies, to get this message out to the following stakeholders:

1) ER doctors – I can’t even count the number of times I’ve heard food allergy families recount the miscommunication they’ve been given from an ER doctor about food allergies and epinephrine auto-injectors. These doctors must be educated to counsel families properly about EpiPens and Auvi-Qs. The devices should never be left in a car glove compartment – it’s criminal for doctors to be giving out this advice!

2) Family Practice doctors and Pediatricians – It’s my belief, based upon my experience, that if a child has a peanut allergy they should be referred to an allergist. An allergist is better able to manage these allergies that research has shown are more likely to cause anaphylaxis. I’ve heard too many families tell me that their child’s peanut allergy isn’t serious enough to warrant an epinephrine auto injector, according to their pediatrician. This makes me cringe and shows that more education is needed for these doctors if they are not going to make a referral.

3) Allergists – My experience has been positive with allergist’s knowledge of epinephrine auto injectors and the need to always carry them. I do see an opportunity for allergists to have more training on how to work with teens to create an agreement on compliance however. Having a doctor empower the teen provides more weight than a parent reminding, “do you have your epinephrine?”

4) Parents/Families – There are many lessons that families need to pass on to their children, who grow into teenagers, with food allergies – always read labels, don’t eat foods that don’t have a label, and always carry your epinephrine. The likelihood is that mistakes will be made. But the one message that parents need to understand from the first day of diagnosis is to never leave home without epinephrine. Yet many parents have not understood this message enough to follow through every day, every time they leave the house. Children watch what we parents do, not what we say. American Express used the tagline “never leave home without it” for years. We need to encourage all families to follow this sage advice! We also need to encourage families to let the school know if your child has food allergies and is to carry epinephrine. Complete the school paperwork, and tell those who need to know to keep your child safe!

5) Teenagers – Today’s teens are immersed in social media. Let’s meet them on Facebook, Twitter, Instagram, Tumblr, etc. with messages about food allergy awareness and carrying their EpiPen/Auvi-Q. Using the technology of their smartphones, we can reach teenagers where they live, to show them it’s cool to have epinephrine with them. If something were “Apple cool”, I’ll bet teenagers would be clamoring to have it! It’s also ‘sick’ to train your friends on allergic reaction symptoms, and ‘dope’ to  train them on EpiPen/Auvi-Q administration.

6) Schools – More and more states are passing legislation to allow for stock epinephrine in schools. Yet if the school isn’t aware of the students who have food allergies, or don’t have it available at school events, it’s not going to be helpful. Schools need to run “Anaphylaxis Drills” to determine if they are prepared for a teen suffering a severe allergic reaction. Many schools don’t know the steps to take for such a drill.

Lastly, I’d like to ask for Sanofi and Mylan to create an epinephrine device that is smaller and more likely to be carried by teenagers. The cost of EpiPens and Auvi-Qs have increased drastically over the last few years. Please take some of those profits to fund new technology in compact, easy to carry auto injectors.

Our teenagers are SO worth it!

Traditional Chinese Medicine: The “Cure” for Food Allergies?

If you haven’t heard of Traditional Chinese Medicine, you’re in for a treat! And if you have, you know that Henry is the author of “Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure”. Henry graciously offered to answer a few questions about this treatment option for eczema, food allergies, mast cells and even Eosinophilic Esophagitis!

Chinese herbs

Henry, what made you interested in writing a book about Dr. Xiu-Min Li’s research regarding Traditional Chinese Medicine (TCM) and her search for a cure for food allergies?

First of all, Nicole, thanks for giving me this opportunity to communicate with your readers. I hope they will find it informative.

The six most obnoxious words in the English language are “as I say in my book” so at the expense of stealing my own thunder…. I met Dr. Li when I went up to her office at Mount Sinai at the suggestion of my cousin and co-author of an earlier book, Dr. Paul Ehrlich, a prominent pediatric allergist. We also had a new website, AsthmaAllergiesChildren.com,  and he told me, “I have been practicing for over 30 years and this is the first thing that sounds new and hopeful to me.” So I met Dr. Li. When she showed me photographs of the dramatic changes her therapy had made on really bad atopic dermatitis, I knew something was up. I mean, these were bleeding, sores on the feet of a ten-year-old girl. Within a few months, the skin was clear and she was painting her nails. I have a daughter. That means something to me.

How is Oral Immunotherapy (OIT) different from TCM?

OIT, like all immunotherapy, works by essentially over-stimulating the part of the immune system that produces allergic antibodies—allergen-specific IgE—by feeding progressively larger doses of the allergen until it can’t keep up with demand, allowing the part that produces tolerogenic antibodies—IgG—to gain the upper hand. Instead of allergen-specific IgE occupying the receptors on mast cells and basophils, IgG starts to occupy them instead. Allergens that once triggered reactions by connecting with IgE on those cells are rendered harmless.

Traditional Chinese medicine as practiced by Dr. Li works on modulating the immune system. There are two kinds of helper cells involved, Th1, which helps fight infections, and Th2, which is associated with allergies. In a normal immune system, IgE is a tiny fraction of IgG. But for various reasons, Th2 and IgE gain a disproportionate share of immune response. Dr. Li’s therapies restore Th1 and Th2 to their natural equilibrium. Oh, and one thing I have to stress is that Dr. Li also treats digestion so that the gut has a better chance of breaking down allergenic proteins before they can be absorbed into the blood stream and find their way to different parts of the body.

Let me add that immunotherapy and TCM are not competitive or mutually exclusive. TCM patients are also receiving OIT, just as they are receiving shots and sub-lingual immunotherapy. There’s no single therapy that will help every patient in the long run.

How long has Traditional Chinese Medicine (TCM) been used by Dr. Li to treat patients for food allergies?

Her private, independent clinic got started to treat recalcitrant eczema while she did more conventional research in her “day job”. However, in the mid-1990s, food allergy mothers she met at a fundraiser for the Jaffe Food Allergy Institute, where she was doing research, upon hearing of her success with eczema, told her their kids’ stories and she was so moved she set out trying to find ways to help, backed by Dr. Hugh Sampson, her boss. It was a very bold move. Dr. Li was trained in both western medicine and TCM. She looked to the classical TCM formulary for answers, and started to find them, starting with a treatment for intestinal parasites. It is important for your readers to understand that while Dr. Li is following all the NIH protocols for her investigational drugs, she is also allowed to use versions of these medicines as supplements in her clinic.

Is she working on having fewer pills to take/teas to drink as part of her protocol?

Yes, Nicole. One of the problems with these treatments is that because they are derived from plants, therapeutic doses require lots and lots for prolonged periods. Compliance is a challenge for all of us, whether we have diabetes, asthma, or even just take a low-dose aspirin (as I’m supposed to do—don’t tell my doctor). Dr. Li works with her own lab and scientists in China to refine the medicines and reduce the burden on patients. Her food allergy herbal formula-2 had a dosage of 10 pills, three times a day for a phase-2 trial. Lots of subjects had trouble. The next trial will use B-FAHF-2–refined with butanol, a form of alcohol—that will take the dose down to six or eight pills a day total. Much easier.

Have there been any patients on TCM long enough to say that their immune system has been remodeled, and they are no longer allergic to foods?

Yes there have, although most of her patients have complex co-morbidities—and it’s a work in progress for many of them. I suggest your readers also check out an article published last year in a Canadian journal about three cases of frequent severe food anaphylaxis to see how dramatic the changes can be.

In a video at last year’s Food Allergy Bloggers Conference, you and Dr. Li were interviewed for a podcast. Dr. Li mentioned using TCM for patients with Mast Cell Activation Disorder (MCAD). Has she had any success with patients with this condition?

In the new book that Dr. Li and I have co-written, there is case of this, also called mast cell activation syndrome. Just so you know, MCAD or MCAS for mast cell activation syndrome is disease in which mast cell degranulation is triggered by all kinds of things, from foods, to exercise, to heat…really lots of things. It didn’t even have a name till 2010 or a practice parameter till 2011. It can be IgE mediated or not. We have one whole chapter in our book devoted to one case of a girl of 14 who suffered for 5 years without a diagnosis even, and almost died. Dr. Anne Maitland, a colleague of Dr. Li’s, is gaining a reputation as an MCAS specialist, and the two of them are doing great work. The case we write about it the book will tug your heart strings.

What about children with Eosinophilic Esophagitis (EoE) – are they able to tolerate the herbs? Have any children been ‘cured’ of their EoE?

The short answers are “yes” and “yes”. In my first book I have a case of a boy who was successfully treated, and according to his mother now has the enviable position of being able to eat pizza every day with his friends. Before he couldn’t tolerate dairy.

Let me add a key point here—all Dr. Li’s treatments are highly individualized. You don’t go in and get the food allergy pill, or the asthma pill, or the EoE pill. You get a combination of things that help with the multiple organ systems that are involved. The herbs overlap, and so do their effects.

And one more critical point: Dr. Li is a full-time scientist and a part-time healer. The scope and ambition of her research is breathtaking. Her chemists and biologists love working for her. A month doesn’t go by when I don’t hear about something new emanating from her lab or suggested by researchers elsewhere who have been following her work.

Tell us about the new book you are writing – when should we expect it? What’s the topic?

Think The Godfather and The Godfather Part 2, where the sequel is as good as the original. This book updates the food allergy research from the last book but also goes into greater detail on ASHMI—anti-asthma herbal medical intervention, which I only wrote about briefly the last time. But it’s huge for people with this condition. It also goes into the atopic dermatitis treatment at length, Crohn’s Disease, MCAS, and some other things. I wrote the first one the way I did because I was learning the science on the fly, but this story is much bigger than any single allergic disease. Dr. Li is getting an award next year from the Future of Health Technology Institute, which is normally very high-tech and where the people obviously see this as very important for the way we understand and treat disease. The new book will be out some time in 2016. After writing two books in three years, don’t expect a third one any time soon, although I know if there is it will be better than Godfather Part 3.

(For more information about Dr. Li’s practice, see liintegrativehealth.com.)

For more information, please also see Henry’s book, Asthma Allergies Children: A Parent’s Guide and the Facebook page, Chinese Herbs for Allergies

Henry Ehrlich is the editor of asthmaallergieschildren.com and co-author of Asthma Allergies Children: a parent’s guide and half a dozen other books. He was a long-time professional speechwriter, with three grown children and one granddaughter.

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Henry at the 2014 Food Allergy Bloggers Conference speaking about Chinese Herbs for Allergies along with Dr. Li.

 

Could Gut Bacteria Cause Food Allergy?

Good Gut

 

I’ve just finished reading this book about gut bacteria, which has led me to believe even more strongly in the role that good gut bacteria plays in health. While the book doesn’t specifically cover food allergies, it does state that “Dysbiosis, or microbial imbalance, is observed in people with a variety of health problems such as Crohn’s disease, metabolic syndrome, colon cancer, and even autism.”

The authors (both are PhD’s in Microbiology and Immunology at Stanford University) also cover the damage that our hyper-hygiene world does to killing off good gut bacteria – along with killing the bad pathogens. This phenomenon, the hygiene hypothesis, has been postulated as one of the potential causes of food allergies.

Research has found that the bacteria in our gut talk to other areas in our body, constantly regulating our body. So, if a child doesn’t have the proper bacteria to tell the body to NOT react to foods such as peanuts, tree nuts, eggs or dairy – the body believes these foods are a pathogen, and protection is needed – thereby initiating the allergic reaction.

Of further interest to those with children with Eosinophilic Esophagitis (EoE) is the information provided on the mucosal immune system: “The mucosal immune system contains two branches, one that reacts aggressively to a threat (the pro-inflammatory side) and one that dampens the aggressive response once the threat subsides (the anti-inflammatory side). The proper response to gut microbes involves a continual balancing act between these two branches, much in the way that a seesaw is balanced when equal weight  is placed on both sides. When the seesaw is perfectly balanced, immune harmony is achieved.”

There is a link between gut microbiota and personality/psychological issues. In research with mice, microbe-free mice had memory-related problems. “Chemicals produced by these gut bacteria can penetrate the walls of the intestine and seep into circulation and reach the brain.” More research is being done to identify these chemicals and how they affect our mental state.

The book has convinced me that a healthy diet of vegetables, probiotics, fermented foods and MACs (Microbiota accessible carbohydrates) are in our family’s future!

 

 

 

Asthma of the Gut aka Eosinophilic Esophagitis

Most of you reading this blog are probably familiar with asthma – the ‘regular’ asthma that is in the lungs, causing mucous production, coughing and wheezing. Asthma is a serious illness causing NINE deaths per day in the USA. For some people, it’s very hard to get it managed properly. For others, a cocktail of inhalers, bronchodilators and nebulizers are needed.

Now, imagine if you had asthma in your gut!

“Asthma of the Gut” is the best description I’ve heard yet to explain Eosinophilic Esophagitis (EoE). Gastrointestinal doctors are now using this term regularly to explain this debilitating condition.

EoE

What is EoE? According to APFED (American Partnership for Eosinophilic Disorders) it is: “an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EoE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.” APFED has more detailed information about EoE which you can read here.  There may be a genetic link in some families, and environmental allergies may also be a component.

According to AAAAI (American Academy of Allergy Asthma & Immunology) : “In EoE, large numbers of white blood cells called eosinophils are found in the tissue of the esophagus. Normally there are no eosinophils in the esophagus. EoE can occur at any age and most commonly occurs in Caucasian males. The symptoms of EoE vary with age. In infants and toddlers, you may notice that they refuse their food or are not growing properly. School-age children often have recurring abdominal pain, trouble swallowing or vomiting. Teenagers and adults most often have difficulty swallowing. The esophagus can narrow to the point that food gets stuck. This is called food impaction and is a medical emergency.”

Diagnosis of EoE

The diagnosis of EoE can be tricky since it can mimic other illnesses, such as gastroesophageal reflux disease (GERD), celiac disease, parasitic infection, Crohn’s or colitis. In general, if you have the symptoms discussed above, an endoscopy is going to be performed, where esophageal biopsies will be obtained. If you (or your child) have at least 15 eosinophils in at least 1 high-power microscopy field, then you are likely to receive the diagnosis of EoE.

Mast Cell Involvement/Treatments

I haven’t heard of specific research on this; however, I want to mention some anecdotal evidence that I have. Almost every parent of a food allergic child that tells me that their child is inhalant allergic to a food has later been found to have EoE. I’ve had two GI doctors tell me that if eosinophils are elevated in a person, then mast cells are also elevated. When mast cells are elevated, a person is much more sensitive to their environment, and more likely to react to even the smallest exposure of an allergen.

It takes a special lab staining technique to check for mast cells in the gut, and most GI doctors in the USA aren’t using this stain. Therefore, if the doctor checks for mast cell involvement, too many times they erroneously think there isn’t a mast cell increase. Yet, both my daughter and I have later had the Alcian Blue 3 staining completed on our biopsies and found that our mast cells were extremely high!

In adults, GI doctors are regularly prescribing mast cell stabilizers (such as Ketotifen or Gastrocrom) for their patients with eosinophilic disorders. Yet children with EoE are commonly not receiving these medications. According to AAAAI, “Glucocorticosteroids, which control inflammation, are the most helpful medications for treating EoE. Swallowing small doses of corticosteroids is the most common treatment. Different forms of swallowed corticosteroids are available. At first, higher doses may be needed to control the inflammation but they are linked with a greater risk of side effects.

Proton pump inhibitors, which control the amount of acid produced, have also been used to help diagnose and treat EoE. Some patients respond well to proton pump inhibitors and have a large decrease in the number of eosinophils and inflammation when a follow up endoscopy and biopsy is done. However, proton pump inhibitors can also improve EoE symptoms without making the inflammation any better.”

Elimination diets and/or elemental diets (amino acid formula) are other treatments for EoE. Yet even those don’t work well for some people.

You may have read about a family who chose a wildly different treatment for their son when none of the standard treatments worked. You can read what Gerson Therapy did for this little boy here.

Eosinophilic Gastrointestinal Diseases (EGID)

According to APFED, “Eosinophilic esophagitis (EoE) is far more common than the eosinophilic gastrointestinal disorders that affect the rest of the GI tract. ”

I am that rare bird! I have a diagnosis of  eosinophilic involvement throughout my gut – stomach and intestines in addition to esophagus – my diagnosis is Eosinophilic Gastroenteritis, which my doctor said is equivalent to the evil twin: Mastocytic Enterocolitis.

All of these terms just sound so much easier as “Asthma of the Gut”.

In the case of the gut, where 75% of the immune system resides, there is certainly a need for some mast cells to fight off parasite or bacterial infections. However, eosinophilic disorders create a gut with an abnormally high amount of eosinophils (and mast cells) in the esophagus,  stomach, duodenum, intestines and colon. Inflammation occurs, and the lining of the gut is damaged creating malabsorption. It is a dangerous cycle to get into.

What are the symptoms of EGIDs?

Healing EGID

Because there is virtually no research on EGIDs – there are so few people to study – I’ve taken on my own recovery. I do eat a very limited, organic diet currently to help my gut heal. I take several medications to manage my mast cells and eosinophils (Budesonide, Zyrtec, Zantac, Ursodiol and Ketotifen). My gut is healing enough now to slowly decrease my Budesonide!

The biggest healing force I’ve found is meditation. If I envision my gut healing, on a daily basis, I’ve found that my intention is stronger than any illness!

 

Why are some Parents too relaxed about Food Allergies?

I remember when I first ran into another Mom whose son had food allergies. My son, Morgan, was 18 months old happily playing at the park. I was chatting with another Mom watching her 10 year old son playing. In the course of the conversation, she mentioned that her son had peanut allergies. Since Morgan had just been diagnosed at that time, I was ready for all the scoop on managing the allergy appropriately. She told me to be prepared to be in the Emergency Room a couple of times a year, like they were. She recounted a story about her son eating a cookie, which turned out to have peanut butter in it, and ending up going to the ER. I was horrified!

At that time, I didn’t know much about managing food allergies, but I knew that a couple of trips to the ER every year wasn’t acceptable to us. This was the beginning of an education about food allergies for me and for our family. Mostly, we wanted our son to know that vigilance about his food allergies was going to be required.

So what makes a family too relaxed about food allergies? Through the years, I’ve found that families who haven’t received all the information about how serious food allergies can be tend to be too relaxed. Sadly, these same families are frequently the ones who don’t carry an EpiPen or Auvi-Q with them at all times, and some haven’t even been prescribed an autoinjector. When anaphylaxis occurs, they say that they never realized how serious a food allergy could be. It’s tragic.

This points to another issue – many families only see their primary care physician and not a Board Certified Allergist about food allergies. We were so lucky that our primary care doctor knew when he was out of his league with Morgan’s reactions. He referred us to an allergist for proper care. A Board Certified Allergist should be able to distinguish the false positive from the actual food allergy. An Allergist can determine whether the wheeze is from asthma or another source. It’s their specialty.

Then there’s the too relaxed family where the child hasn’t had any food allergy reactions in years. It’s easy to become complacent. Like a snake in the grass, that’s when the complacency will come back to bite you! Just because a child hasn’t had a reaction in years doesn’t mean they’ve outgrown the allergy. It’s important to have your child retested to determine the level of their allergy as they age. We have done this every 4-5 years. Morgan hasn’t had anaphylaxis since he was 10 years old (and that was to fish to which he had previously tested negative!). He still tests allergic to multiple foods. He hasn’t grown out of any of his ‘original’ food allergies. He’s just been cautious!

There’s also the child who uses food allergies and complacency to ‘get back’ at a hyper vigilant parent. Instead of being empowered to take on their own food allergies, they’ve resigned their condition to Mom or Dad to manage it. We ensured that our son knew he was responsible for his food allergy care and management. From the age of 4, he carried his EpiPens on his body when we left home. He began carrying his EpiPens at school once the law was passed in Colorado allowing him to do so, which was when he was 11 years old. This encouraged his awareness of taking care of himself. We involved Morgan in every decision about going to parties, family gatherings, and school activities. He needed to let us know what he felt comfortable with when food was involved. This encouraged him to be responsible for his food allergies.

I recently was at a parent event at the University of Denver speaking to a father about his son’s study abroad experience. I mentioned that Morgan was choosing among universities in English speaking countries because of his multiple food allergies. The father says to me, “My son has peanut allergies, and we never thought about mentioning that.” Thank goodness his son studied in Australia! For Morgan, he’s very aware that a language barrier could mean the difference of a wonderful study abroad experience and one where he ends up in an ER!

We aren’t relaxed about Morgan’s food allergies, and we aren’t so hyper-vigilant that he can’t live life. There’s a balance in between those two extremes. It takes practice and lots of communication with your child to find the middle ground.

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Banana Oat Cookies – Free of the Top 8!

Banana Oat Cookies

These cookies are wonderfully tasty and healthy for the entire family!

Here’s how to make them:

 

3 mashed bananas (ripe)

1/3 cup apple sauce

2 cups oats (I use the old fashioned kind)

1/4 cup safe milk (I’ve used regular milk and almond milk – any kind will be great!)

1/2 cup raisins

1 tsp vanilla

1 tsp cinnamon

 

Mix all ingredients together with a beater. Drop onto cookie sheet in spoonful size. They don’t expand since there’s no flour!

Bake at 350 for 15-20 minutes

 

That’s it! Enjoy.

To Feed or Not to Feed Peanuts to Babies

peanut_infant_creeper

Many of you have probably seen the results of the LEAP (Learning Early About Peanut Allergy) study, which basically found that early introduction of peanuts into a baby’s diet can promote tolerance. According to The New England Journal of Medicine this study was supported by grants from the National Institute of Allergy and Infectious Diseases; Food Allergy Research and Education; the Medical Research Council and Asthma UK; the United Kingdom Department of Health; the National Peanut Board (emphasis added); and the United Kingdom Food Standards Agency. It was a follow up to findings that Israeli children who consumed a peanut snack called Bamba as infants had far fewer peanut allergies than Jewish children in the UK who didn’t eat Bamba.

One of my favorite write ups about the LEAP study was from Dr. David Stukus entitled “Breaking Down the Landmark LEAP Study: What Does it Mean?”

Since the findings of the LEAP study have been released, I’ve been inundated with people, with good intentions no doubt, asking me “Did you see the study that said you should have been feeding your son peanuts?” For those of us parents of children with food allergies, those statements can make us cringe! This study has no bearing on those children who ALREADY have peanut allergies. And, in my opinion, there are a lot of other factors that weren’t taken into account with this study, despite how excited the medical community and the media appear to be.

My son, Morgan, would have likely been a candidate for this research. He was covered in eczema at a few months old, and likely would have tested positive for egg allergies as a small infant (we didn’t find out about his egg allergy until he was 15 months old and reacted to his MMR shot).  He also could have been one of the children who reacted too violently to the peanut skin prick test (over a 4mm wheal) which would have limited his inclusion in the study. (We didn’t have a skin prick test completed for peanuts until he was 18 months old in 1997, and the allergist didn’t provide us the information about the wheal size – just that his peanut allergy skin test yielded a 4+.)

Looking back, had he been chosen to be a part of this study to eat peanuts, I would have had serious reservations. Based upon what I know today, I would certainly decline to ever feed my child peanuts when he already has eczema and an egg allergy. What concerns me about this research is the same concerns I have about Oral Immunotherapy. You can read my blog post, Food Allergies, Mast Cells & Hitting Your Threshold that outline those concerns. Yes, the researchers followed the children until the age of 5, but that is far from a mature, adult gut and immune system. And while they tested the IgE of all participants,  high IgE is not the only indicator of having detrimentally affected the body. Eosinophilic Esophagitis and mast cell issues can be involved without a high IgE. There are many more bodily systems affected, and from what I have read, no endoscopy was performed on the subjects, so the inner workings of the gut were not looked at. The sinuses and lungs were also not looked at. What impact did eating peanuts have on those areas of the body? Having research that only looks at whether a child can consume peanuts doesn’t look at the impact on the body as a whole. Nothing in the study reported on findings in the atopic march.

Next, my concern is what about the multiple food allergies that my son has? If I were to have fed him peanuts, what impact would that have had on his “other” life threatening food allergies –  tree nuts, sesame, fish and shellfish? We didn’t know about all of these other food allergies until Morgan aged and ate or came in contact with these other foods. In other words, a skin prick test at less than a year old may not reveal everything that’s going on in an infant’s body when looking at food allergies.

Lastly, feeding peanuts to a child with eczema and egg allergies SHOULD NOT be done without the consultation of a pediatric allergist. Parents with a Google MD degree don’t have the necessary information to safely embark on this study at home. If your child already is exhibiting allergic issues, see a specialist. Even the pediatrician may not have enough information to safely care for your child effectively.

 

 

 

How Can A Body Heal Itself?

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There is an abundance of research trying to find a cure for food allergies. Because of the stomach issues in our family, mast cell disorders and EoE, we have chosen to seek out different healing arenas than eating what we’re allergic to.

About a year ago I began seeing a chiropractor that practices Network Spinal Analysis (NSA). For those of you who have read my blog for a while, you know that our family is very open to new modalities of healing AND we still see medical doctors too!

We have spent a lot of money seeing NAET specialists (see my write up on that here toward the bottom of the page), acupuncturists, chiropractors, Sacral Occipital Therapists, massage therapists…the list goes on and on. Many of these practitioners have provided temporary relief, at best. And the abundance of them have served only to lighten our wallet! I know that my son needs to have medication to manage his ocular allergies, his asthma and his nasal allergies; however, I’m always on the lookout for something that can assist his body to truly heal from these maladies.

My daughter and I have a mast cell disorder, and I was having severe lower back pain that wasn’t being helped by traditional chiropractic care. I decided to try something new and be the guinea pig in the family. It turns out that the mast cell disorder and the back pain were related, according to my new NSA chiropractic doctor. The more allergic reactions I was having, the more mast cell proliferation occurred. And the more mast cells, the more my back hurt. It was as if my spine was shutting down my entire nervous system in an attempt to protect me from myself!

Network Spinal Analysis works to utilize the energy in the spine to realign itself without the standard “cracking” of a chiropractic adjustment. The practitioner helps to point out where the energy is blocked, and gets the central nervous system to pay attention in an entirely new way. New neural pathways are opened up, and more energy is brought in to the spine, so that healing can occur. Within a few months, my back pain ceased, and almost a year later, my mast cells are beginning to behave better too.

Last summer, my son, Morgan, began seeing this NSA chiropractic doctor and almost immediately was able to go off of his Pulmicort steroid. I wasn’t sure that was a good idea until we went in to see the allergist and all of his breathing tests were normal!! He has had to use a rescue inhaler only once since then for a few days during a respiratory infection. He’s had no chest tightness, and feels great.

I really believe there is something to raising the energy in the body to create healing. Let’s face it, all the antihistamines and steroids are doing is helping with the symptoms. I really want my body, and my son’s body, to begin healing. Since Morgan and I had such good results with this new modality, my husband and daughter have also begun receiving entrainments (what the doctor calls the session). They too have had remarkable results with less body aches, better digestion and overall energy becoming higher.

There’s another line of thinking about accessing a higher energy through meditation to create healing. Dr. Joe Dispenza has written a book, “You Are the Placebo” that asks, “Is it possible to heal by thought alone—without drugs or surgery? The truth is that it happens more often than you might expect.” His book details scientific research where people have healed themselves, and where others have made themselves sick, simply by their thoughts and beliefs. I know that my mind is certainly powerful enough to create anxiety symptoms in my body. It’s powerful enough to create a stomach ache out of fear or worry. It’s also powerful enough to boost up my energy and overall capabilities to handle a crisis of one of my children, regardless of how I’m feeling physically in the moment.

I have begun to sit in meditation daily for the last 4 weeks, based upon the guided meditation provided in the book. I’ve already seen and felt a difference. I’ve been able to decrease the amount of medication that I take for my mast cell disorder! It’s mind blowing stuff, when you really think about it. Are our minds really powerful enough to heal our bodies? I am becoming a believer!

 

 

 

My Obsession with my Child’s Health

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Ever since my son, Morgan, was a baby I’ve been obsessed about his health. I have a daughter five years older than Morgan, whose health I’ve also been concerned about at times, but never to the level of obsession that I’ve felt with Morgan. What is it about his health that creates these obsessive thoughts and behavior patterns in me?

If I analyze it (which I’m prone to do to try to find some missing tidbit of information that could help him!), I think that when Morgan got Respiratory Synctial Virus at 3 weeks old, I saw how much his health relied upon me ensuring that he got round the clock treatments of Albuterol and that he always had the oxygen canulas in his nose, even while I was breastfeeding him. This went on for 3 weeks, and it started my obsessive fear that if I did something wrong, my son’s health was going to suffer.

Once he was diagnosed with a peanut allergy at 9 months old, the health ante was raised. Now I was responsible for ensuring that he didn’t have any life threatening reactions to peanuts. I got a long list of items from our allergist that I needed to do to ensure that a reaction never occurred – read every label of every food every time he ate it, cook only safe foods in the house, make sure he didn’t touch anything he was allergic to…You get the point! You’ve been there too! If I wasn’t already tending toward obsessive/compulsive behavior, I’d have been put on the path with the doctor’s directions! Adding asthma to the mix in his toddler years once again upped the ante, and then adding more foods to his long list of severe allergies – tree nuts, sesame, fish and shellfish – raised my obsessive behaviors to a fever pitch.

Through the years, I’ve met so many mothers whose own health has deteriorated as they attempt to take care of a child with severe health needs. We parents of children with food allergies seem to suffer the most of any parents I’ve met. I think it’s because so much is riding on our ability to create a safe environment for our children at home, at school, with family and friends, at playdates – the list is endless. And research has shown that my anxiety about any of these issues can play out in my child’s emotional balance. Which means I need to be concerned about all of these life issues, but not anxious, fearful or worried! And that is so difficult.

If you read my son’s most recent blog post about his first quarter of college, you know that even with his excellent grades and heavy workload, he came home after having been sick throughout the previous 10 weeks to be diagnosed with mononucleosis. He was thankfully able to rest during the school break, which was 6 weeks long for him, and begin to get well. When he left to go back to college , he was by no means 100%. He’s still in need of an abundance of sleep, and just not fully energetic. This sets off an obsession of worry for me that he will overdue it, stay up late, volunteer for too many activities, and have another college quarter full of sicknesses. Or maybe he won’t be healthy enough to go to school at all! I’ve practically made myself sick with all my thoughts and scenarios.

I’ve heard men say that it’s a “Mom thing” to worry about our children and their health and safety. But what are we doing to our own health and peace of mind? Is it necessary to worry? Or would concern suffice?

I have an immune disorder – a mast cell proliferation in my gut – that definitely requires that I focus on my health. The ultimate fear for me with Morgan’s food allergies has been that I’ll do something wrong – serve him a food that will cause a fatal severe reaction, or that someone else will – and that has motivated this obsession with perfection in the area of food allergies. After all, our allergist has told us what he needs to be safe! I have all the data to show that I need to be this worried. Yet, me worrying about his health has taken away from my ability to focus on my own.

 

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How can we parents of children with food allergies find a balance of safety without obsessing over our children? If you have an illness that also needs to be managed, how is that possible? I have a few ideas from what has worked for me –

1) I find it helpful to remember that there is a God and it’s not me. I can teach my son to always carry his EpiPen, to train others, to eat safely, and to take care of his health – that’s my footwork as a good parent. Then I get to turn the rest over to God or to whatever benevolent spirit you might believe in.

2) God has no grandchildren. Very similar to #1 above, but this reminds me that I’m not the go-between for everything that goes on in my children’s lives. My children get to have their own lessons in life, many of which have nothing to do with me. It was vitally necessary to teach Morgan how to advocate for himself, because I wasn’t going to be with him always, but it’s up to him to utilize that training now that he’s almost 19 years old!

3) I am responsible for taking care of my own health. As you hear on every airplane flight, “Put your own oxygen mask on first, and then assist your child.” In the book by Dr. Joe Dispenza called “You Are the Placebo”, he states, “You must observe and pay attention to those emotions that you’ve memorized and that you live by on a daily basis, and decide if living by those emotions over and over again is loving to you.” What better way to demonstrate to my children, who both have health issues, how to take care of themselves than for them to watch me on a daily basis take my medicines, watch what I eat, get enough sleep, and turn over those things outside of my purview.

4) I’ve ceased to expect perfection – from my son or from myself. Let’s face it, accidents happen. I’ve purchased foods from the grocery store that had an allergen in them (the box had a ‘may contain’ statement). I certainly didn’t mean to do it, and thankfully only a small reaction occurred. Another time, my son caught the mistake before he ate the food. This was a great learning lesson for everyone.

5) Forgive myself and others. Tying onto #4 above, I’m not going to be perfect, and when I’m not, I can apologize and then work on forgiving myself. Sometimes with other people’s lack of understanding of food allergies, I’ve had to work harder at forgiving them.

6) Practice the Serenity Prayer which is “God, grant me the Serenity to accept the things I cannot change; Courage to change the things I can; and the Wisdom to know the difference.” There are a lot of things I can and should do for my son’s health. Worrying about him isn’t about acceptance and it isn’t about courage either. Worrying is wasted energy. I look for what I can do, and do that. Now that he’s in college, I have far fewer things to be courageous to do for Morgan. The most courageous thing is to hold my tongue, and allow him to learn what he needs to learn in life at as young of an age as possible.

7) Talk with someone else. I have friends and mentors who have helped me through the years by listening to me recount situations, obsessions and worries. They listen, and by listening the burden is shared. Suddenly it doesn’t seem as big of a deal as it did when it was rolling around in my head. And many times I find alternative ways to look at the health issue that seemed insurmountable.

8)  Stay in the here and now. Many times my obsessions are spawned out of fear of the future. I want to control what’s going to happen, and I want to make sure that my son is always safe. We did everything right to manage food allergies in college, and didn’t know that mono would be the tripping point. This shows me that I just need to do what’s in front of me to do, and the future will unfold as God sees fit.

9) Try to find the humor. If I’m not laughing at myself, I’m sure someone else is! After all, flapping my mother-bird wings is a sight to behold!

So, here’s to good health for all of us parents! Here’s to proper concern, and less obsessive thinking. I, for one, need to remember that daily!

What Awakens You at 2 am?

For those of us with children with food allergies, awakening in the middle of the night worrying about cupcakes isn’t that unusual! Of course, if you share that concern with your neighbors who don’t have to worry about unsafe food, they may not understand. Food allergy parents understand all too well!

My son started college in September, so I was surprised to find myself awake at 2 am one night recently worrying about our son, Morgan. We had worked really hard to create a safe eating experience for him in the dorm cafeteria, and it was working great. His roommate was more than understanding about not bringing in Morgan’s allergens into the dorm room. Everything was working well – why was I worrying?

Morgan was heading off on a weekend trip with his leadership class. Prior to him leaving for college, we had talked with the coordinator of the leadership class, and the fact that there would be an overnight trip to a cabin in the mountains. It was the night before this particular trip that I found myself awake concerned if he had contacted the chefs like the coordinator had said he could. I was more concerned that he was also bringing along his 2 extra EpiPens (he always carries 2 in his pocket, but I wanted to ensure he was going to be extra cautious)!

So I lay there wondering if Morgan would think I was crazy if I sent him a text at 2am asking him to please remember his 2 extra EpiPens. After 30 minutes, I no longer cared what he thought and went to find my phone to fire off a text to him. Funny thing – he wasn’t up in the middle of the night worried like I was!! In fact, he had already handled the conversation with the chefs and had packed the extra EpiPens – as per his text back to me at 7 am.

No matter what his age, and how many times he has taken care of himself – I’m still a Mom. After 18 years of monitoring his food, his environs and his safety, it’s very difficult to let go and allow Morgan to take the baton and manage his food allergies himself. He’s doing a great job!

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Parents Weekend – November 2014

 

 

One week into college – and he’s sick!

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Our son, Morgan, had a great first week of Orientation at the University of Denver (DU). Then, on the first day of classes, he began to get sick – really sick! He continued to have a fever and chills for two days. He knew to start up his Pulmicort inhaler immediately. We discussed the breathing difficulties the Enterovirus 68 creates for children and teens sending them to the ER and Intensive Care. Yet Morgan didn’t have any classic cold symptoms – no runny nose, no sneezing, and only a mild sore throat.

After two days of feeling awful, and missing a few classes in order to sleep, he called me, aka Mom. At that point, I suggested that he go to the Health Clinic on campus; however, it was almost 7 pm and the Clinic was closed. So, we talked and he decided to go to a local Urgent Care. He was feeling so poorly that he asked his roommate to drive him. The wait was over an hour, and the doctor didn’t know what he had. The strep test came back negative, and sadly even if Morgan has strep, the test always come back negative. The doctor prescribed a very strong antibiotic for him to take to kill off any bacteria in his system. He took the antibiotic, and then was up during the night vomiting it back up.

By the next morning, he was feeling so awful, that we talked about him coming home to see our family doctor that has known him his whole life. Once he got into this doctor’s office, his fever was almost 103. He had vomited during the drive home from college, and again in the doctor’s office after another strep test – which also turned out to be negative . Blood was taken to ensure he didn’t have mono, but it would likely come back negative because Morgan didn’t have symptoms long enough for the test to be accurate. The doctor gave him a antibiotic specific to kill off strep.

We also took Morgan to a chiropractor that our family has been seeing who utilizes Network Spinal Analysis (NSA) and Somato Respiratory Integration (SRI) in her practice. She is amazing when it comes to diagnosing the underlying issues that occur with our bodies – and not only the spine, but all illnesses. She determined that Morgan had a bacterial infection just by the way his liver was reacting. She gave him a treatment, plus had him soak his feet in a foot back with herbs. Between this treatment, and the antibiotic, Morgan was feeling much better the next day. 

One day later, however, he broke out in a rash that covered his face, torso and chest. Morgan called back in to the family doctor, who thought it must be some type of virus, and the doctor suggested that he stop taking the antibiotic! In other words, he didn’t know what Morgan had either. Morgan has continued to get better, and has also continued to take the antibiotic.

I wanted to write a post about this because part of sending our children with food allergies off to college is the “hope” that they can take care of their own medical needs, or find a doctor that can assist. In addition to monitoring their food, training others on their EpiPen or Auvi-Q, and if they have asthma, being able to monitor that – they also need to know how to manage the current healthcare system! It’s a lot to take on at 18 years old. And it’s something to consider when sending your child with food allergies off to college where they go far away.

What would you do if your child got REALLY sick and they are 2000 miles away? We were really grateful that Morgan is only 60 miles away, and that we could pick him up and bring him home to see doctors who know him well. We also wanted to see him ourselves to determine just how sick he really was. He was home for 2 1/2 days, and slept most of the time. We took him back to school when he still had a rash, but was feeling much better.

What can you do to make sure that your child is ready to manage doctors in our healthcare system while away at college? Well, here’s what we did long before Morgan left for DU:

1)  Have your child fill out all the doctor office’s paperwork each time you go in. We started this when Morgan was about 12 years old. Name, address, phone number is the basics!

2)  Review with your child what medications they take, what time they take them and what strength. Every time Morgan visited the allergist, he had to write this down on the intake paperwork. It helped him to know exactly what meds he takes. He was very adept at this by high school age.

3)  Have your child make an appointment with a doctor. This is especially important for them to practice when they aren’t feeling well. It’s really hard to deal with a doctor office phone tree when you’re healthy. When you’re sick and have to press a lot of numbers in order to make an appointment, it can be very frustrating. This is good to practice in high school.

4)  Get a health insurance card for your child to keep in their wallet. When you go into a doctor’s office with your child, have them present the card. Your child needs to know if they will have to pay a copay or not. Who is responsible for the bill? Is it Mom or Dad that holds the insurance? All of these details are vital when they go off to college.

5)  Decide who is going to ensure that medications that are taken get refills in a timely fashion (parents or student). Some insurance companies require that refills are obtained through mail order only. Which address do you want to use – home or college? Who is going to pay?

6)  Decide if your child will give you access to their medical records once they turn 18. With the HIPAA (Health Insurance Portability and Accountability Act) laws, at the age of 18, your child has to either handle their medical situations themselves or to authorize you, as a parent, to have access to their medical records. Believe me, even trying to get a doctor to call your child back can be problematic if you aren’t signed on as an authorized party on the HIPAA paperwork!

Thankfully, Morgan knew what to do when he was sick, and he also knew when it was more than just a mild sickness and time to call home. We’re grateful that he learned what to do before he left home, and we’re especially grateful that he’s feeling almost back to normal now!

 

Starting College – We’ve Worked Toward This Goal Forever!

Our son, Morgan, started college at the University of Denver (DU) this week. What a step it is to let him go, to make his own decisions, to take care of himself in the dining room, and to teach whomever he wants to teach about administering his EpiPen! This is what we’ve worked toward since he was first diagnosed with food allergies. It’s likely that he will make decisions different than I would, or than his Dad would. That’s part of growing up and learning!

We had worked toward his first day of college with DU Administrators for a while. Morgan, my husband and I met with the Disability Services Office back in March when we toured the campus. We discussed what accommodations he would need – safe food, no allergens in his room (no peanuts, tree nuts, sesame, fish or shellfish), and an A/C unit in his dorm room to mitigate his asthma. They didn’t think any of these would be an issue, but required that we complete some paperwork to get the university to pay for his A/C unit. We were given contact names for the chefs at DU to personally speak with them, and it was up to Morgan to discuss his needs with his roommate. If there was an issue, he could then get ‘outside’ help.

We problem solved various scenarios with the Housing Office at DU what could work for Morgan to attend DU if he was unable to get dining services to provide safe meals, and/or unable to get the roommate situation worked out. One of the Housing Office’s student employees has food allergies, and she talked in detail with Morgan about how she was safely able to eat in the dorm, how she texted chefs about her meals, and never had any allergic reactions! That encouraged us, but we also wanted a back up plan. The Housing Office offered that he could live in a dorm that had a kitchen in between two rooms. He could then have an RA (Resident Advisor) living in the other room to lessen the need for education of his food allergies. (Normally 4 boys live in these rooms, 2 on each side). Morgan would then have to shop and cook for himself. His preference was to live in a ‘regular’ dorm room with the Pioneer Leadership Program (PLP) – a Living and Learning Community that he applied to participate with. His one roommate would be a boy within this program, and Morgan would therefore eat in a dining hall.

Morgan and I roll played a few scenarios: what would you do if a professor is eating one of your allergens? (His answer: probably nothing unless I had to shake a hand, and then I’d tell them.) Where is the nearest hospital? (He looked on a Google map to find one). What would you do if your roommate is eating one of your allergens? (His answer: Talk to him about it!) What would you do if you knowingly ate one of your allergens – accidentally – but didn’t have any symptoms? (His answer: give myself an EpiPen and then call 911).

Morgan had several conversations with the head chef at DU over the summer, and he felt confident that he could live in the PLP dorm and eat safely since the cafeteria already labeled all of the foods that they made, and all the chefs were trained on food allergy awareness. Morgan and I met with the chefs one week prior to the school year starting. I wrote about that in a blog post here.

Morgan received his roommate assignment in July and started Facebook conversations with the young man. They met for the first time a few weeks before school started in a coffee shop in our hometown when his roommate was visiting extended family. They talked for 3 1/2 hours, and Morgan came home and said he never mentioned food allergies! I almost wanted to step in and start a conversation about how important it is for his roommate to be aware of his food allergies! Instead, I decided that I needed to step back and let him manage it. Morgan did mention his food allergies in a text message (kids these days!!) a few days prior to showing up at DU. His roommates response was, “Darn, I was really planning on eating fish in the room!” Apparently, it was no big deal to him at all to keep Morgan’s allergens out of the room.

When we arrived at DU, carting wheelbarrows worth of clothes and accessories into Morgan’s dorm room, we found the newly purchased A/C unit in a box. After inspecting the unit, my husband determined that he hadn’t brought the proper tools to put it together. I called the Housing Office to ask if someone was able to put the unit together for us. Within 5 minutes, the director of Housing was in Morgan’s room introducing herself! She called maintenance who had the unit operating within the hour!! Amazingly quick work! Morgan has been sleeping in air conditioning ever since. His roommate’s mother was thrilled since hayfever was a common issue for her son. She was hoping his allergies get better too!

Morgan brought practice EpiPens with him to college, with plans to train his roommate and others in the PLP program. Several of the chefs we met are EpiPen trained. Morgan is also capable of administering the EpiPen to himself. This is something I have to let go of. Morgan has ALWAYS carried 2 EpiPens since he was in middle school. I trust him to properly care for himself by training others.

At lunch the first day, Morgan went and talked with his chef contact about what was safe to eat, and whether he needed anything specially made. My husband and I were at DU for three days of Parent Orientation, and also ate in the cafeteria with the students. I was thrilled that they had a microwave out in the dining area for me to heat up my special meals, and my husband was thrilled with the tasty food! Morgan has had no problems finding safe, healthy food at each meal. At the last lunch that we ate with Morgan before we departed, the chef came up to him and asked him, “Where were you at dinner last night?” Morgan told him that he ate at a different dorm cafeteria, to which the chef replied, “Here’s my cell number. Make sure to text me when you don’t eat here so that I know you’re okay!” How wonderful that was to hear!

This is just the start for us, but a very good start it was! It takes a good amount of planning to get your child with food allergies to college, but it can be done. It can be especially rewarding when the college is so well-informed and willing to provide excellent care!

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Off to College – But Meet with the Dining Staff First!

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We are down to counting the days until our son, Morgan, goes off to the University of Denver (DU) for college. Before he moves in, we wanted to meet with the chef at the dorm cafeteria to discuss food allergies and safely feeding Morgan. Morgan had spoken with the DU head chef when we visited DU back in March, before he had made a firm decision on where he was going to school. The chef had suggested contacting him via email a few weeks before the school year started to discuss menus. Morgan took the lead in this, and he arranged a meeting with the chef for today, before DU starts its Orientation Week over Labor Day weekend.

Instead of just meeting with the head chef, we also met with 4 other chefs responsible for the various dorm cafeterias across the campus! What a welcome sight that was to see so many individuals interested in food and in Morgan’s safety! DU uses Sodexho for their food service, but this is certainly a different type of Sodexho than I have run into in K-12 schools or camps.

At the chef meeting, we discussed what foods Morgan was allergic to – peanuts, tree nuts, sesame, fish and shellfish – and found out that one of the chefs has similar allergies. Wow! How comforting that is as a parent to know that a chef not only knows what cross contact is, but also knows all about an EpiPen, and reading labels. In fairness, all of the other chefs also knew about these items too, and were more than willing to provide specific brands of bread, which is one of the biggest issues we have in finding safe bread without cross contact of sesame and nuts. This means they will specially order, or go to the grocery store, to purchase two specific brands of bread that are sesame and nut-free (Pepperidge Farm Pumpernickel and Roman Meal) for Morgan.

All of the foods/dishes in the cafeteria are labelled.  The chefs were more than willing to make a safe meal for Morgan should he feel that was more to his comfort level, especially when one of his allergens is on the menu. And he was asked to talk with them at the beginning of every meal to discuss options.

The chefs all have experience with multiple students with food allergies in the past, and are prepared for any type of food allergy. We discussed the onslaught of forthcoming students with food allergies, and their mantra over and over again was, “We just want to feed you what you want that’s safe.” How wonderful is that?!

Two of the cafeterias have similar layouts with a pizza bar, a salad bar, international dish, and grilled protein. One of the cafeterias is more of a Food Court style where students can take meals to go. Also, the library has a cafe with foods that students can purchase.   On the DU campus, there is a Subway – which is safe for Morgan – and is covered under his meal plan. He has many options, and certainly shouldn’t go hungry!

We are thrilled that we feel great about sending Morgan off to college knowing that so many chefs are interested in his well-being. And Morgan is excited for this next opportunity!

 

A School District Food Allergy Thank You!

Some of you may think that you live in the best school district for managing food allergies. Some of you may think you live in the worst! For us, we KNOW we live in the best district! Many of you have heard me speak about how wonderful our district has been about providing 504 Plans, guidelines, policy and most of all care for food allergy students.

Since Morgan recently graduated, we thought it was time to give Academy School District 20 a formal thank you tonight by attending the school board meeting.

Here’s a part of what I shared:

Our story for tonight begins in 1999, when we began looking for a preschool for Morgan. No private preschool in Colorado Springs would accept him as a student because of his life threatening food allergies. They didn’t want to take on the liability. I was heartbroken, and I didn’t know where to turn.

I approached the District 20 preschool and explained his severe food allergies to the teacher, Miss Linda. When I explained that she would need to keep his allergens out of the classroom and learn to administer an EpiPen, she stated “That’s It?” I can’t tell you the relief I felt. Morgan enjoyed two years of preschool there before attending Foothills Elementary school for kindergarten. That’s when the real challenge began.

There have been so many teachers, counselors, school nurses, custodians, bus drivers and staff members who have been willing to learn about food allergies, and to help Morgan stay safe at school. It would be impossible to thank all of them, but we are so appreciative for how wonderful the D20 teachers and staff have been to keep Morgan safe and included.

There is one Administrator at the district level that we have to thank.  The Director of Legal Relations has been instrumental with the creation and ongoing efforts of the Food Allergy Task Force which began in 2007. This committee has spawned similar groups in school districts across Colorado. The creation of guidelines for severely allergic students in our district was used as a basis for policy at the state level in 2009 when legislation was introduced and passed. District 20 has always been on the forefront in education, and your support for guidelines and policy to keep children with food allergies safe continues that stance.

Morgan never had an allergic reaction at school, and that was due to the incredible teachers, staff and administrators in District 20. 

Here’s part of what Morgan shared:

I’d like to directly thank two individuals who are also here this evening. First, my elementary school counselor. When I first entered elementary school, there weren’t any procedures or policies to deal with food allergies. She had the foresight to put me on a 504 plan that provided accommodations for me to safely attend school and be included – a plan I kept even through my Senior year of high school.  

Second, I would like to also thank my Principal at Foothills Elementary, for being my champion. She took a hard line and kept a strong policy with parents who didn’t want to abide by classroom accommodations, like an allergen-free classroom. Some of these parents, as I’m told, were particularly vicious, but she kept her stance that school needs to be safe for all children to attend, and I would like to thank her for that. 

But finally, I would like to thank you, all of you. You have created one of the kindest, most open and accommodating school districts in the nation. I cannot express my gratitude for your willingness to help me and other food allergic students in this district. Many other children are not as fortunate to have such welcoming attitudes; they face obstacles on a day-to-day basis, and their parents fight teachers, principals, school boards, and even superintendents to keep kids safe.

Thank you. Genuinely, thank you for 15 wonderful years. I would not be standing here, a successful graduate of Air Academy High School without you all, teachers and administrators alike. I’ll be proud to represent Academy School District 20 at the University of Denver as a Boettcher Scholar in the fall. 

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Morgan and I had the pleasure of posing for a picture with Academy School District 20 Superintendent Mark Hatchell at the Board meeting. His leadership keeps more than 600 students with life threatening food allergies safe and included in the school district.

I hope that your experience with your child’s school and school district is as positive as ours has been!

 

Beyond Our Wildest Dreams

A friend of ours says that God answers prayers in one of four ways:

Yes,

No,

Not Yet,

and Beyond Your Wildest Dreams!

When my son, Morgan, started kindergarten in the Fall of 2001, I prayed every day when I dropped him off at school, “God, please take care of my boy!” It was such a part of my routine, and it helped me to be able to walk back home knowing I’d done everything that I could do to keep him safe, including a little prayer humbly asking for help.

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What I didn’t know then is the many positive things that Morgan  – and our family – have received because of his food allergies. It’s so easy to focus on all the hardships and issues that food allergies create. I don’t need to list those here, because if you’re reading this you no doubt know what those are! Back then, I couldn’t imagine what the future would look like for Morgan blazing the trail in our school district.

He was the first student to have multiple life threatening food allergies. He was also the first student to have a 504 Plan for his food allergies. An entirely new culture was going to have to be created in the school, and there were a lot of parents not happy about that!

Now that Morgan has just graduated from high school, I have been reflecting on his entire school career. Some of the good things that Morgan has received from his food allergies are:

  • Compassion for other children who manage an illness
  • A desire to read (at a young age) to be able to read food labels
  • A healthy lunch for school each day made by his Dad in elementary and middle school – usually with a positive hand-written note included
  • Learning how to advocate for himself in various situations, not just when it involves food
  • Close friendships created with kids across the USA by attending food allergy conferences
  • An ability to tell who really is his friend, because real friends care about keeping him safe
  • Great food at overnight camps since Mom packed his safe food
  • A healthier diet than most of his peers!
  • The ability to mentor younger children with food allergies
  • Learning that he is a REALLY good public speaker
  • Creating his own website design company (since working a minimum wage job at a restaurant wasn’t going to be preferable for money-making)
  • Another reason to say NO! to drugs and alcohol
  • A distinguishing element when he applied for college scholarships

It’s been quite a learning experience for him and for me to get him safely through school and to keep him included in activities. He went from preschool through high school in Academy School District 20 – fifteen years in all – without an allergic reaction. We certainly didn’t know that was possible when he began school. That result is beyond our wildest dreams and certainly an answered prayer!

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In the Fall, he is off to the University of Denver (DU), where I’m sure he will continue to blaze a trail with food allergy advocacy. And I’ll bet that when my husband and I drop him off at his dorm, I’ll be saying a little prayer, “God, please take care of my boy!”

Checklist for College with Food Allergies

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I’ve been asked recently to provide a checklist for preparing for college when you’re managing food allergies. We’ve had a lot of experience over the last 5 years preparing and getting both of our children (with different food issues) into college.

Our daughter, Michaela, has celiac disease (diagnosed in high school) and a mast cell disorder, which wasn’t diagnosed until college. She has a very limited diet with many intolerances and a wheat allergy too! Our son, Morgan, has life threatening food allergies to peanuts, tree nuts, sesame, fish and shellfish along with eczema, environmental allergies (pets and pollen) and mild asthma.

We’ve visited almost every college in Colorado, and a few outside of Colorado too. With all that experience, here’s a college checklist to assist your child with food allergies get prepared for college:

Take an accurate self-survey to determine how responsible you are with your food allergies and/or asthma:

Be honest – do you ALWAYS remember to carry your EpiPen/Auvi-Q?
Can you train someone on the administration of your epinephrine autoinjector?
Do you remember to take your other medications (antihistamine, inhaler, etc.) without your parent(s) reminding you?
Are you willing to talk with a cafeteria worker about the seriousness of your food allergies?
Do you feel comfortable talking with a dorm roommate about your need for a safe living space?
Can you cook for yourself and shop for groceries if you’re going to live in an apartment?

If you can answer in the affirmative, you’re probably responsible enough to go away to college and appropriately manage your food allergies. If there’s still a few questions you’re concerned about, I’d suggest working toward that level of responsibility to ensure that your freshman year in college isn’t fraught with a trip (or two or three) to the ER.

In addition to my own children, I’ve communicated with dozens of young adults who are in college managing food allergies. Each of them finds a way to manage their own unique living situation along with their food allergies, yet several of them have experienced anaphylaxis while away at college. Having an EpiPen or Auvi-Q within reach is vital. Accidents do happen, so be prepared!

Get an idea of what you want to pursue academically

Food allergies aren’t the only thing you’ll be managing in college! Having an idea of what you want to major in will narrow down some of your choices for schools. We’ve learned that it’s expensive to pay application fees to multiple colleges, so it’s best to delve into the college website to see what degrees they offer.

If you have no idea what you want to major in, check out a local community college. Our daughter, Michaela, went to Pikes Peak Community College for two years and loved it. It allowed her to decide what she wanted to major in, and then she transferred to a 4-year university after completing her Associates Degree.

Are you ready to leave the safety of home?

How do you feel about going FAR away from home? Will you need to get an allergist nearby to help manage your allergies and/or asthma? Or would you rather your college be closer to home yet enable you to live on campus? Or do you prefer to live at home?

There are a lot of kids without food allergies that don’t do well thousands of miles from home. Others seek that special Ivy League degree, and are more than ready to be a far distance from home. If you have asthma, you might need to live in a dorm with air conditioning, or filtered air.  Not all college dorms have air conditioning; therefore this issue may require discussions with the Disability Services Office (DSO) of the college and a letter from your allergist to get what you need from the Housing Office.

The 504 Plan from K-12 schools doesn’t follow you to college. Every college we’ve visited has stated that accommodations are available in college, however there is a whole new set of paperwork to complete, and documentation of the medical condition will be necessary for the DSO to authorize the accommodation. Many DSO’s aren’t yet up to date with their paperwork for food allergy accommodations. They generally deal with learning accommodations, so some patience and education may be necessary on your part.

At the age of 18, students are considered legal adults. Therefore, Mom & Dad won’t be negotiating accommodations – you will be! Know what you need to stay safe and healthy.

Visit the colleges/universities that interest you academically

These visits are vital we’ve found. Schools can look great or horrible if you only look at their website. Visiting in person gives you a whole different feel for the school. A visit also allows you to check out the dorm rooms and the cafeteria meal plans, meet the students and the professors, take a tour of the campus, check out the emergency procedures and ask LOTS of questions!

What is your ideal living situation in college? What is your ideal college academically? Can these two scenarios be found in one college?

We’ve found that it never hurts to ask for exactly what is wanted. If you want a chef to specially prepare your meals, ask if that can be done. Do you want to live in an apartment? Ask for that. First, you need to know what you’re comfortable with:

When visiting a college, here’s what we look for in relation to food allergies/asthma:

Are ingredients listed on all foods in the cafeteria?
Is there a chef on site to take special orders?
How many of your allergens are regularly served?
Can you speak with a Dining Manager about your needs during your visit?
How old are the dorms?
Has there been any water damage?
Are the dorms Air Conditioned?
If not, what documentation will be necessary to submit for a medical necessity to live in Air Conditioning?
Can the Resident Advisor be trained on the administration of an EpiPen/Auvi-Q?
Can roommates be selected to ensure no food allergens are in the dorm room?
Where is the nearest Emergency Room?
How is 911 handled on campus?
Is food allowed in the classrooms?
Is smoking allowed on campus?
What paperwork is necessary to complete for the Disability Services Office?
Can you obtain that package of paperwork?

There are probably a dozen more questions to ask, but you get the idea that we are VERY thorough. We’ve found that talking directly to the person in charge while visiting the campus is vital. Take the time to set up personal meetings with everyone when you visit and pick up business cards to be able to follow up later. We’ve found that coming to campus with a list of questions generated from Mom/Dad and from the potential student is helpful.

Make a decision!

The best thing to know is that just because you’ve made a decision to attend a specific school, this is rarely set in stone. If things don’t go as planned, you can chalk it up to a learning experience and move on from there.

Our daughter, Michaela, lived at home for the first year and a half while attending the local community college. She wasn’t ready to live in an apartment, shop and cook for herself while trying to adjust to college academics. After 18 months, she was ready to move in to a room in a house she shared with a housemate. She transferred to the local University of Colorado at Colorado Springs, and graduated from there in May 2013. She has her own cooking utensils, cutting board, silverware and dishes. It has worked fairly well, although she has had to do a large amount of education and then remind her housemate when things are accidentally shared.

Our son, Morgan, has decided to attend the University of Denver (DU), where he is hoping to be able to get approval for a room air conditioning unit in his dorm room. The Disability Services Office will be reviewing his paperwork soon. He will eat in the cafeteria where the head dining manager has extensive experience preparing safe meals for students with food allergies. The students get assigned to one chef whom they can text message prior to each meal. Their meal is then prepared separate from everyone else’s. It’s a wonderful system that has worked well for other students managing food allergies! Should the air conditioned room not come through, Morgan will live in a dorm with A/C that also comes with a kitchen, which will be a nice backup. We feel very blessed that DU became a possibility for Morgan when he received a Boettcher Scholarship. It is a dream come true!

We hope that your dreams come true with the college of your choice that can keep you safe and healthy while enjoying a full college experience!

 

 

 

 

 

 

Remembering to Bring Your EpiPen/Auvi-Q ALWAYS!!

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If your child has food allergies, it is vital that they begin, at a young age, to remember to bring their epinephrine autoinjector everywhere!

I had a conversation recently with a Food Allergy Mom whose 18 year old son is no longer remembering to bring his EpiPen with him when he leaves the house. She asked me what could she do? It brought up an interesting conversation about food allergies, safety and teenager’s brains.

Our son, Morgan, is extremely good about remembering his EpiPen. I think there are a few reasons for that:

1.  Morgan well remembers his last anaphylactic reaction to fish when he was 10 years old. If your child was an infant when he experienced anaphylaxis, he may not remember what it felt like to have a severe allergic reaction. He may discount the likelihood of experiencing any type of reaction, especially if he says, “I’m not eating, so there’s no need to carry it.” Which leads us to the next reason…

2.  Our family has specific safety rules. One of those rules is that he always carries his EpiPen on his person. We also have rules that require him to wear a helmet when biking, and wear a seat belt when riding in a car. If you stick with these rules, it’s easier for it to become a habit.

3.  Morgan started carrying his EpiPen in a fanny pack when he was 4 years old. He got accustomed to being responsible for it. He wasn’t allowed to carry it at school until he was in 5th grade per the Colorado law. Once he was allowed to wear it in school, we checked each day that he had it on his belt loop. For a while he carried one EpiPen in a flashlight holder on his belt. Now, he carries two EpiPens in a Garmin GPS pack inside his pants pocket.

4.  Morgan developed a system of stacking the items he needs each day. He stacks his cell phone, wallet and EpiPen pack on his desk so he always knows where they are when he’s preparing to leave the house.

5.  We were willing to turn around and go home to pick up his EpiPens should they have been forgotten. That showed him how important they are. Also, when he first began to travel with his Speech/Debate team, I would ask for a gift: please show me that you have your EpiPens. It allowed me to stay a little calmer knowing that regardless of what occurred during his trip – at least he had his EpiPens!

6.  My husband and I recognize that forgetting things is part of the teenage brain. He isn’t mature enough to realize the consequences of his actions. Therefore, it’s our job as parents to not allow him to engage in such risky activities where the consequence for his action far outweighs the oversight. In other words, if Morgan is caught speeding while driving, he will get a ticket. That is a reasonable consequence. If he forget his EpiPen, that could have life altering consequences. That’s too much of a consequence for a seemingly mild oversight. If Morgan wasn’t willing to carry his EpiPen, or was consistently/purposefully forgetting them, we would curtail his activities until he could prove he was responsible enough to properly care for himself.

As Morgan prepares to go to college, we have asked him to be completely responsible for all of his medications. Remembering to take his asthma medications daily will be vital for him to remain healthy at school. We still have about 6 more months to ingrain this in him! It is a process, but when moving out is tied to performing certain responsibilities, it’s amazing how remembering medications can become a priority.

Food Allergies & Buffets

Easter 2000

 

With the Easter holiday coming soon, the topic of food allergies and buffets is surely to be on any food allergy family’s mind!

The picture above was taken when Morgan was 3 years old, and we ate out for the first time at a buffet for Easter. We really weren’t thinking of all the issues that could occur! Have you ever done something that is so risky and only realized it afterward? Well, that’s how that Easter meal was for us.

We looked around at all the food and determined what was safe for Morgan to eat by asking a few questions like, “Does this food contain peanuts?” Then we served it up for him to eat. We didn’t think about whether the serving utensil had been used to serve other foods. Or whether the food service employee even knew whether the food contained peanuts or not!

There was an abundance of shrimp, crab and lobster being served at that buffet – all on Morgan’s severe allergy list at that time. We just steered him clear of that area, but many family members ate that food.

Despite all of our risky behavior, Morgan had no reaction. However, we learned later that we were lucky. Since then, we have not eaten at a buffet at either a restaurant or at someone’s house.

We have learned the following about buffets:

If there is anything along the buffet line that contains your child’s allergen – it could also end up in foods that are safe for your child. Serving utensils are frequently shared!

Asking a chef for the details about the food ingredients and preparation is the only way to know what is in a food. We have found that buffet foods are frequently made by an army of individuals in hotels, for example. One employee is very unlikely to know everything about every buffet food item.

If your family members want to eat at a restaurant buffet for a special occasion, bring a safe meal for your child!

When eating at a buffet at someone’s home, we allow Morgan to serve his food first only from what we have cooked and brought ! We have never felt comfortable with him eating food that other people have prepared, no matter how well-meaning they are.

We recently attended a luncheon at a local university that was hosting scholarship interviewees and their parents. Morgan had emailed ahead of time to request a meal accommodation free of his allergens – peanuts, tree nuts, sesame, fish and shellfish. He never heard back from the kitchen staff about his request. Therefore, he asked me to bring him a safe lunch since he was interviewing all morning and didn’t want to bring a lunchbox to the interview! 

As we entered the luncheon hall, the buffet appeared to have mostly safe foods for all of his allergens. There was salad, bread, spaghetti noodles, meatballs and vegetables. Morgan asked the kitchen manager about his safe meal request. Her response was, “Oh you wanted the nut free meal.” Well, that wasn’t the only allergen, but that was a place to start! She asked another employee to advise Morgan about what was safe for him to eat.

The employee stated, “don’t eat the salad because it has nuts in it.” Morgan said, “I’m also allergic to sesame.” The employee said, “then don’t eat the bread.” Morgan then said, “I’m also allergic to fish and shellfish,” and the employee responded, “better not eat the meatballs then!” By then, the entire meal was not edible. He pulled out his sack lunch and dove into a safe meal. Lesson learned!

 

Food Allergy, Colds & Other Nasty Bugs!

 

1996 RSV

When our son, Morgan, was 3 weeks old he was diagnosed with RSV – Respiratory Synctial Virus. It was a frightening illness that landed him in the hospital with oxygen necessary around the clock and nebulizer treatments every 4 hours. The illness lasted for three VERY LONG weeks. Thankfully, Morgan fought through the illness and still gained weight like a champ!

Nine months after this occurrence, Morgan touched a peanut butter sandwich, reacted with hives, and we were baptized into the food allergy world.

At 18 months old, Morgan got a horrible cold that got considerably worse during a blizzard that we had. (We are in Colorado, so blizzards aren’t uncommon occurrences). My mother was unable to get home from work, and stayed at our house that night. All through the night, I got up to check on Morgan and his breathing. I knew by the early morning hours that he needed to get to at least get to our doctor’s office. My Mother thought I was crazy. She was accustomed to letting kids just battle through illnesses. I had an instinct that something was clearly not right, and listening to my Mother could have had disastrous consequences. I got into the doctor’s office and we were able to thwart off the need for oxygen thankfully. Morgan was given a large prescription for nebulized albuterol to have on hand for any future similar occurrences.

Morgan continued to have bronchial spasms every time he got a cold, which was eventually diagnosed as mild asthma at about age 3. The impact of RSV, food allergies and asthma was much more problematic for me – aka Dr. Mom. I was forever scared that every sniffle was another major illness requiring an emergency room run. It was difficult to know when to get him immediately into the doctor and when to allow a virus to run its course.

Morgan also had strange reactions to illnesses. He would break out in hives during a virus, for example. Or he would be the only family member who didn’t get sick when everyone else was sharing the germs. I don’t understand everything with the immune system, yet I have learned that children with food allergies just don’t respond the same to illness that other children do. Either Morgan’s system goes way overboard, or he doesn’t react at all.

In the elementary school years, Morgan would want to stay home upon the first touch of an illness. Maybe he felt better at home – almost like he didn’t trust what his body was going to do and he’d rather be at home when something happens! Children at this age are sick so frequently, but I really felt better being able to watch over him.

As he aged into high school, he was more able to handle illness and go to school when he had a cold. And I’ve learned how to let go a little more and realize that not everything necessitates Dr. Mom’s hovering presence!

This past weekend was another one of those scary illness times. Morgan had been at a Speech/Debate tournament all afternoon Friday and into the evening until 11:30pm. He was up very early and back at the tournament by 7:30am Saturday morning. I didn’t see him Friday night or Saturday morning, but I had a sense that he was going to be getting sick. Call it Mom’s intuition. He’s been cramming a lot of activities into his schedule during his last semester of high school, and sleep is frequently missed.

He had 6 rounds in the tournament and he won every round, which no one else was able to do. This means that he will be going to the National Speech/Debate tournament in June. He was thrilled with his accomplishment and must have let out a large sigh of relief.

Then he called me and said that he was so sick that he didn’t think he could drive home. He had chills so bad that his teeth were chattering. I had no idea what illness he could have that was causing such dramatic symptoms so quickly! I drove over to the tournament, which was thankfully in our same city. My husband talked to Morgan about coming home and not staying for the awards’ ceremony. That was a big disappointment for him since he worked so hard, but we needed to get an assessment of what was going on and we wanted to keep the other participants healthy.

We took him to an Urgent Care facility. The doctor determined that it was possibly Strep Throat. Since Morgan had two college scholarship interviews occurring all day Monday (about 36 hours later!), we asked the doctor to put him on an antibiotic immediately even though the Strep Test came back negative. The doctor understood the situation, and graciously agreed!

Morgan slept for 16 hours, got up the next day feeling a little sluggish but knew that he was on the mend. The Strep Test never did show as positive, but the antibiotics worked and he was able to make it to the Scholarship Interviews early Monday morning.

I’m sure we will one day be able to laugh about this past weekend, but it was harrowing to watch him so sick and pale. We can add another crazy immune response to Morgan’s list of odd things – he never tests positive for a strep test even though he has the illness!

 

 

 

Food Allergies & the Senior Class Trip

Airplane

 

The Senior Class Trip to Southern California is upon us! How do you help your teenager to manage their food allergies on a weekend trip? The better question might be – how do you help yourself manage your fear and anxiety while your teenager is on a weekend trip with the Senior Class?!

We’ve had years to prepare for such a trip, but now that the trip is this weekend – all that planning is followed by still more preparations to ensure Morgan’s safety. He’s very aware of what his food allergies are – peanuts, tree nuts, sesame, fish and shellfish – and he ALWAYS carries two EpiPens and a Chef Card for restaurants. He’s had a lot of practice eating out with his Forensics team; and he’s been on plenty of trips with our family and once to the Boy Scout National Jamboree with his Dad along for several days of that trip. This will be the first trip that he’s entirely on his own from start to finish. He’s almost 18 years old, so it’s probably time!

Morgan and I got all his trip paperwork completed by our allergist to allow him to take his medications with him and to carry his EpiPen and inhaler. Additionally, he has to take other meds for his asthma and environmental allergies. He been the manager of those meds recently, ensuring that he takes them every night. That feels good to have turned those over to him.

Our allergist signed off on a Health Care Plan for the trip that included what to do if Morgan goes into anaphylaxis. The chaperones on the trip, all teachers, have only been trained to call 911 after giving an EpiPen. If Morgan were to need to go to the ER in Southern California, someone will need to go with him in the ambulance AND someone will need to stay with him in the ER for 4-6 hours to ensure no biphasic reaction occurs. Morgan and I made a presentation to his chaperones last week at school to ensure they knew all the steps necessary to keep him safe. The teachers were so appreciative to know about the details of his food allergies, since they had a student last year experience a seizure on the trip and they had no medical information about the issue from the family.

Thankfully, the coordinator of the trip, the AP Government teacher, is VERY detailed. She has prepared an itinerary for the trip that includes the times and locations of every activity. This has allowed Morgan to look up the restaurants on the Internet, and to call the hotel to ensure that he can obtain a safe meal for breakfast. On the days when they will be able to eat at Disneyland, for example, or at any restaurant near the hotel, he’s had to do more research on the locations of the restaurants and their menus. I’ve had to communicate my need to know specifically what he’s going to eat and that he’s got a plan. Just saying, “I’ll handle it” doesn’t make Mom feel good!

Morgan is flying United Airlines which doesn’t serve peanuts. I plan on sending him with wet wipes so that he can wipe down his environment on the plane, which we always do when we fly. He’s trained many of his friends about allergic reactions and administering his EpiPen. He will bring EpiPen trainers to do so again. We’ve found that teenagers love to be trained and to practice with the trainers. Some scoundrels like to administer the trainer on their forehead, but I know the message is still getting through!

All of the students will be housed four to a room, boys with boys and girls with girls. The teacher in charge has already insured that Morgan knows all of his roommates and feels comfortable asking them to not bring any of his allergens into their room. Even if Morgan didn’t know them as well as he does, I feel sure he would be able to advocate for himself and have a safety zone in the room.

As for Mom…I will be sending him off with lots of love…and lots of instructions too: Make sure to take pictures and especially make sure to HAVE FUN!!

To read Morgan’s two posts about his Senior Class Trip – read them here and here.

There’s a New Food Allergy Organization You Want to Join!

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There’s a new Food Allergy Organization that YOU want to join – FAACT – the Food Allergy & Anaphylaxis Connection Team. I’m so honored to be a part of this new organization with five other dynamic Food Allergy Advocates! Every one of us manages food allergies in our homes with at least one of our children. Every one of us has been a food allergy support group leader. We know what it’s like to live with the threat of anaphylaxis. We get it! That personal connection makes FAACT the organization that you want to become a part of.

Here is the press release for this great new non-profit organization. We intend to be your voice in the food allergy world!

Food Allergy & Anaphylaxis Connection Team (FAACT) Launched to educate and advocate for all individuals and families affected by food allergy and life-threatening anaphylaxis

Life-threatening food allergies affect more than 15 million Americans, including 6 million children

(West Chester, Ohio) A new nonprofit organization launched today is taking the American public and the food allergy community to a whole new level of support and compassion. The mission of the Food Allergy & Anaphylaxis Connection Team (FAACT) is to educate, advocate, and raise awareness for families and individuals affected by food allergies and life-threatening anaphylaxis. FAACT is the brain child of CEO Eleanor Garrow-Holding, who has created a team of top U.S. advocates and a world-renowned Medical Advisory Board.

Garrow-Holding provides leadership for all of FAACT’s initiatives and programs, including conferences across the country, education for school and restaurant staff, and statewide legislation and civil rights advocacy for students. FAACT will also grow the very successful Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Garrow- Holding founded in 2009.

Among her work in the food allergy arena, Garrow-Holding served as vice president of education and outreach for the Food Allergy & Anaphylaxis Network for almost four years, where she presented at national and regional conferences about food allergy management in school and restaurant settings and educated personnel in schools and school districts across the country. She also advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) on Capitol Hill with her son and helped pioneer the School Access to Emergency Epinephrine Act that was recently signed into law by President Obama. She has been interviewed extensively by the media and has written for Allergic Living and Living Without magazines. She has also worked to increase food allergy awareness among staff at numerous food industry companies and entertainment venues, including McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, and all SeaWorld Parks.

“Many tragic and preventable deaths have occurred through the years from anaphylaxis,” says Garrow-Holding. “To think that a life can be lost simply by coming into contact with a food item is motivation in itself to arm and educate the community. Food allergy is a chronic illness and a life- long journey with social and economic challenges. FAACT will provide professional resources and guidance for families, peer-to-peer support, podcasts, webinars, restaurant and educational materials, civil rights advocacy, government relations, and so much more. We are linking our families to your families to ensure the safety for everyone affected by food allergies and anaphylaxis.”

By networking with other food allergy organizations, FAACT is also able to supply the most up-to- date resources and provide a more cohesive level of support to patients and families by some of the nation’s most dedicated advocates, all with personal connections to allergic disease.

The leadership base of FAACT includes civil rights attorney Amelia Smith Murphree, founder of “Food Allergic Children’s Education in Tupelo;” Karen Underwood Harris, president and founder at “Food Allergy Kids of Atlanta;” Thanita Glancey, president of the “Loudoun Allergy Network;” author Nicole Smith, president and CEO of “Allergic Child;” and Los Angeles media producer Yael Kozar, who leads “CA, Allergy Support & Anaphylaxis Prevention” and created “The Anaphylactic Allergy Podcast”.

For more information about FAACT, please visit www.foodallergyawareness.org.

Media Contact:
Yael Kozar, FAACT Communications and Media Relations  (310) 415-7180 or Yael.Kozar@foodallergyawareness.org

FAACT is able to consult on news stories and provide medical experts, spokespersons, and subjects while supplying up-to-date information on food allergies and anaphylaxis for your future media needs.

A Food Allergy Ah-ha Moment with the Holiday Meal

If your house is like ours at holiday time – managing food allergies with the holiday meal creates stress. Stress for us means arguments about what is safe for our son to eat, and what isn’t safe. Inevitably these stressful situations occur with extended family coming to our house for a holiday meal where we have entrusted others in the family to make safe foods.

holiday_dinner

Our son, Morgan, is almost 18 years old, so managing holiday meals isn’t anything new. We’ve concluded that eating at our house is a must. Other family members have dogs, cats, and others who have since passed away, were smokers. This is a recipe for disaster for our son and his asthma and allergies. The holiday meal is therefore the big issue to conquer.

We’ve always agreed that Morgan doesn’t eat food made by anyone else. Too many times well-meaning friends or family have tried to bake birthday treats or provide safe snacks for our son at a party. Unless the food has a label on it, we’ve always agreed that Morgan says “no thank you” and he eats the food we provide. We don’t know how others prepare food or what precautions they take in their kitchen. How well do they wash their baking pans? Did the spatula also pick up peanut butter cookies? There’s so many chances for errors in even the most well-meaning friend or family member.

But when it comes to family, it gets dicey. We can’t always cook EVERYTHING for the extended family and our family. That’s a lot of cooking and a lot of money to provide that much food. So, we ask them to bring certain foods, with a long list of “don’ts” attached: don’t bring anything with his allergens (peanuts, tree nuts, sesame, fish or shellfish), don’t bring anything that says “manufactured in a facility…” with any of his allergens, don’t make food at home – make it at our house in front of us – if you want Morgan to eat it. It’s a lot for others who don’t have food allergies to understand why all of this is necessary.

It’s taken years of education and plenty of discussions, and more discussions, to explain the seriousness of food allergies, and what happens when a mistake occurs. Our extended family has gotten really good at understanding what’s necessary to keep Morgan safe. Yet, do they understand enough to cook for him?

That brings us to this year’s holiday meal and celebration, which occurred for us last night. My husband had been the communicator with his brother and the family. When there was a change in the main course from a turkey to a ham, I began to get frightened. I was feeling uncomfortable with Morgan eating the turkey to begin with because it was going to be cooked at THEIR house! Now, with a ham there’s the glaze ingredients to worry about. My husband and I began a discussion about the issue, and brought Morgan in to determine how to deal with this change of plans.

Then I had an AH-HA moment!

Why are my husband arguing over this? Morgan is old enough to be responsible for this issue. He eats out with his friends and can manage restaurants. Surely he can get on the phone with family members and negotiate a safe meal for himself. It’s time for my husband and I to take a step back from all this and allow Morgan to self-advocate.

The result? The ham was cooked at our house; Morgan prepared the glaze after reading the ingredients and everyone had a wonderful time!

For future celebrations, Morgan will be on the phone talking with family members about the meal prior to the day of the celebration. My husband and I can find something else to argue about  😉  and we promised to not second-guess Morgan’s decision about what he eats. It’s up to him to keep himself safe.

Problem solved with everyone in agreement. Amazing!

 

Managing Food Allergies? Mistakes That We’ve All Made!

 

 

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Nicole Smith is the Founder of AllergicChild.com and the author of three best-selling children’s books about food allergies. Allie the Allergic Elephant: A Children’s Story of Peanut Allergies was her first foray into writing. She is an almost-native of Colorado, and continues to speak and advocate for children with food allergies at the state level and in her school district’s Food Allergy Task Force, in addition to writing a blog about living with food allergies on AllergicChild.com.

Gina Clowes is an author, speaker and Master Certified Coach whose advice and parenting tips have appeared in numerous print, radio and television features including CNN, ABC World News Tonight and People Magazine.  She is the author of the best-selling children’s book One of the Gang: Nurturing the Souls of Children with Food Allergies and writes a regular column The Parenting Coach for Allergic Living Magazine.

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Children with food allergies don’t come with an instruction manual, so it probably wouldn’t surprise you to know that over the years we’ve received thousands of emails and phone calls from parents struggling to manage their child’s food allergies. As our allergic children are both teenagers now, we have the benefit of hindsight.  We can easily spot common mistakes that parents make because we’ve made the exact same mistakes ourselves at one time or another.

If you’re like us, you’ve seen a lot of articles telling you what to do to help your child with food allergies at school, camp or on a sleepover. In this article, we’d like to try a different approach by outlining some of the most common mistakes that parents of food allergic children make. Our hope is that with a heads up and some advance warning, you can learn from our mistakes without the painful consequences.

Mistake #1: The Unprepared Parent

Nicole:

I really feel for the Mom who calls or emails me two weeks after school has started. She is likely to have a kindergarten student, and hasn’t done anything to prepare the school for her child’s allergies. Inevitably her child is contact allergic in addition to ingestion allergic, and therefore the child needs a number of accommodations. The school is overwhelmed and balking at everything she is requesting. This Mom is likely crying and overwhelmed herself. What did she do wrong? She didn’t prepare the previous spring before the school year started!

It’s unfair for a parent to expect a school/school district to be able to manage a child’s food allergies if they are informed on the first day of school! Lesson plans frequently need to be changed, epinephrine autoinjector training needs to be done…there are so many details that cannot be completed on the first day of school.

Gina:

Some parents think that a passing conversation they had with the nurse at the kindergarten registration or with the principal months ago laid the foundation for a safe plan for their child.

Then they are devastated when they find out that the bus driver is not trained and their child is sitting alone at lunchtime or during classroom birthday celebrations. These parents expect their schools to be ready to accommodate allergic children but in many cases, they’re not.

Developing an individual written accommodation plan is one of the most important projects parents will ever manage. It takes planning, education and dedication to see this through. A great place to start is by reading the CDC Guidelines for Managing Food Allergies in Schools to learn about the recommended practices for parents and school administrators.

Mistake #2: Ineffective communication

Gina:  Another issue I see with parents is that their communication style affects the process in a negative way.  I’ve received emails that are 300 words long in one dense block of text. And even upon re-reading, I’m not sure what the parent wants or needs.

Before you open your laptop, know why you are emailing.  Start with a concise request, and then fill in the details.  Then re-read your message to make sure that the tone is appropriate and that your message is clear.

Nicole:  I’ve found that I also need to read and re-read my emails to ensure that I’ve spelled everything correctly. Anaphylaxis needs to be communicated as a serious issue, and spelling it correctly – along with EpiPen, Benadryl, and Auvi-Q – are all important to ensure that school personnel get educated appropriately.

Mistake #3: Asking for too much

Nicole: When my son started kindergarten, our allergist wrote a letter to the school district 504 Administrator outlining exactly what he needed to remain safe in school. In our case, the main items were an allergen-free classroom and peanut and tree nut free zone in the lunchroom(figuring that most children wouldn’t be bringing in fish or sesame for lunch); and for kids to wash hands after lunch.

Had we asked for a peanut-free school without the medical support of our allergist, we would have been asking for too much. And in our son’s case, a peanut free school would do nothing for his tree nut, sesame, fish or shellfish allergies.

Gina: I am all for restricting food or allergens from the classroom, the learning environment, especially when there is a separate cafeteria. However, school-wide bans are often not a feasible food allergy management strategy especially when you are dealing with milk, wheat, or egg allergies.

If a district decided to manage food allergies with a school-wide ban for a peanut-allergic child, what would they do when they had a child who was severely allergic to milk and egg?

Would you ban a food for one child but not the other? Again, restricting food or allergens from the classroom is different and is an accommodation that can work well to foster inclusion and minimize risk of exposure.

Mistake #4: Taking on the burden of all accommodations yourself

Nicole: I made this mistake with my son at first. He was the first child with severe food allergies that our school district had ever educated. We were blazing a trail, and when the kindergarten classroom teacher wanted to hand out safe treats to all the students DAILY, I provided a safe snack for my son to have. I also provided safe cupcakes for birthday celebrations frozen in the school freezer for ‘just in case’ a party occurred! Today, I wouldn’t do that. I would ask that either all the students have no snack or I’d ask that every child get the same snack that would also be safe for my son.

Gina: What tends to happen is that teachers and other school officials think that when Johnny needs a treat due to an upcoming birthday celebration, it is his mother’s job to provide a safe one. When in reality, if the school is serving a free treat in class, there needs to be a free treat for Johnny as well, and it needs to be safe for him. For classroom parties and other school celebrations, schools are responsible for what is served in the classroom regardless of who bakes or buys it. This doesn’t mean that parents can’t send in “safe” treats for their child. This option should be available to parents, however it should not be a requirement.

Mistake #5: Disclosing Private Medical Information

Nicole: We probably disclosed too much when our son was in elementary school. We wanted for everyone to know about his food allergies so that he would be safe. The problem was that it backfired and our son ended up getting bullied because other boys knew where he was different. And kids being kids – they pounced on that! I’ve learned that it isn’t necessary to give all the parents, teachers and students the medical details about my son’s food allergies. Instead, it’s the school’s job to adhere to the 504 Plan and FERPA (Family Educational Rights and Privacy Act).

So, it’s not up to the parent to send out a letter stating, “my child has food allergies, please keep him safe.” The school needs to send out a letter stating, “we have students in kindergarten who have milk allergies, please refrain from sending in any food with dairy.” It’s best if this letter is signed by the school principal and/or school nurse.

Gina: Severe food allergies weren’t often recognized as a disability back then, so parents felt they needed to take on the entire burden themselves. They were trying to get classmates and other parents to understand in the hopes that they would protect the allergic child. They were asking for favors from the other parents to keep their child safe and included. I favor a more formal approach.

We don’t have wheelchair ramps, rails in bathrooms and handicap parking spaces because someone asked for a favor. Accommodations like these are made because they are the law.

It’s fine to educate all students about food allergies in general, and certainly kids can let their friends know about their allergies.  However, in my experience appealing to classmates is not the most effective approach to keeping your child safe and included at school.

Mistake #6: Not understanding the law

Gina: This leads into the most serious mistake that parents can make- not understanding the laws as they pertain to severe allergies in school.  When we have our first baby, we typically buy the book, subscribe to the magazines, and we read about the pacifiers, formulas and car seats. We acclimate to a whole new world. It’s a similar shift in reality when you have a child with food allergies, but some parents don’t buy the book, or read the reports.

Advocating for your allergic child in school is the most important job you will likely face. It is a huge undertaking that takes education and preparation. It’s a project. If you approach it casually, by chatting with this person and that person, by thinking you know the facts by comments you read on social media, you’re likely to start off on the wrong foot. When this happens, it’s difficult to right the ship.

If you haven’t started yet, I’d encourage you to start by reading the CDC Guidelines for Managing Food Allergies in School and Early Care and Education Programs.  Learn the laws and the recommended accommodations, plan how you will proceed, and document your steps throughout the process.

There is a concept called “Sensitivity to Initial Conditions” and this means that subtle differences in the beginning can result in wildly different outcomes at the end. I’ve seen this play out time and again with parents and schools.  Your initial contact with the school including the form and content of your communication, and your tone and demeanor lays the foundation for your relationship going forward.

Nicole: We were lucky that our school district understood the laws available to them in 2001 when our son started kindergarten. Additionally, my husband and I had an understanding that anything we agreed to with our school district needed to be in writing.

We relied on the 504 Plan and the Food Allergy Action Plan that were developed to keep our son safe and included. We started out on the right foot by having both of these plans prepared in the spring before he started kindergarten. The principal of the school and the school nurse together wrote the letter to kindergarten parents asking for none of our son’s allergens to ever be present in the classroom. This was met with much consternation on the part of several parents. Yet, these two school professionals took on our son’s medical condition with decisive action and kept my husband and I updated with any issues that they had to handle. It has been a partnership with the school district ever since between our family and the district staff. We had the law on our side, and thankfully a wonderful school district that was more than willing to abide by the law and to do anything necessary to keep our son safe and included.

When food allergy parents learn to advocate well for their child, they pave the way for every parent who comes after them. They makes it that much easier for the next parent and that much safer for the next child. Every conversation, every email, every EpiPen or Auvi-Q training is like a coat of paint that we apply and someday soon, we’ll have painted a whole new landscape: a world where food allergies are understood and accommodated everywhere.
 

Off to College with Food Allergy?

It’s hard to believe that our son, Morgan, is a senior in high school already! The topic of college is coming up frequently in our house. We continue to learn more and more about what information and laws are available for students with food allergies in college.

morgan_together

 

The Food Allergy Research Education (FARE) website has minimal information on sending your child with food allergy to college. They have two pages of info  here and here.

I can’t find anything about the Lesley University settlement and how it pertains to food allergic students from any of the major food allergy non-profit groups. The Lesley University settlement was initiated “around October 2009, <when> the United States Department of Justice (“United States”) received a complaint alleging that Lesley University (“Lesley” or the “University”) violated Title III of the Americans with Disabilities Act of 1990, 42 U.S.C. §§ 12181-12189 (“ADA”) by failing to make necessary reasonable modifications in policies, practices, and procedures to permit students with celiac disease and/or food allergies (collectively “food allergies”) to fully and equally enjoy the privileges, advantages, and accommodations of its food service and meal plan system.”

The University was requiring students to purchase a meal plan, yet the school had no way to safely feed the students. The Department of Justice determined that the University was in violation of the ADA (Americans with Disabilities Act) and mandated that they accommodate students on special diets. This settlement has implications for all colleges and universities, especially that celiac disease and food allergies can be considered a disability as defined by the ADA.

The National Foundation for Celiac Awareness has a great 2013 College Student Toolkit that explains the impact of the Lesley University settlement on students with celiac disease.

We’ve learned a few things in an attempt to find the ‘right college’ for Morgan. First off, he wanted a specific Engineering degree (Computer Science), so that helped him to narrow his choices. Then, we started visiting a few schools.

We learned that it’s important to contact the University/College Disability Services Office (or whatever that office is called at a particular school) as a starting point. The timing of this contact may be best AFTER the student is admitted into the school. We have found that dealing directly with the Housing and/or Dining Services office might yield incorrect/unlawful suggestions.

In other words, the Housing Manager at a Colorado school that we visited told our family that it wouldn’t be possible for our son to have a dorm room free of his allergens as a requirement/accommodation. My contact at the Office of Civil Rights stated that this is incorrect. A ‘reasonable accommodation’ (which is the standard that colleges are held to, not FAPE-Free Appropriate Public Education) would be an allergen-free dorm room.

You can also find out general information from the Housing and Dining Offices that would be pertinent to your child attending college: if cafeterias routinely post ingredient lists, whether their cafeteria workers receive any training about food allergies, whether the kitchen can accommodate special requests, if the dorm rooms have air conditioning (for students with asthma), whether refrigerators, microwaves or air purifiers are allowed in dorm rooms, whether freshman are allowed to live in an apartment rather a dorm. The list goes on and on – we know that there are specific items that Morgan wants in order to maintain his health and safety, and we asked each school our questions about the specifics.

We found that specifying accommodations is best left to the drafting of a written document with the Disability Service Office. Sadly, though, some of these offices have never dealt with a student with food allergies. You, the parent, and your child may be training them about what to do with food allergies.

Lastly, most Universities/Colleges that I’ve asked will not allow their staff/employees to administer an epinephrine autoinjector. Their only step is to call 911. The student will be either “on their own” or will have to rely upon training their friends to respond during an anaphylaxis episode. This is an important question to ask when you visit a college, and then determine how comfortable you and your child are with their answer!

Morgan has yet to decide where he’s going to attend college. We’ll keep you updated on his choice!

Kyle Dine – Food Allergy Performer Extraordinaire

Kyle Dine is a food allergy educator and musician. He has performed allergy awareness assemblies at over 300 schools across North America and has two CDs of music for children with food allergies. Learn more at www.kyledine.com

kyle-dine-allergy-concert-22b (2)                                              Photo credit- Debbie Mitchell Photography

Hello Kyle. Thanks for your willingness to be interviewed by AllergicChild.com! Can you tell us what food allergies you manage and have you ever experienced anaphylaxis?

I am allergic to peanuts, tree nuts, eggs, fish, shellfish and mustard. I have unfortunately had many allergic reactions, however one stands out as the most serious anaphylactic reaction. I was 21 years old and was given a snack by someone I knew who told me it was okay. My instincts told me that the treat (a brownie) was a weird thing to be safe for me, however I ate it assuming it was made safe for me. It contained cashews and turned out to be an unfortunate accident due to a breakdown in communication. I learned a very valuable lesson that day in that you can never be too careful. I triple check anything I am unsure about, even food from friends or loved ones. It was a wake up call to say the least.

How old were you when you were diagnosed?

I have had allergies nearly all of my life starting at the age of two. I was initially allergic to dairy foods and outgrew it. I grew into my mustard allergy as a teenager strengthening my bond with ketchup!

How did you learn to advocate for yourself growing up?

I will admit that I had a difficult time advocating for myself. I was a very shy kid and allergies were not so prevalent at that time. I did not know anyone else that had an allergy. This often made me feel like I was a burden to others as I wasn’t so “simple” around mealtime as everyone else. I would ALWAYS carry my EpiPen with me and wore a MedicAlert bracelet. As I got older, my parents started getting my friends more involved, which really helped. They all knew how to use my EpiPen, and really supported me. It’s so much easier to ask about ingredients at restaurants and advocate for yourself when you know your friends have your back and know how serious an allergic reaction could be.

I’ve seen your posts about being on tour. Tell us about your Anaphyl-What? tour!

I firmly believe that ALL children should be educated about allergies at a young age. This helps them understand what they are all about and builds empathy towards those who have allergies. My current “Anaphyl-WHAT? Tour” will reach tens of thousands of kids at 45 schools in only two months. My assemblies raise allergy awareness in a fun way. My shows feature lots of songs, trivia, game shows, and my puppets EpiMan, EpiMan Jr. and Chef Allérgy. Kids learn a ton in 45 minutes and will transform how they view allergies. My latest tour really emphasizes the word “anaphylaxis” to let kids know how serious allergies can be, without making it scary. I am posting about my experiences while on tour on my Facebook page.

You’ve traveled to China. How did you manage that trip with your food allergies?

That is a full article in itself! I documented all of my preparations on my blog at http://foodallergiesrock.com/category/allergies-in-china/. In a nutshell, the trip was challenging. However, I love travelling and refuse to let my food allergies ever get in the way of that passion. My wife and I brought a full suitcase of safe food with us and bought an electric hot plate when we arrived. We cooked rice, pasta, chili and other dishes on the floor of our small hotel room. We ate out once and found a pizza place where they spoke English, but still used an Allergy Translation Card. I am not a foodie and don’t even care that I missed out on China’s food culture. I got to understand their culture on other levels through museums, temples, wandering the streets and practicing a few very basic Chinese phrases with locals. It was a trip of a lifetime!

Your wife has celiac disease. How do you each stay safe while cooking in the same kitchen?!

When we first started dating we thought it was so cool that we both had such dietary restrictions! We’ve had each other’s back for a long time now and do everything we can to keep each other safe. We are clean freaks with our kitchen! I eat wheat still (to help cut down on gluten-free grocery costs), but have a separate toaster and cutting board. She eats eggs, but uses a separate frying pan. She loves nutella, but only eats it when I’m gone on tour.

What advice/experience can you offer a child who’s tired of being different and doesn’t want food allergies anymore?

I had the same talk with my young cousin who was diagnosed with tree nut allergy a few years ago. I understand that it’s a downer to not be able to eat delicious looking foods, or be excluded because of an allergy. However, I really play up the fact that this one thing makes you so special and unique. Empowering a child over their allergies involves showing empathy when they are down, but also involves cheering for their successes. I tell children with allergies how proud I am of them for wearing their auto-injector and how cool their MedicAlert bracelet looks. I ask them how they stay safe in difficult situations and applaud their efforts. In essence, I try to make a child feel like they are part of something bigger. Although it’s isolating at times, kids with food allergies are part of a club of amazing children who are actively helping to take care of their own health at such a young age. That’s something to be proud of.

Do you have anything else you’d like to add?

Just as one tour ends, another one will begin this spring! I will be visiting many states across the U.S. throughout March, April and May. Please feel free to visit my website for more information and get in touch! I would love to help make a more allergy aware environment at your school!

Sweet Debbie – from Accountant to Allergy-Free Baker!

Debbie Adler

 

Thank you Debbie for being willing to be interviewed by AllergicChild!

My honor and pleasure!

Your son has multiple food allergies. What allergies are you managing?

My 5-year-old son has life-threatening, anaphylactic allergies to dairy, eggs, peanuts, tree nuts, flax seeds, sesame seeds and shellfish.

It’s a big leap to go from being an accountant to a baker. Tell us about that transition.

The transition from accountant to baker took an alphabet’s worth of career moves from accountant to b-movie actress to comedienne to director of development to editor of a teen magazine all the way through zen yoga instructor. I won’t bore you with each job I had in between.

Then I started at a again to become an allergy-free baker when my son was diagnosed with allergies to almost everything in the USDA food pyramid. When I got involved with the food-allergic community, I realized there were millions of children in the United States alone that had these severe food allergies. I wanted to bake for them as well since I had already figured it all out for my son.

I see that you use unusual ingredients like Acai Berries and Coconut Nectar. Have you found that kids with food allergies have any trouble with these ingredients?

There is a misconception out there that a coconut is a tree nut because it grows on a tree and ends in n-u-t. But in fact, coconut is a drupe, or a one-seeded fruit. Therefore, if you have a tree nut allergy you can still eat coconut and all its derivations, including coconut nectar. Now, if you have a coconut allergy, and I know some people do, that is a totally separate issue. Acai berries are just like blueberries, but they come from Brazil. So if you’re not allergic to berries you should have no problem with acai berries.

Tell us more about your book “Sweet Debbie’s Organic Treats: Allergy-Free and Vegan Recipes from the Famous Los Angeles Bakery “

Hi res Book Cover_Debbie Adler

My cookbook contains all the recipes that I developed for my bakery, that took me years to develop, including those for cupcakes, cookies, brownies, muffins, energy bars, donut holes and breads. All of these are not only allergy-free, but also gluten-free and sugar-free as well.  I developed them with the goal of making them highly nutritious as well. So there is a lot of information about the alimental values of all the ingredients and each recipe contains information about calories, carbs, sugars, etc. per serving. There’s a lot of humor in it as well. Remember, I was a comedienne when I was up to the c’s in my career choices.

You’ve been on tour recently. Do you attract more interest from the gluten-free, autism or food allergy community?

It seems there is usually a mix of people, most of whom have none of the above issues, believe it or not. They just want to learn how to bake healthfully. But, of course, there is an epidemic of people who need gluten-free items lately so I would say after the general population, gluten-free audiences are my biggest and then the food-allergic.

What are your hopes for your bakery?

I hope my bakery continues to thrive and make delectable and safe treats for everyone who wants a baked good, no matter what his or her allergy or intolerance.

Is there anything else you’d like to tell us?

My customers all know that they are not sacrificing taste or pleasure when eating Sweet Debbie’s treats, but sometimes I find there is a prejudice when people hear that everything is dairy-free, egg-free, nut-free, gluten-free, soy-free and sugar-free. They think it can’t possibly taste good. I’d like to dispel that myth because it is not only possible, it’s imperative, otherwise I wouldn’t be in business.

Kissing & Food Allergies

When our son, Morgan, was diagnosed with food allergies at 18 months old, I never thought that kissing my child could cause problems! Yet, if anyone has eaten their child’s food allergens and then given a cheek buss – well, you may be in for a big surprise! Even that minimal contact can cause an allergic reaction in a highly sensitive child. Passionate kissing can cause full blown anaphylaxis. So, it’s important to know the facts of what works with showing affection for your loved one after you’ve eaten their food allergen(s).

In 2006, Dr. Scott Sicherer of Mt. Sinai researched peanut allergen exposure through saliva.  The research looked at how long the peanut protein remained in saliva. The protein is amazingly persistent, even after teeth brushing or chewing gum. The research conclusion was as follows: “Patients with peanut allergy require counseling regarding risks of kissing or sharing utensils, even if partners have brushed teeth or chewed gum. Advice to reduce risks, though not as ideal as total avoidance, includes waiting a few hours plus eating a peanut-free meal.”

Dr. Sicherer’s research did not involve cheek kissing or a “Grandma buss”. However I have heard from parents that their child has experienced welts, hives and/or a rash after receiving such a kiss when Grandma has just eaten the child’s food allergens. It’s vital to be cautious and for all family members to understand that even this small act of love can prove dangerous for a child with food allergies.

kiss

Once a child with food allergies becomes a teenager, that’s when the real fretting comes into play! I would encourage you and your teenager to speak with your allergist about this topic. This has also been a frequent topic at the Teen Summit. While it might be overwhelming for your teen to talk about kissing, keeping them safe supersedes potential embarrassment. When we spoke with Dr. Fleischer at National Jewish Health about kissing, he encouraged Morgan to have his date either not eat food that he’s allergic to or to eat another non-allergen meal and wait at least 2 hours after an allergy-laden meal. That could make for a very long date! Or, better yet, it makes for the necessity of having a conversation with his date prior to the day of the date.

Kids with Food Allergies has a great resource for Teens and Kissing here. The magazine, Allergic Living, has an article on the topic here.

I interviewed Sloane Miller, aka Allergic Girl, about her kissing experience that ended in anaphylaxis. Check out my interview here. Who would have thought that a beard would be the culprit!

Go out there and pucker up!

 

 

 

 

Why Your Child with Food Allergies Needs a 504 Plan at School

Through the years, I have received hundreds of emails and phone calls from parents asking if their child with food allergies needs a 504 Plan in school. From my experience, the answer is a resounding YES. Too many parents think that a 504 Plan is only written once things go sour with a school district. That is not correct! Or they think that their Health Care Plan is enough. That may be true, but the sad part is that you’ll only know if it’s untrue after a serious issue has occurred. Lastly, they think that since their school district has guidelines for food allergic children, their child’s teacher is already on board with food allergy accommodations. Sometimes that may be true, but when it’s not – it sure is nice to have a 504 Plan in place!

Your child needs a 504 Plan in place on the first day school starts. (By the way, your child needs a Health Care Plan too, and the staff needs to be trained how to administer your child’s epinephrine autoinjector. And all of this needs to be done prior to the start of the school year!)

What is a 504 Plan?

A 504 Plan is a written plan of accommodations for your child to safely attend school and to be included. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance. So, we’re talking about some food allergies being labeled a ‘disability’. 

A publicly funded school district must provide a Free Appropriate Public Education (FAPE) to each qualified student with a disability in the school district’s jurisdiction regardless of the nature or severity of the disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function (such as breathing or eating in the case of severe food allergies). There is no cookie cutter approach. Two children both having food allergies and a 504 plan would not have the exact accommodations in a 504 Plan. And there are some children who, when evaluated, will be determined to not need a 504 Plan. For example, a child allergic to goats will likely not require accommodations to be in a school classroom safely, while a child severely allergic to dairy likely will. The 504 Plan is written in a group setting of your child’s teacher(s), the principal, the school counselor, school nurse, the parents and the child (age appropriate). There may be others in attendance depending upon your school district’s policies.

How does a 504 Plan differ from a Health Care Plan/Allergy Action Plan?

Some school districts will use this language interchangeably. We use the Health Care Plan for the emergency actions to take in case of an allergic reaction; and the 504 Plan lists all the accommodations necessary for our son to be safe and included.

A Health Care Plan that includes written accommodations generally does not include procedural safeguards for parents to have should the plan not be followed.  A 504 Plan does include these procedural safeguards, and you will sign an acknowledgement at the end of the 504 meeting stating that you have received these. Should your child’s plan not be followed, pull out these papers and follow the items exactly as written to rectify the situation.

Why does your child need a 504 Plan?

From our experience, it has kept our son, Morgan, who is now a senior in high school, safe and included in school. If your child has a 504 Plan, it will not be acceptable for a teacher to ask you to keep your child at home while the rest of the class does an ‘unsafe’ activity. Instead, the activity will need to be altered so that your child can be included. A peanut butter birdfeeder project becomes a Crisco Oil birdfeeder project – and every student can participate!

From our experience, a required yearly meeting keeps everyone aware. Health Care Plans are supposed to be looked at yearly, but that doesn’t occur in every school. A 504 Plan requires at least an annual review which means that all the appropriate staff members are brought back together to discuss the necessary accommodations. Morgan always attended the annual meeting which provided additional information to the staff for what was working and what needed to be amended.

From our experience, written accommodations ensure that all staff know what is expected. If the school agrees to have the playground monitor take your child’s EpiPen to the playground every day, yet nothing is in writing, how does that information get passed on to the appropriate staff? Having a 504 Plan with that stipulation in writing ensures that the right people receive the right information.

From our experience, if/when the 504 plan isn’t followed there are procedural safeguards. When we have had issues with a teacher not following our son’s Plan, we have had a discussion with her. Then if the plan still isn’t followed, we’ve contacted her supervisor. This has only occurred once in 13 years of having a 504 Plan. But all it took was the statement – “this is stated in Morgan’s 504 Plan” to have the issue fixed instantly. No school wants to be reported to the Office of Civil Rights. Ultimately, if a 504 Plan isn’t followed, and the school/school district doesn’t provide a solution, that’s where the issue can go to be resolved.

If there are any accommodations necessary for your child to attend school, ask your school district to evaluate him/her for a 504 Plan. You’ll be glad you did!

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More Resources about 504 Plans:

http://www.wrightslaw.com/info/sec504.index.htm

http://www2.ed.gov/about/offices/list/ocr/504faq.html

http://blog.foodallergy.org/2013/08/19/what-every-parent-needs-to-know-about-section-504-plans/

http://home.allergicchild.com/food-allergy-504-plans-title-ii-and-k-12-schools/

 

 

What works to keep food allergic children safe in elementary school?

Since my son, Morgan, is now starting his senior year in high school, we’ve had a lot of experience with the anxiety of the start of the school year. It’s much better now, but I so remember the fear that I might miss something that would be the key ingredient in keeping him safe at school!

Bob's Business Trips 2006 107

Hopefully, you have already visited your child’s elementary school and let them know (preferably last spring) that your child has food allergies and will be entering kindergarten – if that’s the case for you – or will be back for this school year with food allergies that need to be managed.

If your child has been homeschooled until elementary school, there will be an adjustment period for both you and your child. With our son’s experience in preschool being so positive, we wanted to continue that trend in elementary school.

There are generally a lot more children in an elementary school, multiple classrooms where your child will be, and likely a playground that is much further away from the office (where medications may be kept) and less monitoring on the playground than what occurred in preschool.

Here are some suggestions that we’ve found vital to keeping your child safe in grade school:

Set up a meeting with the principal to discuss your child’s needs and allergies.

Again, hopefully you’ve already done this last Spring. If not, make an appointment today! You don’t want to show up on the first day of school with an EpiPen and trying to tell the teacher how to care for your child while he/she is learning the names of 25 students. That isn’t fair to the teacher nor to your child.

Most public and private elementary schools today have dealt with a child with severe, life threatening food allergies. Other food allergic parents may take a more laid back approach which can cause confusion for a school administrator when you request more vigilant food allergy awareness and procedures. Do what’s right for your child based upon the advice of your doctor!

Have a letter from your allergist/physician stating the accommodations needed 

Your child may need an allergen-free classroom because of contact reactions to peanuts, for example. Your child might need a milk-free zone in the cafeteria for lunch. Your doctor has the best knowledge about your child, and should therefore put in writing what will be necessary for your child to safely attend school and to be included in all the academics.

Become knowledgeable about the laws available to manage food allergies

Public schools (those who receiving funding from the US Government) must provide FAPE – Free Appropriate Public Education. The term ‘reasonable accommodations’ was believed to be the standard in years past, but this standard is for colleges and employment. FAPE applies to children with food allergies.

Private schools likely do not receive funds from the US government, and therefore are subject to a different standard than are public schools. There are private schools that are willing to accommodate children with food allergies; however public schools are required to do so. Schools receiving government funds must comply with the Individuals with Disabilities Act (IDEA), Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA). The ADA Amendments of 2008 no longer focuses on the disability but on what services a person needs. The 2008 amendments expanded the list of major life activities.

Have a Health Care Plan/Food Allergy Action Plan 

The Health Care Plan, also called a Food Allergy Action Plan, specifies the steps to be taken in the case of an allergic reaction. Distinguishing between the severe allergic reaction and the mild allergic reaction is very important. The school nurse may not be present at your child’s school every day. Therefore, someone not in the medical field would be responsible for noting the reaction and determining the correct course of action. The school nurse would be responsible for developing the Health Care Plan, and for training specific personnel.

You will want to have this plan in place BEFORE the school year starts. Also, EpiPen® training MUST occur before the first day of school. Children can have reactions at any time. Waiting until the second week of school, when things calm down for teachers, may be too late for your child in an emergency. Make sure to include a photo of your child so that all staff will know not only your child’s name, but what your child looks like!

Ask that your child with food allergies be evaluated for a 504 Plan

A 504 Plan isn’t just for those students who can’t get what they need to be safe at school. In other words, it doesn’t have to be a contentious relationship for your child to need a 504 Plan. A 504 Plan is provided so that your child can enjoy inclusion in all activities, and have the accommodations in writing. It’s a way for all the parties involved to have agreement.

Volunteer at your child’s school

Seeing what goes on in the classroom is vital to knowing how many times food is a part of the lesson. You can help provide examples of alternatives for peanut butter birdfeeders or sesame seed art projects.  Also, the staff gets to know you – and how nice you really are!

What makes an outstanding Food Allergy Aware School?

A school with outstanding food allergy awareness is willing to 1) provide accommodations in writing for your child for their specific allergies, 2) admit what they don’t know and learn, 3) follow a written health care plan (provided by your doctor) that outlines the steps to take if anaphylaxis were to occur, 4) train all necessary staff on the use of epinephrine, 5) have a school nurse in the building at all times, 6) include your child in every activity possible including field trips, 7) educate the community about food allergies, 8) refuse to allow any bullying behavior regarding food allergies, 9) find ways to celebrate without food and 10) stand up to parents (and educate them) who say that food allergies are ‘hogwash’!

Our school district has done all of the following except for having a school nurse in the building at all times. The middle school my son attended did have an almost-full-time health aide, but the elementary school did not. It still worked with the front office staff becoming thoroughly versed on allergic reactions and how to administer an EpiPen. Good luck to the start of your child’s school year!

The History of “Allie the Allergic Elephant: A Children’s Story of Peanut Allergies”

 

Back in 1999, when my son, Morgan, was preparing to attend preschool, I began the search for an age-appropriate book for him to share with his classmates about his peanut allergies. He also had several other food allergies, at that time, but his contact reactions to peanuts made it the most worrisome. Sadly, there were no children’s books about food allergies anywhere. I came up with a wild idea that I would write a little book about peanut allergies that would teach the other preschool children why Morgan wouldn’t be sharing their snacks and that would also explain to them what an allergic reaction looked like.

I thought about what animal was always known to eat peanuts – an elephant of course! I sat down one afternoon and created the text to the entire book based upon the multiple times that I had explained to babysitters what an allergic reaction might look like.

Since I’m no artist, I asked a then-middle school neighbor, Maggie Nichols, if she could draw some pictures to go with each of the pages in the book. We put all this together in a spiral bound book to send with Morgan to school. The kids loved the book, as did the teacher. In fact, the preschool assistant told me that she learned a lot about peanut allergies from reading the book to the children!

My daughter is 5 years older than Morgan, and was in 3rd grade when Morgan started preschool. Her grade school was having an art fair, and the librarian asked me if I’d be willing to do a book signing for the event. I jumped at the chance to showcase “Allie.” To my surprise, our local newspaper wrote an article about my book signing, complete with a picture of the book cover. It looks a little different than now!

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That newspaper article ended up being picked up by two dozen newspapers across the USA and Canada. I began getting calls from people wanting to purchase the book. They also wanted to talk about peanut allergies and how was I managing day to day? It opened up our world to help others. In 1999, the Internet wasn’t the knowledge base that it is today. We had felt very isolated trying the manage food allergies. No one in our community knew what we were talking about when we shared that our son had life threatening food allergies!

Our initial printing of 300 spiral bound “Allie” books sold out! We tried to get a publisher to print the next printing to no avail. No one was interested in a first time author. Nor were they interested in backing such a niche market. So, my husband and I funded the publishing and printing of the book.

We decided to start AllergicChild.com as a vehicle to sell the book, and to share our experience of living with food allergies. AllergicChild.com came into existence in January of 2000. As they say, “What a long, strange trip it’s been”!!

Since then, we’ve updated the pictures of the book with the same illustrator, Maggie Nichols, who grew up and grew into quite an artist! We’ve sold thousands of books through three editions to date.

“Allie” is now available in Kindle format too – just to keep up with the times. As for me, I still prefer “Allie” in its book form. There’s something special about reading a book to a child sitting in your lap. And reading a book about managing peanut allergies is even better!

Summer Camp & Food Allergies

When our now 17 year old son, Morgan, was very young, I never signed him up for day camps, and I never allowed him to sleep overnight at a camp for fear of the food involved. As he aged, he began to want to participate in these activities. He also had more of an ability to monitor the food and to determine if an activity was safe for him as he got older.

Day camps frequently are run by volunteers and/or high school age kids in our area. These types of camps include art lessons, church camps, Cub Scout day camp and music camps. We have found this to be a hazardous situation in most cases unless my husband or I participate. There are many wonderful activities in which to participate during a 4-hour or 8-hour day camp, however most volunteers are unaware of how to manage children with severe food allergies and possible allergic reactions. And during that time period, lunch or snacks will inevitably be served.

Having the ability to explain food allergies the day one arrives at a camp and teach every adult how to administer an EpiPen® isn’t likely to occur. We’ve found it virtually impossible to prepare in advance for these day camps, since the volunteers show up only on the very day of the event. We therefore participated as Den Leaders for Cub Scouts, or as an adult volunteer with any of these activities. That afforded us the opportunity to monitor the food, which allowed our son to be a participant.

Day camps hosted by a local school district or college have been very positive for us. I have completed the necessary paperwork to sign Morgan up for camp adding a copy of his Health Care Plan and 504 Plan and asking that the person in charge contact me. Then, I have gone to the location to train one or numerous individuals how to operate his EpiPen® prior to the first day of class. We’ve then had the opportunity to discuss necessary accommodations, and what to do in case of emergency. Morgan has participated in numerous of these types of camps, and has never had an allergic reaction. I think the difference between these day camps and the previously mentioned ones is that there is a qualified teacher in charge!

As Morgan aged, day camps geared toward a sport such as golf have proven to work well. One of the reasons this did work so well is that the golf pro and assistants never changed. We could train all of them how to use the EpiPen® on the first day of camp, and feel comfortable that no new faces would be teaching golf by the end of the week.

One summer, Morgan volunteered as a swim instructor at a local pool. He was in the water for 1 ½ hours per day with the 3-6 year old kids helping them learn to swim. There wasn’t any issue with food at all, since there’s no food in the water! We do choose his activities carefully, yet as a teenager he’s so much more able to monitor the food that does appear.

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In regard to overnight camps, we’ve had very good luck. My son has gone for a week to the local YMCA camp and for a week to a Boy Scout Camp with much preparation beforehand. He even attended the Boy Scout National Jamboree in the summer of 2010 for a total of 17 days! These camps are more likely to have medical personnel on staff, and are manned by paid employees. There are medical forms to be completed prior to camp. We can list all his food allergies and the daily medications required to keep him properly medicated.

We specifically include EVERY medication that he might need or will need during camp, and we send all of those with him with a written explanation of doses and possible reactions. Our son has to remember to go to the nurse’s station to receive the medication, and he is old enough and responsible enough to do such. If your child is likely to forget their medication, some camps are better than others in reminding campers to take their meds. A really good camp will have a system for kids to be reminded without unnecessarily drawing attention to them.

The YMCA camp called it the “Secret Service” which was the cue for all kids who needed to take meds to head to the nurse’s office. This was a very nice way to keep medications discreet and keep campers properly medicated.

To prepare for overnight camp, I spoke with the EMT in charge of the YMCA camp a month prior to my son’s arrival. I described the medicines he would be bringing, and that he would also bring his own food. The EMT assured me that every camp counselor would know of my son’s allergies and also that they were all taught how to administer an EpiPen® should the need arise.

They served peanut butter only to those children who wouldn’t eat anything else, and it was carefully monitored at a separate table. My son had friends from school joining him for the week at camp who all understood his food allergies and all knew that no peanut butter could be eaten near him. They were a wonderful support, and exclaimed that the food brought from home looked better than the camp food!

Before choosing an overnight camp for your child, make sure that you and he/she are ready to take on this big step! Food allergies add that extra amount of precaution and potential worry that other first time campers don’t have to experience. It’s hard enough to sleep away from home for the first time, so worrying about food allergic reactions shouldn’t be part of any potential upset. Morgan was ready to handle any situation that arose, and knew the safe adults he could speak with should a reaction occur.

Earlier this summer, Morgan stayed at Colorado State University in Pueblo for Boys State, a week long summer camp about government. He initiated the calls to the Camp Director and spoke with the Nurse on staff prior to going to camp about his medications and their awareness of anaphylaxis. He also called the Chef on duty to speak with her about the possibility of safe food. I listened in on that phone call just to ensure that everything from cross contamination to ingredient listings was covered. For the first time ever, he was able to eat the camp food! The President of the University has Celiac Disease and the awareness of the kitchen staff was amazing about food allergies. Morgan learned the right questions to ask, and how to prepare for camp – a skill he will need for the future!

Experiencing Anaphylaxis

When our son, Morgan, was diagnosed with life threatening food allergies, we were lucky that he had ‘only’ previously experienced a mild reaction to touching peanut butter and had experienced a moderate reaction to his MMR vaccine. The combination of these two events caused our family care physician to realize that Morgan’s allergic reactions were beyond his medical training. He sent us to an allergist who diagnosed Morgan with several life threatening food allergies.

By following up unidentified sources of mild to moderate reactions with blood and skin prick tests, we discovered Morgan had more and more food allergies – all likely to cause anaphylaxis. At 10 years old, he had a diagnosis of peanut, tree nut, sesame and shellfish allergies. Some of these he hadn’t even eaten – he had only touched them!

At 3 years old, he had tested negative to fish, which allowed us to falsely assume he could eat trout on a camping trip the summer before his 5th grade year in school. This ended with the life altering experience of anaphylaxis. You can read about Morgan’s story here and about my husband’s story of the camping trip here (go about half way down the page).

For anyone with diagnosed food allergies, there is a possibility of anaphylaxis. Those at the highest risk for life-threatening food-induced anaphylaxis and resulting fatality are adolescents and young adults; people with known food allergy and a previous history of anaphylaxis; and people with asthma, especially with poorly controlled symptoms. Peanuts and tree nuts cause the majority of fatalities from food-induced anaphylaxis. Fatalities are also associated with delayed use or improper dosing of epinephrine.

Our son is now 17 years old, with a previous experience of anaphylaxis, has asthma (controlled at the moment), and has peanut and tree nut allergy. He has several strikes against him, so he ALWAYS carries his two EpiPens! He was old enough when he experienced anaphylaxis that he well remembers the symptoms. Some children who experienced anaphylaxis as a baby may not remember the experience. By the time they get older, they forget why their food allergies are a big deal. If your child is in this category, help them to remember by discussing with your child and your allergist why food allergies need to be taken seriously. We’ve found that doctors can get points across that we parents never can.

Your child may not yet have experienced anaphylaxis, in fact only 38.7% of children with self-reported food allergy have. This is another sub-set of food allergy patients. Sadly, they are frequently the families we read about who neglected to carry an EpiPen with them any more. Or they didn’t read a food label and just figured a product was safe. Or they never realized how serious food allergies are. Then, the child experiences anaphylaxis for the first time and is not prepared with medication to counteract the effect of the allergen.

For those of you who have experienced anaphylaxis with your child – and believe me it feels that way! – I don’t have to explain the terror of the event. I felt as if our world had tipped over. I just read the Summer 2013 edition of Allergic Living in which Gina Clowes, Parenting Coach, wrote about how to help your child after an anaphylactic reaction. It’s a great read and I’d highly suggest it.

While it’s difficult to move on after experiencing anaphylaxis, we felt it was important to allow our son to continue to live his life – go to school, participate in Boy Scouts and go on camping trips again. We also are keenly aware of what can happen with just ONE BITE of an allergen! We live and learn. And Morgan ALWAYS carries his 2 EpiPens just in case!

Food Allergy Bullying – What’s the Solution?

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There has been an abundance of publicity surrounding Food Allergy Bullying recently. My now 17 year old son, Morgan, experienced bullying around his food allergy in first grade, so I certainly empathize with this problem. What concerns me, however, is that it appears that news organizations, research and a public service announcement continue to focus on the problem and not on a solution. With many more years of parenting under my belt, experience of what does work and a long term view of bullying, I want to share some solutions to Food Allergy Bullying.

First, let’s look at some of the history.

In October 2010, a research study by Dr. Scott Sicherer and Anne Munoz-Furlong (then CEO of FAAN, the Food Allergy & Anaphylaxis Network) and others, published a study of bullying among pediatric patients with food allergy. Their calculation of the percentage affected: “Including all age groups, 24% of respondents reported that the food-allergic individual had been bullied, teased, or harassed because of food allergy.”

The Food Allergy Bullying publicity was refueled with a research study reported in the January 2013 Pediatrics Journal of the American Academy of Pediatrics that cited “31.5% of the children and 24.7% of the parents surveyed reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates.”

FARE (Food Allergy Research & Education) created a Public Service Announcement about Food Allergy Bullying: It’s Not a Joke, and a recent New York Times blog post by Catherine Saint Louis called “In Bullies Hands, Nuts or Milk May Be a Weapon” furthered the discussion of this issue.

All of these sources talk about the problem of food allergy bullying, which does raise awareness about food allergies in general. The raising of awareness is a good thing, and I will certainly agree that Food Allergy Bullying is a problem. However, none of these sources are providing a solution to it. Emotional stories about children being bullied pull at our heart strings. They cause fear for parents of children with food allergies, especially if those children are young and not yet in school. Parents of young children who hear only that the school cafeteria is a scary place have expressed to me “that’s why I’m going to homeschool my child.” Rather than scaring parents (and children for that matter!), or allowing parents to think that the only solution to Food Allergy Bullying is to homeschool – let’s start talking about what parents and children with food allergies can do. And what schools and school employees can do. Let’s stop talking about fear and start talking about the existing laws, accurate statistics and empowering our children. Fear and frothy emotional appeals gain headlines, but they don’t help our children to live in a world that doesn’t yet understand the seriousness of food allergies. Let’s be educators ourselves, and talk solutions.

What are the solutions to food allergy bullying that we need to be talking about?

We need to be talking about the laws that are available for children with food allergies in schools. 

  1. A child with a food allergy has the right to an evaluation for a Section 504 Plan by the public school district where the child will attend school.  This Plan will list the accommodations necessary for that child to receive FAPE – a Free Appropriate Public Education. The ADA Amendments Act of 2008 have made big changes to what is considered a disability in school. The ADA no longer focuses on the disability but on what services a child needs. The 2008 amendments expanded the list of major life activities to include eating. While many parents take exception to the label ‘disability’, we’ve found that the benefits of having a 504 Plan in school include inclusion and safety. The old idea of having Mom ask the teacher nicely to not have allergens in the classroom is passe. If your child needs accommodations such as a peanut-free classroom, get it in writing in a 504 Plan. If another parent or child takes exception to the peanut-free classroom, they can deal with the principal of the school. As a food allergy parent, you shouldn’t have to deal with an upset parent who can’t send in Snickers bars for a classroom treat. That’s the job of the school principal. This keeps you and your child anonymous, and therefore much less likely to be bullied.
  2. The Family Educational Rights and Privacy Act (FERPA) is a Federal law that protects the privacy of student educational records. A school employee cannot tell ‘everyone’ about your child’s food allergy. In fact, the school employee will only tell those who need to know – for example, the school nurse, principal, teacher(s). Additionally, it has been our experience that not every parent and child in your school needs to know that your child has a food allergy. Telling close friends is important. The old idea of having Mom stand up in front of the entire school to tell everyone that your child has a food allergy is not only not helpful, but can be harmful for your child if it puts a target on him or her. Again, keeping your child’s food allergy on a ‘need to know basis’ keeps your child anonymous and much less likely to be bullied.
  3. Educate yourself about your state’s anti-bullying law and your school district’s anti-bullying policy. Every state, except for Montana, has some type of school anti-bullying law. These laws could certainly be widened to cover food allergy bullying specifically. When Morgan was bullied in first grade by another first grade boy waving a cracker saying “I’m going to kill you with this peanut butter cracker” the incident was taken seriously as a bullying incident. Within one hour, the ‘bully’ was suspended from school by the principal. His parents were brought into school and educated about food allergies. This was in 2002, long before there was food allergy awareness. Our school district has an anti-bullying policy, and our principal followed that policy. It made no difference that the offending item was food – the behavior was bullying.

We need to have accurate statistics – not just self-reporting.

Colorado captures bullying statistics based upon any child that is in  a ‘protected class’  (race, color, religion, disability, sexual preference, etc.) I’ve spoken with the Director of Legal Relations for our school district who stated that with disability as a protected class in Colorado, a child with food allergy who is bullied in school, should have a report sent to the state detailing the bullying incident. There is more work to be done to educate the educators about food allergy as a disability, and therefore as a protected class. The research cited above about the statistics of Food Allergy Bullying are all based upon self-reporting or parent-reporting. I’d much prefer to have exact statistics rather than self-reporting which tend to overstate what is occurring. Again, this creates fear for parents of children with food allergy, who end up believing that their child has a much higher chance to be bullied than what may be true.

We need to empower our children and quit the fear mongering.

My friend, Dana Gordin, wrote an article for Today Moms entitled “A Family’s Battle Against Food Allergy Bullying” where she discussed their family’s experience of empowerment. My son, Morgan, and I were interviewed for Health Day last year about the topic also. A quote from this article is a key part of the empowering solution: “The incident involving Morgan Smith, who is also allergic to tree nuts, sesame, fish and shellfish, was taken seriously at his school. The boy who chased Morgan was suspended for the day. He never bullied Morgan again, and the two even later became friends.”

My son never viewed the school cafeteria as a scary place. He wasn’t afraid of his classmates, nor was he afraid of his food allergies – even after he experienced anaphylaxis at age 10 to fish on a camping trip. We helped Morgan to make choices – safe choices – for his life. He viewed the bullying incident as a minor part of his childhood. After the bullying incident, we didn’t move to a new house, or pull Morgan out of school. In fact, he and ‘the bully’ became friends, and the boy became one of Morgan’s biggest advocates. This boy’s house was the only place Morgan could go for a sleepover, because the family understood food allergies so well. They are friends still today.

Morgan had other instances of children in grade school harassing him because of his food allergies. The school principal took those incidents seriously by calling in the parents and educating them, and by suspending a boy in 4th grade who wouldn’t move out of the peanut-free zone in the cafeteria with his Butterfinger bar. Our family continued to work with the school and school district to raise food allergy awareness. I sat on numerous committees within the school and PTO, and in the school district on the District Accountability Committee. This allowed other parents and district employees to get to know me. I became known as “The Food Allergy Lady.” I’ve certainly been called worse! When I suggested that a Food Allergy Task Force be created in our district to help increase food allergy awareness, the superintendent agreed. The Task Force continues to this day helping to ensure that the district guidelines for keeping food allergic children safe at school are followed, and that we continue to raise awareness about food allergies.

Morgan continued to self-advocate throughout elementary and middle school. Now in high school, he teaches his friends how to operate an EpiPen, how to help keep him safe during lunch and on overnight trips with his high school Speech/Debate team. Morgan isn’t afraid of living. He has food allergies, but his food allergies don’t have him.

Empower your children. Utilize the laws available for your child with food allergies. Don’t buy into the fear. Believe in the power of forgiveness. A bully might become your child’s friend and a food allergy advocate!

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Emergency Planning for Food Allergies & Asthma

There have been several events across the USA this Spring – the Shelter in Place in Boston, the tornadoes in Oklahoma City and the fires here in Colorado – that bring to mind the need for each food allergy family to have an Emergency Plan.

Your child no doubt has an Allergy Care Plan (or some similar name) for school. Does your family have an Emergency Plan for any of the possible emergencies that your community could face? You may be required to remain in your home, as those residents in Boston, MA had to do after the bombings. Or you could face the destruction of tornadoes or fires where you will have to evacuate your home – either temporarily or permanently.

Until last year in Colorado Springs, we never thought we would have to evacuate our home for any reason. We have had to prepare for blizzards, where we ensure that we always have enough safe food for at least 3 days to last out the storm. However, we don’t have earthquakes, hurricanes, or tornadoes. And until last year, we never had a major fire in our area. Now, two years in a row, we’ve had life altering fires where hundreds of people have lost their home and thousands have been evacuated. At least three families who lost their home in the Waldo Canyon Fire in 2012, moved to Black Forest, and lost their home again in that fire this past week!

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 The Black Forest Fire within 3 hours of starting to burn

We have come to realize the importance of having an emergency plan for our family. In the case of the recent Black Forest fire, all roads in the area were closed within 2 hours of the fire beginning. Once evacuation orders were put in place, the fire was bearing down on people so quickly that they only had 10 minutes or less to grab their essential items.

Would you know what to grab in that amount of time? Do you have a safe place to be able to take your family? When you vacation, do you know the possible threats facing the area where you are staying? These questions and more need to be part of your plan.

We have a ‘grab and go’ large folder for our “10 minutes and out the door plan”. This folder contains: our wills, recent tax returns, account numbers listing, passports, safe deposit box key, cash and other important paperwork.

If we have more time, we’ve learned to bring and do the following:

Understand Evacuation Terminology.  These definitions have been used throughout the fire evacuations in Colorado. We’ve learned to tune in to the radio and local news reports, Facebook and/or Twitter to keep up with the advancing evacuation notices AND to remain at home if we are placed on pre-evacuation with all items packed and ready to go.

  • Pre-Evacuation – No immediate threat, but the danger may be moving closer; Prepare for possible evacuation.  Pre-evacuation means there is no immediate danger to your home, family, or business, but the threat may be moving toward you.
  • Voluntary Evacuation – The danger is moving closer and a mandatory order may be issued at any time. Officials say you do not need to wait for a mandatory order before leaving.
  • Mandatory Evacuation – Leave now. You will not be allowed to return until after the threat has passed.

The 5 P’s: People, Pets, Photos, Prescriptions and Papers.  We don’t have pets, but if you do many evacuation centers won’t allow your pets to stay if you aren’t there with them. Hotels may not allow pets. For us, prescriptions were our big deal. Some prescriptions are very expensive, and we didn’t want to lose this investment when we evacuated last year. We also grabbed Morgan’s 504 Plan paperwork file and his Allergy Testing history file.  Sure these could be recreated, but what a lot of work that would have been! If your child’s asthma care plan isn’t committed to memory, you might also want to bring that with you.

Have a written list of evacuation items in addition to the 5 P’s. Have everything written on a list of what you would bring should you need to be evacuated. It’s so difficult to think of everything you need to bring in the middle  of a crisis. This list could include clothes, computers, hard drive back ups, phone chargers, checkbooks, purse.

Plan for your relocation. Know where you can go and what type of an arrangement you will need. Can you go to a shelter and have your child safely eat their food? Are you comfortable eating out every meal by going to a hotel? If not, what types of condos or extended stay hotels are in your area? Or within 100 miles of your area? Is it safe to stay with a family member?

Bring Food with you. If you have ordered special food online, you certainly want to bring it with you because you likely won’t be able to have it mailed to you in time wherever you are staying. Even businesses, like specific grocery stores, can be in an evacuation zone. So if you get food from just certain stores, keep some on hand at all times.

Be prepared to be gone for more than 72 hours. The officials told everyone here to pack enough clothes and supplies for 72 hours. Obviously those with burned homes won’t be back in a rebuilt home for probably a year or more. And others in the neighborhood won’t be allowed back in for months because of the gas and electric lines needing repairs. Many of them only packed for 72 hours and have had to get clothing, prescriptions and other supplies while they wait to be able to go home.

Bring your nebulizer and peak flow meter even if they haven’t been needed recently. We learned this one the hard way last year! It would have been much easier to have had these items with us than to have to race off to the doctor’s office. Lesson learned!

Plan for a rendezvous point. If your family members become separated, have an established location where you will meet.

Having a plan in place will help you and your family to prepare for the worst, and hope for the best – that you’ll never have to put your plan to use!

 

Here’s To Success For All Our Children

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This is our daughter, Michaela, on her first day of Kindergarten in 1996. It’s been a long road of education since then!

We didn’t know that Michaela would come to be diagnosed with several learning disabilities, or that she would also have multiple broken bones from osteopenia caused by celiac disease, or that all the stomach aches she had for years wasn’t because of anxiety about school, but rather from a mast cell disorder.

We were new parents to a second child, Morgan, who on that day was just 7 months old and yet to have his first allergic reaction.

I hear from so many of you who manage children with food allergies in addition to diagnoses of Eosinophilic Esophagitis (EoE), Celiac Disease, Attention Deficit Disorder, Dyslexia, Autism and more. Sometimes all of these diagnoses are in one child, or they span multiple children – all with different needs, and many times with different food allergies! It’s not easy on us parents, and it can become very disheartening if you’ve heard messages from teachers or others similar to what we’ve heard, “Don’t expect too much from her.”

My husband and I did and do expect a lot from our two children. We expect them to listen to their bodies and to honor their physical needs – to carry EpiPens and Benadryl always, to eat safe food always, and to take their medication appropriately and consistently. We expect them to listen to their brain and to challenge themselves academically – to try their hardest even if they receive a grade of a “C” or worse, to go to school every day and to try to learn. We expect them to listen to their heart and to follow their passion in life – to be of service and helpful to others and to treat others with respect even if they haven’t received that in return.

We encourage them to find a higher power in their life that brings them joy and peace. We encourage them to love and value each other and to spend time together. We empower them to self-advocate for their needs with their friends, family and especially at school. We empower them to question the adults in their life, because sometimes even an adult doesn’t know the safe food to feed them.

Mostly, we enjoy them. We enjoy their sense of humor; we enjoy laughing and laughing until we cry; and we enjoy the life that all these challenges of so many diagnoses have provided to our family. All of these things together have made our children who they are.

When I heard a psychologist say to me “Don’t expect too much from her” when my daughter, Michaela, was in 3rd grade – I didn’t have the 22+ years of parenting under my belt that I do now! I had just heard a list of diagnoses a page long from the experts in a “child study” the school performed on my daughter. We knew she was having difficulties in school, but even that list of diagnoses the experts provided didn’t include celiac disease or a mast cell disorder which she was diagnosed with later.

She struggled for years with dyslexia, for which we got her a reading tutor; ADHD, for which we determined to not medicate her but instead to completely change her diet away from foods with preservatives, colorings, sugar and caffeine; and an auditory processing disorder, for which we obtained a 504 Plan, along with the other two conditions. This combined effort still didn’t create ease and comfort for her to attend school. It took until high school to get the diagnosis of celiac disease. By that time, the enamel on her teeth had worn off, and she had suffered multiple bone breaks in her arms and toes! She was in college before she got the diagnosis of the mast cell disorder.

Michaela expected a lot from herself despite everything that she was experiencing. We didn’t focus on what she couldn’t do well. We helped her to focus on everything that she could do – like laugh at herself when she made a mistake, think outside the box on school projects, intuitively know how others were feeling, and encourage her to embrace being different in her thinking processes.

I remember when Michaela graduated from high school. We were on our way to the graduation ceremony when she said, “I’m so glad I’m done. The last good year of school was kindergarten!” If that doesn’t make you feel terrible as a mother! Yet, she signed up to go to college at a local community college, and found that the college lifestyle fit her needs much better. She could schedule her classes later in the day, when she was ready to go to school. She could focus on an academic area of her choice – Communications (she was always good at talking, having gotten many infractions for chatting in grade school!) She started to understand that she was good at school when she could ‘do school’ the way it fit her.

She transferred to a larger school, the University of Colorado at Colorado Springs (UCCS), for her last two years. She didn’t like this school nearly as much since the classes were larger, and the professors not near as caring. However, she kept going, while working two jobs, and graduated in May with a GPA of 3.3! What a wonderful accomplishment for a child with so many diagnoses!

 

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If you’re wondering if your child can do this – I assure you they can! Take it one day at a time, love your kids, be proud of their accomplishments however big or small. Don’t let a few diagnoses alter your hopes or your child’s hopes for the future.

It makes me think of Kermit the Frog who lamented being green, which is not unlike lamenting being diagnosed with food allergies, celiac disease, ADHD or any other thing. In the last stanza of the song, he sang:

When green is all there is to be
It could make you wonder why
But why wonder why wonder
I am green, and it’ll do fine
It’s beautiful, and I think it’s what I want to be

 

 

 

 

 

 

Does Your Child With Food Allergies Dislike Being ‘Different’?

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My son, Morgan, is now 17 years old and has a long time to process feeling ‘different’ from his peers. He frequently hears from other children with food allergies who ask him questions like “Do You Get Tired of Being Different?” Morgan got the opportunity to answer this question in an email that he received earlier this week. I so enjoyed his response that I wanted to share it with all of you.

I can’t personally say I’ve ever been tired of being different; I actually rejoice in it! It makes me, ME. In the same way, having food allergies to peanuts, eggs, or animals makes you, YOU. I really enjoy being different. Why? Well, I went to a Boy Scout camp when I was younger called Camp Alexander. My mom and I really didn’t feel comfortable having the chef cook my food, so we pre-cooked and brought up all of my food for the week long camp – it was a lot of work, I know! But, it was completely and absolutely worth it.

While other Scouts were having bouncy macaroni or dried out cereal, I got to have steaming hot pancakes and sausage that I knew was both tasty and safe! If I wasn’t different, I’d never be able to have that awesome food; instead, I’d be stuck with the regular ol’ cereal. I really don’t like to be stuck with the generic stuff…it’s boring!

However, I know there’s a lot more to being different than just tastier camp food. Sometimes in school you may have to eat something different than all the other kids, and it really doesn’t feel good, right? I know the feeling. You just want to be like all the other kids instead of being different, right? Or, as you said, you have to have your mom organize all the food parties to make sure you’re safe. I’m sure you’ve been playfully teased about your food allergies – like kids complain about the fact that you just have to have food allergies. 

I say move on. Ignore them. I don’t know if you look up to someone or you want to be like someone, maybe a superhero. Iron Man maybe? I’m not sure. But if you do, just know they’re different too. They are someone SO different than everyone else and that is what makes them so special and awesome! 

I like being the “allergy child” or the “allergy kid.” It tells me they’re jealous. They don’t get special treatment (like kings. I mean, come on, we’re definitely treated like kings.) from their moms or dads or get special food simply because they’re different. They’re stuck with that plain ol’ bland cereal instead of awesome food that you like! I really do think they’re jealous. So, you know what I do? I have a lot of fun with my awesome food and ignore them.

 

It makes me a proud Mom to read my son’s response and to know that he means every word of it. I’m too am glad my son is different. We Moms didn’t ask to be on this path of advocating for our children with food allergies, but I for one am glad that I’m on this path with many other fabulous, intelligent Mothers who just want their children to be safe and happy!

 

Kicked Out of College Because of Food Allergies?

Many of you probably saw the blog post by a young Washington state woman titled, “How I was Kicked Out of College Because of My Allergy.” The blog post was taken down, but a local news station interviewed this young woman here. I was horrified and confused how this situation had occurred, especially after the young lady contacted the Disability Services Office of her school.

Since my son, Morgan, is now 17 years old and a junior in high school, we have begun the college search in earnest. It is frightening at times how little a college really knows about food allergies. However, colleges and universities need to get ready. There are approximately 15 million Americans with food allergies; and one out of 12 are under age 18. That’s about two in every classroom. Guess where they are going to end up? In college!

I wrote a blog post last year about Food Allergy, College & 504 Plans after attending a talk by a Senior Attorney with the Office of Civil Rights (OCR) in Denver. The OCR Attorney suggests that all students with food allergies should start with the school’s Disabilities Services Office (DSO) rather than go directly to the Dining & Housing Office and ask for assistance. The DSO is more likely to know what is legally required with accommodations to access the curriculum. The problem we found is that if you go to DSO first, prior to being admitted to a university/college, you might find your child not admitted. While this is not supposed to occur, it’s easy to see how it could.

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When I called a ‘certain’ Colorado university last year inquiring about meeting with the DSO when our family was visiting the school, I was told that they wouldn’t meet with us unless their 6 pages of paperwork had been completed AND that an accommodation had been determined to be warranted. I then asked how many students with food allergies the DSO had dealt with. The woman I spoke to had never heard of one student! She did say she was on the job for only a month, but that really didn’t help me feel any better. If this wasn’t part of her training, my son would be in for a long road toward educating the DSO about food allergies and what accommodations could be expected. Additionally, we didn’t want to put a big red “A” (for allergies!) on his application to the engineering program which is a highly competitive program. It would certainly be easy for them to deny my son’s application under the auspices of anything but accommodating for food allergies. (I later learned that the information we had gotten about not meeting with us until paperwork was completed was erroneous. Lesson learned: ALWAYS ASK TO SPEAK WITH THE HIGHEST LEVEL MANAGER IN THE DSO OFFICE!!)

I’ve spoken with the OCR Senior Attorney several times through the last year about numerous situations in schools where food allergies are concerned. One thing to remember is that public K-12 schools are held to the standard of FAPE – Free Appropriate Public Education, while public colleges are held to the standard of “reasonable accommodations.” The attorney prefers to not get hung up on the term ‘reasonable’ and instead to focus on “effective” accommodations for the student. The question becomes – What’s reasonable to accomplish an equal opportunity for the student? The accommodation has to be effective.

The idea is that the DSO of a school and a student should have a continued dialogue to determine what accommodations are necessary. In this interactive process, the school goes back to the student to see what’s working and what isn’t. The student reports back to the DSO with similar information. There aren’t magic solutions or one-size-fits-all. It may take some creativity, and it also varies with each student and each school. While it may be reasonable for a professor to learn how to administer an EpiPen – in a class of 300 students, is it effective? Additionally, this process necessitates that a student have complete understanding about the exact nature of their food allergy. Do they have contact issues? Have they ever had an inhalant reaction? What accommodations will be necessary for the student to have equal access to the curriculum?

There are two affirmative defenses for a college to deny an accommodation request by a student: 1) the accommodation would require a fundamental alteration of an academic program and 2) the accommodation would put an undue financial or administrative burden on the school.

The OCR Attorney told me that food allergies are a new experience for colleges, and neither the OCR nor colleges have come up with solutions. There really is very little that the OCR can do, other than provide guidance at this point since every student and every college is different. I was told that the OCR comes out with “Dear Colleague” letters to colleges on various topics, and such a letter about food allergies is somewhere in the queue. The release date of this has not yet been determined.

 

 

 

 

AllergicChild.com & Food Allergy Mama, Kelly Rudnicki

Kelly Rudnicki

Kelly Rudnicki is the author of the The Food Allergy Mama’s Easy, Fast Family Meals, The Food Allergy Mama’s Baking Book,  and Vegan Baking Classics. She’s also the creator of the award-winning blog Food Allergy Mama. Her blog has twice been named Babble’s Top Food Blog and ranked #6 in Healthiest Eating. She has appeared on The Martha Stewart Show, Windy City Live, WGN News, ABC News as well as in numerous publications including The Wall Street Journal, USA Today, Chicago Tribune, Chicago Sun Times, Parents, Parenting, Shape, Family Fun, Woman’s Day, and others.

As the mother of five young children, one of whom with severe food allergies, Kelly also spends much of her free time advocating for food allergy awareness and improving school nutrition. She volunteers and speaks on behalf of food allergy organizations such as FARE, and helped write the food allergy guidelines for the Chefs Move to Schools Chicago, an initiative launched by First Lady Michelle Obama’s Go for the Gold campaign to promote higher standards for food, fitness and nutrition education. Kelly also serves as a Parent Ambassador for Healthy Child, Healthy World.

She lives in Southern California with her husband and five children.

Kelly, can you please tell us what food allergies you manage in your children and how you found out about them? My 10-year-old son John was diagnosed at age one with severe food allergies to dairy, eggs, peanuts, tree nuts, peas and legumes. The only allergy he outgrew was egg at age three after a successful food challenge confirmation. We found out about John’s allergy like many other parents of food allergic children, a scary reaction. John was nearly a year old and ate one of his first finger foods, a Gerber Veggie cheese wheel which actually contains very little veggies but is coated in cheese powder. He immediately broke out into hives on his face, started coughing and then vomiting. It was a horrifying experience.

Kelly Rudnicki cookbook

What was your inspiration in writing your newest cookbook, “The Food Allergy Mama’s Easy Fast Family Meals“? After the success of my first book The Food Allergy Mama’s Baking Book, many of my blog readers routinely wrote me asking for my favorite family meals that are fast and allergy-friendly. As a busy mom of five, they wanted to know how I get meals on the table day in and out. I realized that there was a real need to have a practical family meal cookbook that is no nonsense, easy to use and produces delicious recipes every time. The bonus of this book is that many non food allergy families love the book just as much!

What meal is your children’s favorite? My family loves pizza night!

Are there any budding cooks in your family? As a mother of four boys I feel it is equally as important to teach them how to cook as much as my daughter. It’s an important life skill that can easily be taught by mastering a few simple cooking techniques and recipes. Cooking is the epitome of inner creativity, and something that should be fun, approachable and not scary. When people say they don’t know how to cook it is usually because they made a recipe that failed them, not the other way around. It’s wonderful to teach our children to feed our bodies good food made from the heart. And in turn they will teach their own children the importance of family mealtime and cooking. The ripple effect is amazing.

With 5 kids, do you make safe meals that everyone can eat? Or do you ‘short order cook’ a safe meal and then a meal for everyone else? If I was a short order cook, I would lose my mind! It’s hard enough as it is to cook one meal on a busy weeknight! I choose to make recipes that aren’t fussy, complicated or require a ton of ingredients. They are crowd pleasers. However, one child absolutely dislikes the main dish I’ve made for dinner, oh well. They eat the sides and move on. Parents shouldn’t feel obligated to make everything perfect for their children, it’s really OK to serve one family meal and be done with it. If anything, it teaches children to “roll with it”.

Since Mother’s Day is this month, can you share with us any special celebrations that your family has for this occasion? I usually take the day to go for a run and reflect on being a mother and what it means to me. The day I became a mother I was forever changed. Having children forced me to get out of my comfort zone and challenge me to be the best person I could be. I wanted them to watch and learn from not only my successes but most importantly my mistakes. There is no greater reward in my life than my children. I also take the day to remember my own mother, who passed away 16 years ago. My heart broke the day she died, and I don’t think you ever fully recover from the death of your mother. But you do learn, grown and become a mirror of what she was to you.

What can you share with us about sending in safe school lunches – anything wonderful and new for kids tired of the same old thing in their lunch bag? I recently discovered the greatest thing about making safe lunches your child will actually eat and enjoy…have them either help or make their own! I admit I stumbled upon this concept out of part desperation, part selfishness. One day I was exhausted, running in a million directions and literally too busy to spend the extra few minutes to make lunches for my four school aged children. My kids were lounging around waiting for me to take them to school and I had an A-ha moment….have THEM make their own lunches. I had rules; make a sandwich or something with protein, a veggie and a fruit. Cracker and snacks were optional. It was a true epiphany! The kids took ownership in their meals, and were proud to make lunches THEY liked. And it was fun for them to be creative in what they packed every day. I do check the end result to make sure there isn’t just frosted flakes packed. But they’ve done a great job and I think they have really learned the value of making your own meals.

Thank you for including me!

Thank You Kelly and Happy Mother’s Day!

 

How Vigilant Is Your Family With Food Allergies?

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Having read about yet another tragic death from food allergies last week – a peanut allergic 11 year old boy in Utah – it reminds me of the discussions we had with other food allergy families about how vigilant they were. Some families didn’t have the benefit of the knowledge about food allergies from an allergist. Some didn’t properly know how to recognize the symptoms of an allergic reaction. Some felt that an overly vigilant lifestyle around food allergies would thwart their child’s ability to enjoy life. Other families were so scared of an allergic reaction that they hovered over their child not allowing them to ever be without parental supervision. We’ve found the more understanding and awareness we have of the potential for an allergic reaction, the more able we are to make an informed decision about  what level of vigilance is needed. With food allergies, once a family figures out how vigilant they need to be, sometimes it’s too late – and that is beyond tragic!

When our son, Morgan, was diagnosed at 18 months old with a severe peanut allergy (and an egg allergy too), he had experienced hives upon touching a peanut butter sandwich. After that, we were in that stage of denial, hoping that the skin prick test was an anomaly. I thought maybe he would outgrow the peanut allergy. He was able to eat eggs baked in foods just fine, so maybe we were over reacting to the food allergy diagnosis.

A year or so later, at the local school playground, I was talking with another Mom whose 8 year old son had a peanut and egg allergy. She told me about how they never tell the school about his food allergies because he only reacts if he eats the food. And according to her, he knows to never eat peanuts or eggs. She also said something like, “Besides we end up in the ER a couple of times a year, but it’s no big deal.” I was horrified and scared! Was that in our future? Was that really the level of vigilance that was acceptable?

Something shook me to the core about that conversation, and I decided that our family wasn’t going to live that way. There had to be a way to stay away from Morgan’s food allergens and to keep him safe. We needed some agreements to keep him safe in all situations. If my husband and I agreed about these when he was a little boy, Morgan could then continue living by these rules when he took on keeping himself safe.

Here were our rules about food:

Eat foods that have an ingredient label

With the labeling laws in existence now, even this can be problematic if a teacher is expected to read an ingredient label and understand that “May contain…” is a voluntary statement on a label. That’s why we needed more rules than just this one! We read the label of every product along with Morgan from his earliest years. I believe Morgan wanted to learn how to read at a very early age to be able to read food labels.

Read every ingredient label every time you purchase a product

Product ingredients change even if the product packaging stays the same. We made this mistake once with a Klondike ice cream bar. We had purchased this product for at least a year and while the packaging stayed the same, the product contained a “may contain peanuts” warning that I didn’t read. He had a horrific stomach ache after eating, and we were able to trace it back to the ice cream bar. We were graced with a warning on this!

Any baked foods that don’t have an ingredient label aren’t allowed

Think about bake sales at school – a disaster waiting to happen!! Another little girl in Morgan’s kindergarten class had a peanut allergy. She had never had a reaction, but since her older brother had a peanut allergy the parents had her tested too. They had an EpiPen for her at school, but they didn’t give her any rules about her peanut allergies other than “don’t eat peanuts.” Therefore, she would ask another child at a bake sale, “Does this have peanuts in it?” I cringed when I heard this. Thankfully, she outgrew her peanut allergy and nothing bad happened along the way. This situation could have easily turned out otherwise.

Eat only foods that Mom & Dad give you or approve

When Morgan would go to a birthday party, I would either prepare a safe snack for him OR he would decide to not eat OR on the rare occasion that the food was safe, I would have read the label and approve it for him. Usually this was with ice cream. Morgan has brought his lunch to school every day. While the school is required to provide a safe meal for him, we were able to provide a safe lunch for him and did so. It was one less worry for us.

– Carry a Chef Card for Restaurant eating

Eating at a restaurant with food allergies is a big deal. Carrying a Chef Card really helps to let the wait staff and the Chef know EXACTLY what your child is allergic to. Better yet, speak with the chef about cross contamination and how to keep your child safe. Have your child practice giving the information to the wait staff when they get older so that they will be able to do so alone when they are a teenager.

Carry Your EpiPen AT ALL TIMES

There will be mistakes with food allergies. Having two EpiPens with you at all times will ensure that when there is a mistake, you have this life saving medicine within arm’s reach. Additionally, keeping an EpiPen in the car will ruin the medication (too hot) or the injector device (too cold).

Don’t make food allergies the center of your child’s life

Morgan has been able to do so many activities because we look at the opportunity for him to enjoy and experience life first, and then we figure out how to manage his food allergies. He is an intelligent, loving, wonderful son who happens to have food allergies.

AT 17 years old, Morgan now is responsible for caring for himself when it comes to food allergies. He’s very cautious and makes good decisions. And he ALWAYS carries his EpiPens. Yep, you’re reading a little Mother Pride on that one!!

Have You Become a Food Allergy Detective?

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When my son, Morgan, was little we were constantly trying to figure out what caused his red, weeping eyes. Or his runny nose. Or his bad eczema. Or his hives. It was a daily battle in becoming what I now call a “Food Allergy Detective.”

Truly, it was frightening to not know why he was reacting when we went to the library, for example. We’d bring home several books. I’d look over at Morgan and he would be a mucousy mess. We never quite figured out that reaction for sure. It was probably a combination of the fact that the library had a “Paws to Read” program where they brought a dog into the library on a weekly basis to listen as kids read. Morgan had bad dog allergies, but at the time I didn’t understand that the dog hairs left behind could be enough to cause a reaction for him. It could have been the various pollens, dust, smoke, peanut dust and dander on the books themselves. Or it could have been something that we never thought about.

All one summer, Morgan had horrific eczema. We thought it must have been the sunscreen we were using. I continued to purchase new and different products in an attempt to find the mysterious cause. It took years to figure out that it was the ‘kid foods’ at the pool where we frequented. Kid foods have lots of food dyes in them. Turns out that Morgan got eczema from all food dyes. We found this out when we eliminated food dyes from his diet, at the suggestion of our allergist. So the Popsicles he was eating daily at the pool helped to exacerbate his eczema. What a relief it was to come to that realization!

After Morgan had an anaphylactic episode to fish on a camping trip, we thought we could still grill fish at home. We’d grill it outside our house on the deck, use a special grilling ‘cage’ for the fish, clean up scrupulously afterward – and all would be fine. This worked for a few months. Then, one morning we weren’t so lucky. We had eaten fish the night before, and Morgan had been fine. But the next morning, his eyes swelled shut and then began bulging. We dosed him with steroid eye drops, Benadryl and raced off to the allergist. Our doctor determined that Morgan had touched the fish that probably wasn’t cleaned entirely off the countertops or some surface inside our house. He had likely then wiped his eyes. That was a frightening experience! We determined then that it’s not worth eating fish even with preparing it outside on the grill. We just aren’t able to be careful enough to ensure his safety.

All this detective work has been necessary to try to have some control over Morgan’s environment. Ultimately it’s helped him to gauge whether a situation is safe for him. We talked through many situations with him as he was growing up to determine what might happen based upon past experience. He is one of the most sensitive food allergic children that I know. We learned though how to keep him safe. We’ve found that it’s REALLY necessary to have a safe home. It allows his immune system to be on ‘pause’ while he’s sleeping.

As for Mom here – I’m sure the local police force would appreciate my detective abilities. I’ve honed them well through the years!

Growing Up With Food Allergies

In December of 2005, when my now 17 year old son, Morgan, was just 9 years old, I asked him if he’d be willing to start writing a column for my AllergicChild.com Newsletter (which has since become our Blog). We decided to call it Morgan’s Corner.  This was before he’d had anaphylaxis to fish on that fateful camping trip. He was still in elementary school, and wasn’t yet allowed to self-carry his EpiPen since the law in Colorado was yet to be passed.

However he was certainly knowledgeable about his food allergies! He’d experienced teasing/bullying on the playground, been left out of activities at school (even with a 504 Plan in place!) and gotten to self-advocate with a teacher. The life of a child with food allergies is filled with lessons. If you ask your child the questions below, do you know what answers you would get?

A trip down memory lane found Morgan’s original column:

 

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How old are you Morgan?
I’m 9 years old and in the 4th grade.

What are you allergic to?
Peanuts, Tree Nuts, Shellfish, and Sesame. I’m also allergic to Dogs and Cats, although it’s mostly anything that’s alive with fur on it. Although those are but a few what I am really allergic to, those are my main.

Do you ever remember not having allergies?
No, I do not remember not having food allergies. I was really young when we found out, so I don’t remember.

What’s the worst part of your allergies? In other words, what do you wish you could change?
I don’t know really what the worst part is. It’s either not going over to a friend’s house or I can’t eat something. I also wish that I did not have dog allergies just because a lot of my friends have dogs, so they have to come over to my house instead of me going over to theirs.

Have you ever been teased because of your allergies?
Well, twice actually. Once, a friend of mine went running around the playground, of course chasing me, holding a peanut butter cracker and yelling “Eat it Morgan! Eat it!” Another time is when another one of my friends actually went around chasing me pretending to be a peanut butter sandwich. All these times, I went and told the teacher and they did get in to trouble. We’re friends now, and I don’t think about it much anymore.

Have you ever been left out of activities because of your allergies? If so, what? How did that feel?
Food Fights, Food Fights, and more Food Fights. Seriously, I have to either not participate, or check the labels on all foods at a party at school. That usually takes a long time though. It sometimes felt great that I’m safe, but I also want to participate. I have also been left out when my 1st grade classroom went next door and I couldn’t go in. The classroom wasn’t peanut free. I told my teacher how it felt to be left out. She cried, and it didn’t happen again.

Food Allergies, Mast Cells & Hitting Your Threshold

Food Allergies, Eosinophilic Esophagitis (EoE), Autism, Asthma, Celiac Disease and Eczema all have mast cell issues in common. There is a huge need for research into food allergy and its relationship with these other diseases. You have probably heard of most of these diagnoses except for maybe a new diagnosis called Mast Cell Disorder.

My daughter’s and my diagnosis with a Mast Cell Disorder has lead me to do some research into mast cell disorders and how they relate to these other diseases, especially since my daughter also has tree allergies, celiac disease and ADHD; I have EoE, environmental and other severe food allergies; and my son has a diagnosis of multiple life threatening food allergies, eczema, environmental allergies and asthma. I believe there’s a huge opportunity to find a cure for these diseases by combining research efforts.

I’ve heard from so many families who have one child with celiac disease and one with food allergies; or some other combination of the issues above that there seems to be a link between these conditions. And as far as I know, no research has been done to look at a ‘main cause’ of all these diagnoses. Yet, all are on the rise in our children.

Additionally, with the Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) research that’s currently being done in an attempt to find a cure for food allergies, it concerns me greatly that children participating in a research study may not be aware that they might be trading one disease for another. They may be getting rid of their food allergies, and end up being diagnosed with EoE or a mast cell disorder somewhere in their future.

In fact, some children have to cease participation in a research study because of a diagnosis with EoE, that later resolved after ending peanut desensitization. Research on milk OIT was reported at the recent AAAAI meeting where patients were found to become more reactive to milk after three to five years of desensitization. I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder.

So much isn’t known about how the immune system functions, and approximately 75% of our immune system is in our gut. It’s quite a gamble in an attempt to find a cure for food allergies!

The Allergic Response

I’m not a medical doctor nor an allergist, but this is what I understand occurs in our body when the body senses an invader, or foreign substance, and the immune system is triggered. An allergy is an overcompensation of the body’s immune system when confronted with the protein of a food, a drug (such as penicillin), a bee sting or an airborne pollen that the body views as an invader. The body releases an overload of histamines in response to the attacker substance, which can create symptoms such as a runny nose all the way to the extreme of anaphylaxis.

The immune system normally protects the body from harmful items such as bacteria or viruses. In the case of allergies, the immune system has a hypersensitivity or an allergic reaction. During an exposure to an allergen, B cells are alerted and turned into plasma cells which produce IgE (immunoglobulin E) antibodies to fight the “invader.” These antibodies travel through the body until they come into contact with the immune cells called mast cells.

mast cell

Mast cells are present in the skin, respiratory system and the gut and are important to keep us healthy by fighting off  viruses, etc. The antibodies attach themselves to the mast cells via a receptor on the surface and remain attached. That way the next time the immune system meets up with the same invader, the system is primed to react again.

Eosinophils are white blood cells that are one of the immune system components responsible for combating parasites and certain infections. IgE, mast cells, basophils, and eosinophils are essential components of allergic inflammation. Mast cells are tissue resident cells and uniquely required for immediate hypersensitivity. Basophils are largely circulating cells, but home to areas of allergic inflammation during the late phase response. Eosinophils are resident to the GI tract, but also home to allergic inflammatory sites.

Patients with EoE have a high level of white blood cells, or eosinophils, in their esophagus. Research has shown the relationship between high eosinophils and high mast cells.  Dr. T. C. Theoharides of Tufts University has found that children with autism have high mast cells, which he postulates causes the severe form of “brain fog” that these patients experience. The brain-blood barrier is compromised and affected by high mast cells. Research has found that patients with untreated Celiac disease have depressed levels of mast cells, as do patients with eczema in different recent research.

Patients with mast cell disorders may or may not have true IgE food allergies; however most of these patients are triggered by high histamine foods. Many are triggered by pollen allergies, and/or certain drugs that increase mast cells. Some, like myself, are so sensitive that food dyes in medications can cause a reaction. It’s interesting that all of these conditions involve mast cells not being “normal.”

A Little History

Since my diagnosis of a mast cell disorder in 2010, I realized how long I have suffered from other allergic issues. I had severe environmental and pollen allergies as a child; got diagnosed with several food allergies in 1993, three years after my daughter was born; and continued to have more and more stomach aches after my son was born in 1996. I got stung by a wasp in 2006, which put my body ‘over the threshold.’

It took 4 years before I got a diagnosis of a Mast Cell Disorder from Dr. Philip Miner, a gastroenterologist with the Oklahoma Foundation for Digestive Research in Oklahoma City, OK. I later found out that Dr. Miner has been researching mast cell disorders since 1988, and only recently has his work been incorporated into medical literature. More and more patients are being diagnosed with mast cell disorders since Dr. Miner has developed the various criteria to review. There are only a few research centers in the USA that have knowledge about mast cell disorders. You can find a listing of these here. Dr. Miner has trained several of these physicians. He is the ultimate researcher, and tells his patients to ‘never give up hope’ that he can help you feel better.

Mast Cell Disorders

You may have heard of systemic mastocytosis or urticaria pigmentosa (also called cutaneous mastocytosis); however Dr. Miner found that there is a spectrum of mast cell disorders that don’t necessarily biopsy in the bone marrow or the skin. One can have a pooling of mast cells in any organ, and my daughter and I have such a pooling in our gut. Patients diagnosed with systemic mastocytosis or urticaria pigmentosa also frequently have stomach aches, since the high mast cell count is not only in their bone marrow or skin, but also frequently found in their stomach.

I’ve learned from Dr. Miner that those of us with mast cell issues have a threshold over which we begin to react. This is true with most of the allergic issues. A high pollen day along with a virus can send your child’s immune system over the edge to where they break out in hives for no apparent reason. Yet what’s really going on is an onslaught of mast cell activity that has made it appear that your child can no longer tolerate certain foods, for example. Or it appears they are having inhalant reactions; or suffering from stomach aches during the Spring and Fall when pollen season is high. Too many mast cells in the body react, and the child goes over a threshold, and begins to react to virtually everything.

The high mast cells in our gut affect the mucosal barrier in our stomach and intestines leading us to ‘leaky gut’ syndrome. This allows even more food proteins to pass into our blood stream causing more food allergies and more reactive issues. My daughter’s leaky gut was exacerbated/created by her celiac disease which she had for 10 years prior to a diagnosis.

The immune system threshold may be reached by a virus, a fragrance, pollen in the air, a drug or a high histamine food. If a patient with a mast cell disorder is skin prick tested or blood tested for an allergy, there may not be a true IgE allergy to the “invader.” The mast cells are just twitchy and ready to react to anything and everything. These reactions can be in the form of hives, stomach aches or life threatening anaphylaxis.

Patients with mast cell issues may be diagnosed with celiac disease yet find their stomach aches continue even on a gluten-free diet. Or the patient may be diagnosed with Irritable Bowel Syndrome, without any biopsy completed to check for high mast cells in the stomach or intestines. Information about mast cell issues is not in abundance on the Internet. Some information about Mast Cell Disease can be found at www.tmsforacure.org and emergency care can be found here.

Published research can be found here. Most of this information is about the systemic form of the disease.

Mast Cells, Histamines, Drugs and Foods

If you believe that you and/or your child is having some mast cell issues and going ‘over the threshold’ on a regular basis, what can you do? Dr. Miner has stated that there are 7 deadly sins for mast cell patients to eat: beef, pork, onions, tomatoes, wheat, oranges, and chocolate. These foods are all high in histamine and his research has shown that mast cell patients can clear up a lot of stomach issues by ceasing to eat these foods. If your child is suddenly “over their threshold” and seemingly reacting to everything, try removing these foods from their diet and see if their system calms down.

Additionally, bananas hold histamine in the body. You may not have an allergy to them, but can still experience symptoms, like hives, if you eat them.

My daughter and I are currently on a very limited diet of foods to try to calm down our mast cell activity. We eat completely organic currently and it’s working! We never had to go on a feeding tube (which many mast cell patients have to do to give their gut a rest), for which we are very grateful. It’s really hard to eat very few foods every day diligently. But constant stomach aches and hives are no fun, so there’s a lot of willingness that we both have to feel better.

If you remove preservatives, GMOs, food dyes and packaged foods from your child’s diet – even if you don’t go completely organic – you might find that your child begins to feel better. That has been our experience.

There are certain drugs that also increase mast cell degranulation. They are:

Aspirin
NSAID’s (Ibuprofen, Motrin, Aleve)
Morphine
Iodine
d-tubocurarine (used in anesthesia)
polymixins (in over the counter bacitracin)
decamethonium
alcohol (if it makes symptoms worse)
Taking even one Ibuprofen pill can affect my stomach. I’ve learned a lot of other ways to get pain relief for muscle aches!

Mast Cell Drug Regimen

There is a drug regimen that is necessary to stabilize the mast cell. Zyrtec and Zantac are used for H1 and H2 histamine blockers. Additionally, to stabilize the mast cell, Gastrocrom (Cromolyn Sodium) is often prescribed, but neither my daughter nor I could tolerate this. Instead, we are on Ketotifen in pill form, which we obtain from a compounding pharmacy since it isn’t formally FDA approved in the USA. Patients may also benefit from Budesonide, a corticosteroid, especially if EoE is also diagnosed.

For those of you with children diagnosed with EoE, you probably notice that many of these drugs are also prescribed to manage Eosinophilic Esophagitis.

In order for mast cell patients to get better, their food, drugs and environment all need to be managed. If a patient is constantly ‘bumping up’ to their threshold, the immune system is constantly firing. And likely they are miserable with stomach aches, nausea, hives, nasal congestion, etc. Eating a low histamine diet, taking all prescribed medications, and watching for individual triggers are necessary to begin the long road to feeling better.

Mast cell disorders are a chronic disorder, and one that will not be outgrown. A patient can go into remission, but it’s very difficult to get to that point if you have been suffering for years with a high mast cell count. It can take months and even years for mast cells in the gut to normalize.

Food Allergy Research & Mast Cells

I have read a lot about the research utilizing Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) for a cure to food allergies. These desensitization protocols concern me greatly because of the mast cell involvement with food allergies. I’ve yet to see one research study wherein patients are first put through a biopsy of their esophagus, stomach and intestines to get a baseline of their mast cell count at the onset of the study. In my mind, this would give researchers a better idea of which patients are more likely to go over their threshold if their gut mast cell count is already high. I have queried this idea with a leading food allergy research doctor in the USA. His response was that it’s so difficult to get patients to enter into research trials, that asking for a child to have an endoscopy would likely have more parents decline to participate.

Ingesting small amounts of allergens is certain to increase the mast cell count in the gut, and the result could be mast cell issues in years to come. We just don’t have enough research to know what is going to happen to these study participants 10 or 20 years down the road. I say this because of the history of what has happened to me. A child with multiple food allergies may not be able to eat 4 or 5 foods. An adult with a mast cell disorder may only be able to eat 4 or 5 foods!

I receive dozens of emails from families whose children have been diagnosed with EoE, yet most have never heard of a possible mast cell involvement with their child’s EoE. Some GI docs are doing biopsies for mast cells in addition to eosinophils, yet they aren’t using the Alcian Blue 3 stain, which is the only staining that effectively picks up the true level of mast cells according to Dr. Miner. So the GI doc isn’t getting the correct information to properly diagnose the problem.

I’ve also had many discussions with parents who believe that their children have an inhalant allergy to a food. They tell me these stories that are heart wrenching about their children suddenly reacting to peanuts on someone’s breath or something similar. The reactions are frequently quite severe. Inevitably, years down the road I hear from the parent that the child has been diagnosed with EoE. This makes sense in light of the mast cell involvement. If a child has a diagnosed food allergy to peanuts, for example, that may be only part of the story. The child may also have a high mast cell count that manifests into a diagnosis of EoE. Wouldn’t it be nice if the allergist who hears a story of a child having inhalant food reactions could/would send the child to a GI doc for a mast cell disorder check up?

I wish there was more shared research on these various disorders so that children wouldn’t have to suffer needlessly without a proper diagnosis. There is still so much to learn, but I hope that my diagnosis with a mast cell disorder might help others who are suffering recognize some similar symptoms and get help!

I wish that we knew more about the workings of the immune system so that not only could we find a cure for food allergies, but also a cure for EoE, mast cell disorders, autism – the list goes on and on.

I wish that the research of all these conditions were more easily shared with all the various doctors (allergists, pediatricians, GI docs) so that patients didn’t suffer for years before getting a diagnosis.

In the meantime, our family is going to be cautious about what we eat to ensure that we do our part to cease adding diagnoses to our long list!

Read my daughter’s story of mast cell issues here.

 

 

Food Allergies in School: 3 Allergists Answer questions

Our School District’s Food Allergy Task Force wanted to find out what several allergists thought about managing food allergies at school. I sent these three allergists several questions:

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Daniel F. Soteres, MD MPH is a Board-Certified allergy/immunology physician with offices in Colorado Springs and Pueblo. He has been in private practice at Asthma and Allergy Associates and Research Center since 2005.

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Todd Mahr, MD, is a Board Certified director of pediatric allergy/immunology at Gundersen LutheranMedical Center in La Crosse, Wisconsin.

Bonnie Baswell

Bonnie B. Baswell, MD, FACAAI is a Board Certified Allergy & Immunology physician in Colorado Springs. She has been in Colorado Springs since 1984 and in practice at Colorado Springs Allergy & Asthma Clinic.

Each allergist was asked the same questions, and their responses are copied exactly as they responded. The hope was that we would be able to better manage some of the nuances of food allergies in the school classroom.

When you  are asked to write a letter outlining school accommodations for a severely food allergic child, do you always suggest an allergen-free classroom(s) for the child? Or does this depend upon age or previous allergic reactions of the child?

Dr Soteres: No, in general, I do not suggest and allergen-free classroom.  However, I do make exceptions depending on the history and testing information.  Multiple factors contribute to the decision.  There are objective criteria like skin test and blood test results and subjective issues like the history of reactions and their severity, student and parent anxiety, as well as the school’s (administration and teacher’s)  responses to these issues.

Dr Mahr: Personally for me, it depends on the age of the child. As they get into 4th grade or older, I try and include the child in the recommendation as they often do not like to be singled out. However, safety is always first. We try and recommend no food in the classroom.

Dr Baswell: I would recommend an allergen free classroom for peanuts and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut, this would have to be addressed on an individual basis.

As an allergist, if you suggest an allergen-free zone in a classroom, are you also concerned about foods containing an ingredient label stating “may contain…” being in the classroom? Or are you only concerned about products that actually include the child’s allergen? 

Dr Soteres: This is variable.  A few kids are so sensitized to their allergens that the “may contain.” label may be a threat.  For most, this is not a threat.

Dr Mahr:   We try and concentrate mostly on the labeled allergens, and this is difficult as with the labeling act, so many foods have had the “processed in..” it is hard for schools to operate in this gray zone. So with that, we usually have them acknowledge the labels.

Dr Baswell: I would recommend an allergen free classroom for peanut and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut this would have to be addressed on an individual basis.

In a school setting, would you be concerned about a peanut allergic child touching a food that had a label stating “may contain peanuts”? 

Dr Soteres: In general ,“no”.  Of course there are exceptions.

Dr Mahr: Age dependent again, but indeed the younger the child, the greater the risk of that contact getting into a mucous membrane (mouth or eye).

Dr Baswell: Yes, I would be concerned about contact reactions even if it was the ” may contain” labeling.

In the school environment, is there an age or a level of ‘milder allergy’ where you feel comfortable with a patient of yours being in a classroom with their allergen being eaten or being used in an art project or science experiment? 

Dr Soteres: As kids get older I expect them to be less messy with their foods and kids with food allergies become more savvy and better self-advocates. The art projects and science experiments make me a little more concerned.  In the past year there have been some nice studies that show some younger kids with allergy to say milk or egg seem to have a better chance of outgrowing their allergens if they tolerate the allergen in baked products AND continue to consume those products.

Dr Mahr: Art projects generally not until middle school, but even then I prefer no food allergen in an art project, even at that age, but again we try and not have food in the classroom.

Dr Baswell: I do have patients with milder food allergies that are manifested only by eczema on ingestion that I do not feel are at risk in a regular classroom. I would not want them to have contact with the offending food such as peanut butter in a science or art project so I would exempt them from this.

If a parent tells you that their child has had inhalant reactions to an allergen, is there any way for you to test for this level of an allergic reaction? For example, does a higher IgE to an allergen signify a higher likelihood of an inhalant reaction? 

Dr Soteres: There are not good studies or any test to really back up the claim that a child has had an inhalant reaction or that they are at risk for one.  We try to trust the parents’ judgment on this.  When the lab tests are high, then it supports the history as well.

Dr Mahr: Unfortunately IgE level does not correlate with sensitivity.

Dr Baswell: In general, this is rare and the usual cases are of reactions to aerosolized fish or shellfish at home or in a restaurant. I would expect their specific IgE to be significantly high. I   don’t do bronchial challenges for foods but there is some research on this. I would rely on their history of inhalant reactions and if this exists, their individualized health care plans would need to address this to prevent accidental exposures and to provide immediate treatment with EpiPens .

What have you suggested for school accommodations for your patients with reported inhalant reactions?   

Dr Soteres: We have a few situations where we have suggested an allergen free classroom.  My concern is that this can lead to a false sense of security. The main accommodation is to avoid contact and be prepared for a reaction when/if it occurs.

Dr Mahr: I think this is an area where a more personal directive is needed, rather than a global policy, as they are all so unique.

Dr Baswell: Avoidance!

Thank you to these three doctors who took their time for our Task Force. After extensive discussion about the responses, the Task Force decided that every child with food allergies needs to be looked at individually for the accommodations necessary for the child to enjoy equal access to the curriculum. It was certainly helpful to be aided by the medical standpoint however!

Food Allergies & Dating with Sloane Miller

Author Sloane Miller

Sloane Miller, food allergy advocate, author and life coach, is founder and President of Allergic Girl Resources, Inc., a consultancy devoted to food allergy awareness.  She consults with private clients, the healthcare, food and hospitality industries, government and not-for-profit advocacy organizations. Ms. Miller earned her Master of Social Work at the New York University’s Silver School of Social Work and her Master of Fine Arts in Writing and Literature at Bennington College. In 2006 she started Please Don’t Pass the Nuts, an award-winning blog for and about people affected by food allergies. In 2011, John Wiley & Sons published Ms. Miller’s first book, Allergic Girl: Adventures in Living Well With Food Allergies, the definitive how-to guide. Ms. Miller combines a lifetime of personal experience and passion with professional expertise to connect with people about how to live safely, effectively, and joyously with food allergies. You can find her at www.allergicgirl.com.

Sloane, can you please tell us what food allergies you manage and when you were diagnosed?

I have always been an allergic girl.  I have had food allergies since birth and I developed environmental allergies, eczema and asthma in early childhood.  I am also a social worker and writer.  In 2006, I became “Allergic Girl” and started the award-winning blog, Please Don’t Pass the Nuts, as a way to talk about food allergies.  I wanted to share my experience and connect with other people with food allergies; talk about what I was going through dining out, traveling, dating and working and the things I learned.

My work as a food allergy advocate—“Allergic Girl”—combines my commitment to helping people with my personal experience as someone with food allergies and my professional expertise as a social worker and writer.

What is your most recent experience with food allergen-related anaphylaxis? What were the circumstances and what did you learn from the experience?

My most recent anaphylactic experience was in 2009 after kissing a man I had been dating. Earlier that evening, we had gone over my allergens, my anaphylaxis action plan and where I kept my emergency medications. This was prescient. Later that evening, while kissing, I broke out in intense hives and started wheezing. He had eaten cashews earlier that day and, even though he had no proteins in his saliva, he had cashew nut dust in his beard. My reaction to that nut dust was swift and severe, but because we had discussed what we needed to do in an emergency, I were able to take care of the symptoms with his support and without further escalation.

The experience underscored that how vital is it to have and to know your anaphylaxis action plan, to have your emergency medications on hand in all circumstances and to communicate your needs clearly and concisely to others around you so they can support you.

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I love your book, “Allergic Girl: Adventures in Living Well with Food Allergies” especially the chapters about dating. What can you suggest to teenage girls and boys about how do you say “No” at that age to a good night kiss from a date who ate your allergen?!

Thank you! No one ever talks about food allergies and dating so I devoted a whole chapter just on that topic.

Truly, the best defense, as they say, is a good offense. Don’t wait and watch while someone you want to kiss eats your allergen then goes in for a big smooch! As difficult as it may be, speak up about what your needs are in a clear and factual way to your potential kissing partner. The last thing they’d want to do is hurt you!

Extra credit homework: It really helps to practice having this conversation. So, enlist a safe friend or parent to practice how to talk to your date about food allergies, your anaphylaxis plan, where your medications are and what you need to smooch safely.

As kids grow, they become involved with activities where the parents are no longer involved. How can parents prepare their teens and preteens for handling food allergies while away from home? Are there some ‘absolutes’ in terms of “You Must Do This…”?

Teaching a child learn self-advocacy skills can never start too early; alternatively it’s also never too late! Ideally, once your child has been diagnosed with food allergies, engage them with age-appropriate advocacy skill sets. For example, n=knowing exactly what their allergens are, how to speak up about their food allergy needs to an appropriate adult, identifying allergens, how to read labels and that you have to do it every time and most essential: knowing their personal anaphylaxis action plan and having access to emergency medications at all times.

As every child is different, go where your child is; for example, a shy child will advocate differently than a bold one.

How can parents prepare a child with food allergies with the steps to take in an ‘emergency’?

Once your child has been diagnosed with food allergies and you receive an anaphylaxis action plan from your board certified allergist, think of it as the beginning of an ongoing process and conversation. Like a fire drill, run through the steps of that anaphylaxis action plan and equally important, engage your child about what an “emergency” means. Explore with your child the possible scenarios, solutions and outcomes as well as their feelings, fears and concerns. With younger children, this conversation can happen with play or through art; with middle school and high school children let them lead you to the emotional place they need to go.

And keep practicing. At different life stages, fears, concerns, worries as well as strengths and accomplishments change. Remember, an anaphylaxis action plan is a live document and what constitutes an emergency is living conversation.

What are the key tools/rules you use to keep yourself safe?

I find for myself, my readers and my coaching clients that the best tool to create a safe environment where ever you are is to take your food allergies seriously and manage risk. What does this mean? See a board-certified allergist. Ask a lot of questions of your allergist so you will fully understand your diagnosis. Fill your prescriptions and always carry them with you; also know your anaphylaxis action plan. Communicate your food allergy needs to those a round you so they can help and support you. And, be patient with yourself. There will be mistakes.  Being prepared will help.

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Yep, that’s Morgan and Nicole with Sloane, whom we met in Chicago at last year’s FAAN conference in March 2012

Sloane and Morgan hit it off right away. It takes a food “allergic girl” to really understand a food “allergic boy”! They shared stories about managing food allergies in restaurants and school and more. It’s so wonderful for our kids to have great mentors like Sloane.

You’re probably also wondering…just how tall are Morgan and Nicole? Or is Sloane just a tiny little thing?! She is a ball of energy…and a tiny little thing next to the two of us!

Food Free Classrooms – Can You Imagine?

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Wouldn’t it be amazing if your child’s school removed all food from the classroom? Imagine what that would be like for those students with food allergies! You wouldn’t have to worry about a safe snack box; you wouldn’t have to worry about snacks at all! No birthday celebrations of cupcakes, no holiday celebrations of buffets of sweets, cookies and candies – no food at all!

There was a time, when my son was in elementary school, that such a thought was a pipe dream. Yet, there were other parents even then – 10 years ago – who thought like I did. Why is there so much food in school these days? When I was in school (back when the dinosaurs roamed, as my kids remind me), we ate at lunch time in the cafeteria. That was the only time food was allowed. Now, children get morning snacks in kindergarten. And they are only at school for 2 1/2 hours! How hungry can a child get in that amount of time? In my son’s high school, students can eat anything, anywhere, anytime. And they do! They eat and eat and eat. And sadly, most of the time, they don’t clean up after themselves, which causes even more issues for students with food allergies to have to deal with the mess that’s left over.

In 2006, as part of federal and state initiatives, our school district formed a wellness committee that looked at how much food is offered in school. We also looked at what kind of food was offered. Many of the teachers who were on the committee were blind to the fact that they gave candy as a reward for good behavior. Additionally, they used M&M’s or Skittles for counting and grouping in math. Food was used in science to “examine the chocolate chip cookie.” In art students would draw a box of Captain Crunch and then eat it. It became apparent to me why we have such an issue with obesity in this country! Food – and mainly unhealthy food – was being offered to my kids every day at school.

Getting food out of the classroom will assist with not only obesity, but also with the many medical conditions that students manage. A child with diabetes has to monitor their carbohydrate intake, and doesn’t need the constant barrage of candy that many teachers use to reward good behavior. Parents of children with ADHD, Crohn’s, and autism also wanted to have food removed from lessons. Additionally, parents made choices of their children being a vegan or vegetarian, and I found parents of these children to be of a similar mind to mine. Get food out of the classroom!

There are schools that have implemented “No food” rules. Here’s a short list of schools/school districts that have their policies listed on their websites.

Chatham, NJ school district

Guilford, CT public schools

 

Madison, CT public schools:   Go to Section 5120.3.4 called “Managing Food Allergies”. Look for #14 in the School Responsibilities.

Pottsgrove School District, Pottstown, PA

 

Howard County, MD public schools: See page 2 of the School’s responsibilities

Great Neck, NY public schools

Robert C. Hill Elementary School, Romeoville, IL

 

I’m sure there are more out there, but these are the school districts that have it in writing on their website.

I’ve been beating this “No Food in the Classroom” drum for 10 years now. This past Halloween, our school district had two elementary school students, at two different schools, go into anaphylaxis during Halloween parties. Thankfully, both students had EpiPens at school which were administered and they survived. Both incidents involved snacks being brought into the classroom by another well-meaning parent for the party. One snack had “may contain peanuts” written very small – and sadly everyone missed that statement on the label. The other snack was homemade cupcakes and included tiny crumbles of Reeses peanut butter cups on top of the frosting. That mother was supposed to bring in pretzels and thought she was doing a good thing to make homemade cupcakes.

After these two frightening incidents, our school district is progressing toward food free party celebrations. The district has been given the grace of a warning. I really hope they heed the warning and remove food from classroom parties, at the very least. I understand that there are those students who medically need to have snacks during the day and that can certainly be managed on an individual basis. My hope is that one day, schools will move back toward when the dinosaurs were roaming, and all students will eat in the cafeteria ONLY!

Stock Epinephrine bills in many state legislatures!

Many state legislatures are currently hearing testimony about “stock epi” bills, which will benefit school children with diagnosed food allergies, and those who haven’t yet been diagnosed. Several states, including Virginia, California, Georgia, Illinois, Kansas, Missouri, Nebraska, and New York, already have stock epinephrine laws in place.

Colorado HB 13-1171, concerning the use of auto-injectors in emergency situations in school settings, has recently been passed by the House Public Health Care & Human Services Committee  by a vote of 11-2. We have a long way to go to get it through the House and then through the Senate before the legislative year ends in May 2013, but it is a good start!

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More than two dozen states have either introduced legislation or are very close to doing so this year regarding stock epinephrine in schools. Some of the legislation allows for voluntary compliance, while others are mandating stock epinephrine in every school in the state.

What is stock epinephrine? It allows a school (generally defined as K-12, public and private) to have an epinephrine device (either EpiPen or the new Auvi-Q) that is non-student-specific. Stock epinephrine can be used in anaphylactic emergencies at schools for students who do not have epinephrine auto-injectors on campus. A student may have a diagnosed food allergy, or may not.

What are the benefits of this legislation? There have been at least two deaths in the last 18 months where a child had a severe allergic reaction at school and did not have epinephrine prescribed for them. If the school had a stock epinephrine device, these children could have received a dose while 911 was being called. The hope is that a school nurse, or a nurse’s designee, would be able to administer the epinephrine after noting the allergic reaction. In other words, lives would be saved!

Most doctors and allergists that I know are in favor of this legislation, as is the National Association of School Nurses.

What are the potential issues with the legislation? For those states where school nurses are handling thousands of students across several campuses, there are designees  assigned under the nurse’s  license to carry out doctor orders. Therefore, you could have an issue of a non-medically trained school secretary attempting to determine whether a child’s stomach ache is from the flu or the beginning of an allergic reaction. While epinephrine shouldn’t cause any harm to most people, giving the shot unnecessarily certainly isn’t what any school district wants to happen because of potential liability.

The other issue is the cost of the epinephrine devices that generally expire after one year. Most schools are woefully underfunded and spending $250 per 2-pack for an epinephrine auto-injector for every school every year adds up quickly. The expense is the biggest issue I’ve been hearing about in my school district that overall supports the legislation.

The last issue that I heard was brought up by a Colorado parent of two children with food allergies. She was concerned that cash-strapped parents may assume that if this legislation passes in our state that the child’s school will always have an extra epinephrine auto-injector on hand. Therefore, parents may not spend the money to send in an extra EpiPen or Auvi-Q to school with their child, only to find out that the school doesn’t have the money either!

I think a voluntary stock epinephrine law is preferable to a mandatory law because of the current fiscal environment. That will also allow individual school districts and schools to determine what is right for them. Check out your state legislature to see where you can help – testify, send emails, and get involved with this legislation!

 

Should your child’s school district have a Food Allergy Task Force?

We have one, and it’s the greatest group of advocates our school district has ever had to increase education and awareness of food allergies, and to keep children with life-threatening food allergies safe at school.

Life Before the Task Force

Before our task force was created, each parent of a child with food allergies had to train the teacher and school administrators about food allergies and what accommodations would be necessary to keep their individual child safe. In a district of over 23,000 students, we had almost 300 students with food allergies in 2007 when the Task Force was created. Today, in 2013, there are over 600 students with food allergies in our school district. The number continues to increase every year.

Each school was trying to develop its own set of best practices, yet there was no systematic way to share information about successes and challenges from one school in the district to another. Each time a new student with food allergies showed up at a school, there was another reinvention of the wheel.

How the Task Force Came into Existence

Some parents of children with food allergies became frustrated and sent letters and e-mails to the superintendent and school board, asking that a standard set of guidelines be developed to assist every school in our district to appropriately manage food allergies. Our school district, Academy District 20 in Colorado Springs, Colorado, formed a Food Allergy Task Force in response to these concerns. The school district’s superintendent supported and encouraged the group’s work.

Who’s Part of the Task Force?

Founding members included three principals (one from each level), five parents, a school nurse, the food services director, the district Section 504 coordinator, the director for legal relations and the chief operating officer. It was important to include all of these stakeholders to ensure that information was gathered to create complete guidelines for a child in the classroom, on the school bus and in the cafeteria – to name just a few. Since the group formed, others have joined, including a local physician specializing in treating children with severe allergies and asthma, three parents and two more school nurses. Members come and go depending upon new topics that come up in our school district and/or state. More and more school nurses attend the meetings over the years, since they continue to be faced with managing the treatment plans of more and more children with food allergies!

What the Task Force Does

Our Task Force submitted recommendations to the superintendent for policy revisions and guidelines for protecting children with severe allergies. Those guidelines were implemented by all schools in the district the following year. (You can review these guidelines here.)

This implementation effort involved collaboration and cooperation between school administrators and school nurses. Nurses train all district staff (including bus drivers, cafeteria staff, teachers, etc) on how to recognize symptoms of anaphylaxis and how to administer an epinephrine autoinjector.

May 2009 Governor Signing 060

The Task Force continues to meet approximately two to three times a year to evaluate how things are going in our schools and to provide support to members. The success of our Task Force in creating guidelines was used as a foundation for The Colorado Schoolchildren’s Asthma and Anaphylaxis Act of 2009. This act requires the Colorado State Board of Education to promulgate rules for the management of food allergies and anaphylaxis among students enrolled in public and charter schools in the state.

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The Task Force hosted a Food Allergy Summit promoting awareness of life-threatening allergies and asthma in both 2010 and again in 2012. The keynote speaker in 2010 was a physician in internal medicine, allergy and immunology, who is also an Anaphylaxis Community Expert (ACE). A panel discussion followed his remarks, providing perspectives from two students, one elementary and one high school, a principal and two teachers, a school nurse, a school attorney, the food services director, and a parent on how to keep severely allergic children safe in school.

More than 120 parents and students attended and the task force is committed to continuing efforts to raise awareness about the need to protect children with severe, life-threatening allergies in our schools.

In 2012, the Food Allergy Summit included information about the psychological impacts of food allergies and helped students with food allergies learn how to self-advocate with a question and answer session for them to practice with difficult situations presented for them to resolve. Students got to meet other kids “just like me” and parents were able to meet with other families facing similar challenges and successes.

Our school district was the first to create a Food Allergy Task Force. Since then, there have been at least two other districts in Colorado that have also created one. The result: more children with life-threatening food allergies are safe at school! Will your district be next?

 

AllergicChild.com & Food Free Valentine’s Day Parties

Valentine’s Day is traditionally a day of chocolates and candies in celebration of the day. Too many of my son, Morgan’s, school parties were laden with treats. I rarely looked forward to helping plan the party.

There are so many ways to celebrate Valentine’s Day without food – or at least with safe foods for everyone! Here’s some ideas to help you plan a great safe party for all kids. Many of these ideas came from readers on our Facebook page here.

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  1. Beading friendship bracelets
  2. Beading keychains
  3. Bingo
  4. Card-making party and exchange
  5. Balloon games (if no latex allergies)
  6. Fruit kabobs (check for allergies first)
  7. Pin the heart on Cupid
  8. Bowling for hearts
  9. Decorate a picture frame for parents
  10. Minute to Win it games
  11. Musical chairs
  12. Freeze dance

Morgan says: Well, Valentine’s Day has been a very interesting experience, especially with school. Let’s go with what worked first. In third grade, my teacher asked that all the Valentine boxes be put in the hallway. That definitely worked, so that there would be no problems with M&M’s and various other candies that were brought in with the Valentine cards. My fourth grade teacher asked that no candy be brought in, and said that she would supply safe candy. This definitely worked. We had a dance that year during the school day and everyone dressed up. It was great!

In fifth grade, my teacher asked that no candy be brought in and she would supply none either. She was tired of all the sweets brought into school.

What didn’t work? In second grade, a kid brought in peanut M&M’s as treats with his cards. That did not go over well. He was Chinese and knew only a little English though so that was technically a misunderstanding. He brought in his cards early, so my teacher was able to send the candy and the cards home and ask his parents to help him bring in something safe.

In 6th grade, I wasn’t in school on Valentine’s Day because it was a teacher workday in our district. Our classrooms didn’t have any parties. Students could sign up for a candy stick to be sent to a ‘special someone.’ I didn’t sign up for one or receive one. In 7th and 8th grade, this candy stick event didn’t go. Nothing really happened for Valentine’s Day, besides a hat day or a fundraising event.

In high school, there are no classroom parties for Valentine’s Day nor is there anything to purchase to send to someone.

Overall, it’s a great opportunity for food allergic children to practice self-advocacy.

Back to Mom:

Isn’t it amazing how many holidays and celebrations involve food? We never realized how much food is a part of the American culture until we had a child with food allergies. With Valentine’s Day we had to always be mindful of the various ways that our son could come in contact with his allergens.

Many children at our son’s elementary school brought in candy along with Valentine’s Day cards. Yearly, we reminded our son and his teacher to watch for unsafe candy coming into the classroom. It’s always best to prepare for such prior to the event occurring and to ensure your child’s teacher knows what to do!

We’ve found that many candies are not safe for the peanut, nut or milk allergic. Reminding teachers to ask students to bring in safe treats, or none at all increases awareness of food allergies when students and parents may not remember. One year when my son was in preschool, a parent was asked by the teacher to please bring in safe candies, upon which she commented, “you mean he’s still allergic?” Yes! Every day of the year, he’s still allergic!

We hope that you can enjoy Valentine’s Day this year safely and maybe without food being part of the celebration at school!

Court cases define Food Allergy as a Disability

Recent court settlements have determined that a child or student’s food allergy is a disability. While I would have cringed several years ago to think that my son has a disability, I now see this as welcome news!

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Here are the details of the first lawsuit: A lawsuit was filed by Shannon Knudson against Tiger Tots Community Care Center after they refused to accept her daughter with tree nut allergies in to their care because they feared liability. Ms. Knudson claimed that the daycare was discriminating against her daughter and should be forced to accommodate her. The ruling won on appeal, overturning a lower court’s opinion which said that the daycare had the right to refuse a child whose care would be extraordinarily burdensome. The Iowa appeals court disagreed. They said the child’s allergy is a disability and must be accommodated under the American Disabilities Act. More information about this ruling can be found here.

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The other settlement was between the Department of Justice and Lesley University, a private non-profit institution of approximately 8,000 students in Cambridge, Massachusetts. The Lesley settlement stemmed from a student complaint in October 2009, which alleged that the university violated ADA (American with Disabilities Act) by neither addressing the needs of students with food allergies nor ensuring them an equivalent dining experience. Under the settlement terms, Lesley – and presumably, other institutions that want to stay in line with ADA – must do more than simply provide gluten- and allergen-free options in its cafeterias. It must also develop individualized meal plans for students with food allergies and allow them to preorder meals; provide a dedicated space in its main dining hall to store and prepare foods to avoid cross-contamination; display notices concerning food allergies and identify foods that contain specific allergens; train food service and staff about food allergies; and try to retain vendors that offer food without allergens. More information about this settlement can be found here.

Both of these institutions – Tiger Tots Community Care Center and  Lesley University – are NOT K-12 schools required to provide FAPE – Free Appropriate Public Education. Therefore, these rulings have really changed the landscape for day care centers and colleges. The fact that Lesley University is a private institution means that the Department of Justice oversees them, rather than the Office of Civil Rights. However, the ADA rules still apply. The rulings have determined that in these cases, food allergies are a disability. Why is that a good thing for your child?

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First let me say that when I look at my son, Morgan, I don’t see a disabled child. I see my wonderful son, who has a hidden disability. The question that has to be answered in regard to a disability is: Does a child’s impairment substantially limit one or more major life activities defined by the ADA Amendments Act of 2008 ? An episodic impairment like diabetes or food allergies is  a disability because they substantially limit a major life activity when they are in an active phase. And for school and college, that definition of a ‘disability’ works for us because my son does need accommodations in order to remain safe and to have equal access to the curriculum.

Gone are the days when a child with food allergies is seen as an imposition in a school or day care. It’s not up to parents to beg and plead for a safe classroom, hoping that some kind-hearted administrator will ‘get it.’ We have the law on our side, and it comes in the form of allowing the classification of our children’s life threatening food allergies as a ‘disability.’

 

 

 

Food Allergy Anaphylaxis – A Tragedy

Some children will have mild reactions to eating a food they are allergic to. They may experience watery eyes, a runny nose or hives, and then quickly recover with a dose of Benadryl®. Still others may vomit and immediately feel better. Other children will experience anaphylaxis, the most severe of allergic reactions and end up in the emergency room receiving shots of epinephrine. Tragically, some children will die.

This is a picture of Sabrina Shannon, a 13 year old Canadian girl when she died at school from anaphylaxis to dairy in 2003. Sabrina’s mother, Sara, has become one of the most renowned advocates of food allergy guidelines in schools to help children with food allergies stay safe. I’ve met Sara, and to say that she is wonderful doesn’t begin to explain her fortitude. I can’t imagine becoming an advocate at the level that she has – and she lost her only child. She understands how serious anaphylaxis is. Now, she just needs to impress that upon the rest of the world.

Friends and family couldn’t understand how vigilant we needed to be when our son, Morgan, was diagnosed with food allergies. How can anyone die from eating one bite of a food? Is it really necessary to read EVERY label of EVERY food that is eaten? We heard these questions and more: Why can’t your child eat the cake I made for the birthday party? Won’t he grow out of his severe food allergies?

It is estimated that five Americans die each day from anaphylaxis (from allergic reactions to medicines, food and/or insect stings). Tens of thousands of emergency room visits occur each year from anaphylaxis.

The most recent tragedy involved a 15 year old British boy who died after eating what he thought was a safe carry out meal at a restaurant. You can read about that story here.

Accidents occur, and for the food allergic child, such an accident can cause death. It is the reality of what we live with daily. We try to not focus on this; instead we try to gain an understanding of what we can learn from these tragedies. This is a preventable death, and our family does everything we can to stay safe and enjoy life.

In the April 2007 “Journal of Allergy & Clinical Immunology” research was submitted on the deaths of 31 individuals who suffered fatal anaphylaxis. Peanuts accounted for 17 of the deaths (55%); tree nuts caused 8; milk caused 4; and shrimp 2.  Epinephrine availability is a key factor in the cause of death with only 4 of the fatalities having received epinephrine in a timely fashion.

What can be learned from these tragedies for those of us with food allergic children?

It seems to me that education and awareness are the footwork that is available to us all. The more people are aware that my son has severe, life threatening food allergies, the better the chance that he will not experience anaphylaxis. Telling family members, friends, teachers, etc., about his food allergies is necessary so that they realize what they eat could potentially impact him.

Secondly, my son needs to be his own advocate. I hope that impressing a teenage girl won’t scramble his brain to the point that he forgets what he’s allergic to now that he’s a teenager! Learning at a young age how to advocate for his safety was something we worked on daily. Lastly, our allergist has told us that children with a dual diagnosis of asthma and food allergies have much more likelihood to experience anaphylaxis. For that reason, more precautions will have to be practiced. For better or worse, my son will have to know what his date ate for dinner, and maybe even for lunch!

Dr. David Fleischer, an Allergist & Immunologist at National Jewish Hospital in Denver, told Morgan and I that Morgan could have a reaction to kissing a girl if she ate one of his allergens within the previous 2 hours. She could mitigate this issue by not eating the particular food (best choice!) or by eating some other food or brushing her teeth to remove the allergen.

Various research has shown that teenagers are the highest risk group for fatalities from allergic reactions. Teenagers, in general, tend to believe they are invincible, and are more likely to take risks. When it comes to food allergies, they are less likely to have an EpiPen immediately available, and are no longer under the watchful and careful eye of their parents. Only 61% of teens reported always carrying their EpiPen in a “Risk Taking Study” by Dr. Hugh Sampson of Mt. Sinai Hospital.  In our house, we want 100% compliance with EpiPen carrying!

Food allergy reactions are extremely serious. I want to give my son every chance to learn from others, be a good advocate and enjoy life … while always carrying his two EpiPens!

Marriage, Divorce and Children with Food Allergies

If you have a child with life threatening food allergies, I’m sure you know how stressful daily living can be and how difficult it is to keep your marriage healthy and happy in the middle of all that stress. My husband, Bob, and I wrote about the Emotional Aspects of Food Allergy on Marriage in a previous blog post here.

If you’re beyond the point of staying in your marriage, my interview with Elizabeth Goldenberg is below. Elizabeth Goldenberg is the Founder and President of Onespot Allergy, a blog and retail site dedicated to food allergy safety and legal issues since 2009. She is also President of EpiCenter Medical Inc, co-founded in 2012 with Toronto Allergist Dr. Mark Greenwald, which focuses on access to epinephrine and anaphylaxis first aid training.

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Hello Elizabeth. Not only are you a divorce attorney, but also the Founder of Onespot Allergy. Can you tell us a little information about both of these careers?
I’ve been a divorce lawyer for 20 years, and I’ve practiced as a sole practitioner for my entire career. I’m actually very well suited for that work and extremely effective at it. When my younger son with diagnosed with severe food allergies eight years ago, after I learned how to keep him safe, I had a business idea. I held onto that idea for several years, then finally gave myself permission to start Onespot Allergy. I know too many people who refused business opportunities because they were afraid to take a risk, and I didn’t want to be one of them. I now spend only 20% or my time practising law. In the new year, I may cut back my practice even more because I’ve partnered with a Toronto Allergist, and we’re launching two new allergy safety products.

What food allergies does your son have and how old is he?

I have two sons, Aaron and Jacob. Aaron has no food allergies, and Jacob is severely allergic to peanuts and tree nuts. Jacob is now ten years old, and he’s doing very well.

Not having ever experienced divorce, what issues are you seeing regarding children with food allergies when a divorce occurs?

I’ve represented 817 divorcing spouses (but who’s counting). I ask every parent during the intake interview if their children have any special needs. Given that 1 in 13 children has food allergies, I should have seen over 100 parents of children with food allergies. Until very recently, no one raised food allergies as a concern. I suspect they don’t think of food allergies as a special need, and now that you’ve caused me to reflect on this, I will revise my intake interview to include a more specific question.

I was consulted on only one case where a child’s anaphylactic food allergies were the main issue inhibiting access to the child by his father. In that case, the father wanted to take the child on extended trips and to family events, but he’d never learned how to choose or prepare safe food for his son, how to inform caterers and hosts of his son’s special dietary needs, how to avoid accidental exposure, or how to recognize anaphylaxis. He knew how to use an EpiPen, but without avoidance training and the ability to recognize anaphylaxis, that wasn’t satisfactory. During one anaphylactic episode that occurred while he was having access, he left the emergency department and drove his son home while the poor child was still unconscious. Understandably, the mother had deep concerns about his most recent request to travel with the child to attend a wedding and related events. She proposed to escort the child and attend to most of his needs while letting the child attend the events without her, but the father applied to Court, since he wanted his son to make the trip alone.

What can parents who are divorcing do better to take care of their food allergic child?

A certain amount of chaos develops upon separation, as each spouse adjusts to parenting alone. Sometimes the children’s needs aren’t taken care of as effectively, for example, notes from the school don’t get shown to both parents, homework or backpacks might be left at the other parent’s house when needed for school, and permission forms might not get signed. There’s just general confusion as the dust settles.

A child with food allergies can’t afford any mistakes to happen when it comes to his or her allergy management. As much attention as prior to separation needs to be given to his or her food safety, avoidance measures at home and at school, medical forms for the school, training of teachers to recognize and treat anaphylaxis, and having EpiPens always in reach. I recommend that children always wear two EpiPens or at least one in an EpiPen belt, rather than keeping them in a backpack or loose, since they can easily be left behind. That belt must stay on the child and move with the child between each parent’s home and school, since if it’s misplaced and a reaction occurs, there can be deadly consequences. Putting the allergic child’s needs first and staying completely focused on carrying them out during separation and divorce is the key.

In relation to custody issues do the courts view children with food allergies any differently than non-allergic children?

In my jurisdiction, custody and access decisions are based on the “best interests of the child.” You use the facts of a case to make arguments in support of your client’s position, and food allergies could definitely form part of your argument and influence a decision for custody or access to that child.

Having sole custody means that you have sole decision making power. Parents may not be able to make decisions together as joint custodial parents, if one parent is uneducated or negligent about food allergies. Access to a child can be completely unrestricted, have terms attached to it, or even be supervised. If a child were repeatedly exposed to his or her allergen by an access parent, you would want to attach terms to the Order. Examples would be providing that the child must only eat food supplied from the custodial parent’s home, that the child must be in the care of the access parent the entire time (no babysitters or only approved babysitters), that EpiPens must be kept with the child at all times, or that access occur only within a reasonable distance from a major medical center.

Have custody cases been decided based upon which parent understands food allergies better? Or which parent can provide a safer home?

Definitely. The case I described involving a trip for a family event was decided completely upon the father’s lack of understanding of food allergies, and his motion to the Court was unsuccessful. Every custody case is decided upon the child’s best interests, and an aspect of that is which parent can provide a safer home. The facts surrounding each parent’s food allergy management skills would be one factor to be considered.

How is ensuring that your child’s food allergies are properly managed by your ex-spouse different from going to the extreme and being accused of Parental Alienation Syndrome?

Typically for any serious allegation affecting custody or access, like allergy negligence or excessive drinking, the spouse would have documented concerns from prior to separation and there would be ongoing incidents after separation. I would ensure that anything you’re alleging is well documented, preferably by doctors, rather than relatives swearing supporting Affidavits. When there’s a clear trail like that to follow, rather than allegations arising only after separation, a parental alienation argument would not be successful. After so many years of divorce cases, I’ve never had a client accused of parental alienation, so it’s a stretch for me to imagine food allergy concerns being used to support that argument.

Is there anything else you would like to add?

I want to thank you for this opportunity to weave my legal experience into my work as an allergy advocate. I thought my career was taking a 180 degree turn from law when I started Onespot Allergy, and it’s lovely to contribute where law and allergy intersect, bringing my passion for allergy safety full circle into my work as a lawyer.

Thank you Elizabeth!

Pumpkin Bread – Nut, Peanut, Dairy & Soy Free!

This is a food allergy favorite recipe of ours – especially at this time of year! You can also make it egg and/or wheat free by substituting safe egg replacer or a gluten-free flour mix.

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Pumpkin Bread – makes 2 loaves

Grease bottoms only of two 9x5x3 loaf pans with safe butter or our favorite – canola oil.

Mix together:

3 1/2 c. flour

2 teaspoon baking soda

1/2 teaspoon baking powder

1 1/2 teaspoon salt

2 teaspoons pumpkin pie seasoning  – and set aside.

3 cups sugar

1 cup vegetable oil

4 eggs

1-15 ounce can of pumpkin

Directions: Beat eggs. Add sugar and oil and beat.

Add pumpkin to the mixture and beat again. Add dry ingredients. Beat until smooth, not lumpy.

Bake for one hour at 350 degrees. Allow to cool prior to removing from baking pan and slicing.

Eat and enjoy! It’s especially good with a cup of (safe) hot chocolate – with marshmallows of course.

 

Becoming Part of a Food Allergy Support Group

I have found it really helpful to be part of a local support group of food allergy families. Our local group is called MOSAIC – Mothers of Severely Allergic Infants and Children in Colorado Springs, Colorado. There’s a very active MOSAIC group in Denver, Colorado which has been meeting for several years. Our group in Colorado Springs is newer, but we continue to grow and to have great meetings.

It’s great to have other food allergic parents to talk to about schools, local grocery stores and local laws. In fact, our group had a paramedic come to one of our meetings and tell us what would occur should one of our children go into anaphylaxis.

A local allergist and I started the MOSAIC group here by contacting as many people as we knew who have food allergies in their family. Then, he continued to give the information to his patients as they were diagnosed. The group has continued to grow from there. Other allergists in town now participate in the group and give out flyers to their patients. We’ve had several discussions about accommodations for food allergies in school. We’ve also discussed Eosinophilic Esophagitis, nutrition for children with food allergies, the emotional aspects of food allergies – the list goes on and on!

If you are a member of a support group, please let me know and I’ll send you an AllergicChild brochure for FREE via email to pass out to your members. If there’s no support group in your area, maybe you should start one! Speak with your allergist about other families in your area who have food allergic children, and start from there.

Some support groups combine efforts to get legislation passed in their state. The picture above shows several Colorado support group leaders with their children watching while then Colorado Governor Ritter signs into law the COLORADO SCHOOL CHILDREN’S FOOD ALLERGY AND ANAPHYLAXIS MANAGEMENT ACT. Since meeting through the process of getting this legislation signed, the Colorado support group leaders meet once a year to discuss food allergy issues and initiatives in the state. It’s a great group of advocates, and lifelong friendships have transpired.

Our statewide support group leaders also help to run booths at the  FAAN (Food Allergy & Anaphylaxis Network) walk. There’s no end to what several concerned parents can do!

Thanksgiving and Food Allergy Safety

The Thanksgiving holiday is almost upon us, and if you’re like us food allergies can take center stage! This can be a wonderful time of joy and sharing time with friends and extended family members. It can also be a stressful time worrying about what your child eats or what food is being served!

A plan of action before the day is a must.

We have spent Thanksgiving Day at home and at the home of relatives. I’ve found myself being more comfortable in the safety of our home because I know what foods have been made in the kitchen. If your child has pet allergies in addition to food allergies, as our son does, then all celebrations need to occur in a safe location. For years, that was at our house, because all the relatives had dogs or cats.

When we do go out of town, we have rented a condominium that is pet and smoke free, and then we invite the relatives there. If you don’t have these multiple limitations, you can still choose a safe location where the food can be monitored in its preparation. This might end up being at your house to ensure no cross-contamination issues.

Plan for the food.

We have found that it works best if we give our relatives a list of food items that our son cannot eat. We have explained to them the seriousness of the potential reaction, and that he cannot even touch peanuts, tree nuts, sesame seeds, fish and shellfish. I can tell you that the best laid plans still aren’t followed in the cases of some families like ours! At times like this, we’ve found that it’s best to get out of their kitchen, and carefully monitor our son’s whereabouts. If possible, we remove the offending food item, especially if it won’t seriously damage the family relationships.

Make sure that you read all labels of any store-bought products.

Natural flavors can include almost anything. Call the product manufacturer prior to the day of Thanksgiving to ensure the product is safe. Waiting until the day of Thanksgiving will be too late, since most manufacturers are closed for the holiday! For home baked items we’ve found it’s best to make them ourselves. There’s always a chance of a peanut butter sandwich being in the kitchen while the other food items are prepared at someone else’s house. Where we would be careful about such a chance of cross-contact, people unaware and inexperienced with food allergies wouldn’t necessarily take such a precaution.

Traveling with Food Allergies

Traveling by car is easier than traveling by plane, especially if you plan on bringing safe foods from home. We’ve traveled many times by car, and brought a cooler of food. I’ve even heard of some families traveling with a refrigerator and microwave to ensure safe meals for a long road trip! Some airlines will announce a peanut-free flight; however I’ve heard from many families that giving the airlines the information about your child’s peanut allergies at the time of reservations doesn’t necessarily mean the flight will be peanut-free when you arrive at the airport. Various airlines have information on their websites stating they are peanut-free, yet I’ve seen these exact airlines serve nut and peanut products!

Find out what is being served on the flight when you make a reservation and request a peanut-free flight. Then be prepared to speak with the ticket agent and others when you arrive at the airport. Bring hand wipes, and even a twin sized sheet to put on the airline seat to protect your child from having any contact reaction. Traveling in the morning is better because the planes tend to be cleaner. Let the flight attendant know about your child’s food allergies. With so many people bringing food onto airline flights today, there’s a high likelihood that someone will bring on peanuts or nuts to eat while in flight. You may be able to change seats should that someone be seated right next to you! The flight attendant may also be willing to announce a peanut-free flight over the loudspeaker, or provide a 3 row buffer zone in front of and behind you.

My son and I have flown Southwest Airlines for the past several years, and have had very good experiences overall. While other flights are served peanuts, our flight is not. When we purchase the tickets online, there’s an area to mark a disability. Peanut dust allergy is listed in this area. When we arrive at the airport, my son is given a pre-boarding pass which allows us to pre-board the plane, wipe down his seat, tray table and surrounding area. He has never had an issue with any peanut residue left from previous flights, but if your child is HIGHLY sensitive this airline may not be your best choice.

Plan for the fun.

We try to focus as much on non-food fun for our son’s sake so that the entire holiday doesn’t end up being a long list of don’ts. We take a walk, play board games, and play cards. We make sure that every visitor is aware of our son’s allergies so that they can protect him from harm. Morgan’s allergies were better understood by the other children in the family– almost more than the adults – when he was young! The children wanted Morgan to be a part of the fun, so they were careful about their food choices.

We have more information about traveling and eating out with food allergies click here

Let me know what has worked for you on Thanksgiving by emailing me – Nicole at AllergicChild.com .

Interview with Susan Weissman, Author of Feeding Eden & her son, Eden

Susan Weissman is the author of Feeding Eden: The Trials and Triumphs of a Food Allergy Family, a mother’s story of her son’s childhood food allergies and the life of her family.  Susan was a middle-school English teacher before turning to writing full-time. She writes for The Huffington Post and Psychology Today, has contributed to Parent & Child, Allergic Living, and various sites on the topic of allergies and parenting. She was a PBS Parent Expert. Susan holds an M.Ed and is committed to strengthening the relationship between teachers and parents, and providing information to expand awareness around an issue that affects so many of us. Her son, Eden, is now almost 10 years old.

Susan, what made you decide to write Feeding Eden: The Trials and Triumphs of a Food Allergy Family?
Like so many other food allergy parents, I felt that with all we had gone through, there had to be a way to make some sense out of what was happening, and maybe help others.  After I started, and I began to achieve some rhythm with the project, I raised my sights a bit.  I decided I wanted food allergies families to know that they were not alone. And I wanted families, teachers, grandparents, even doctors and nurses, to understand what the food allergy life feels like for us.

What I wasn’t quite prepared for after Feeding Eden was published was that so many parents would reach out to tell me that they felt like they were reading the story of their allergic family and their parenting experiences.

For parents reading this interview, what hope or suggestions can you give those newly diagnosed or still struggling to get an accurate diagnosis?
I’d say that parents should have hope and optimism as they help their children navigate their allergic condition but they must have the right doctor and accurate diagnosis. The first step: make sure parents and their doctors are communicating clearly about tests results and what I call “food history.” This is the key to defining an allergic child’s medical needs. In the first chapter of my book, titled Searching For a Savior, I describe how I bounced between specialists like a ping-pong ball, waiting for one of them to “save” Eden from his symptoms. The problem was that I needed to find an allergist whose treatment I could both understand and implement.

You mention in your book attending a support group meeting. Do you still participate in one? What value do you find for parents managing food allergies in attending support groups?
I do still participate because there is always something to learn and share. The great thing about a food allergy support group is that even if you don’t feel like sharing your personal concerns or questions (for example – how your mother-in-law just “doesn’t get it” or how hard it is to convince your teenager to wear their medical ID bracelet) simply listening to the other parents’ stories helps everyone. Time and again, I’ve been in an unfamiliar situation with Eden, and I’ll think back to other parents’ suggestions. It’s a great way to learn about resources in your community, vent frustrations in a safe environment and learn about the latest food allergy research and treatment progress. And it’s a way to “give back” even to people who don’t read the book.

Do you have plans for an additional book?

Right now, my focus is on bringing Feeding Eden into schools and family communities all around the country.

Do you have a blog (or somewhere else on the Internet that you write?)
Yes. I write at www.susanweissman.com On my site, I have a blog where I post on topics of interest to all parents, including allergy friendly recipes and food ideas. I also contribute to The Huffington Post, Psychology Today and a site called Asthma Allergies Children, among others.


Eden, thank you for being willing to answer some questions for our readers.
Are you old enough now to carry your EpiPen at school? What about on the weekends or when you and your family go out – who carries your EpiPen?
No, I don’t carry my EpiPen at school. I have two emergency kits, one is with the teachers and the other one is with the nurse. On the weekends my parents carry it. Or whoever I’m with.

I have a lot of readers who have preschool age children with food allergies. What can you suggest for these kids with food allergies when someone offers them food to eat?
I don’t think I’ve been offered food I’m allergic to at school, even pre-school, really since everybody knows I’m allergic before the school year starts. Once in a after school class a PE teacher told everyone they could have a cookie that I knew wasn’t safe so I just didn’t take one. But if they can maybe they should say, “I have food allergies. Do you know what is in the food?” That’s what I say to anyone who offers me food and I’m not sure. Then I read the label too.

Eden, when you go out Trick-or-Treating for Halloween, how do you manage your food allergies?

I go out Trick-Or-Treating I try to take safe stuff, but there usually isn’t a lot.

Does your family have any “rules” about the candy that’s brought into your home later?

If something isn’t safe in my bag I give it to my sister and my dad. I don’t really care about the candy. It’s gets annoying that I don’t have as much to eat but I just like the fun of trick or treating.

Do you know what you’re going to dress up as this Halloween?

A Dark Sorcerer

Thank you Susan and Eden!