Shopping at Costco for Food Allergy Families

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People often ask if a Costco membership is worth it when a lot of what you’ll find in any store, let alone a membership based one, isn’t an option when you have food allergic individuals at home.  Produce and basics aside, I wanted to write about a few finds this past week at our Henderson Costco.  Be advised that these selections are specific to our Southwest region of the country and that no one paid me to write any of this though Happy Family and Luke’s were FABlogCon sponsors last year.

This post has been on my mind since I first wrote about Kirkland’s Ricemilk (here and here) but thank you to Sharon Wong from Nut Free Wok for encouraging me to get it done!  The photos are just from my phone so they are more illustrative and informative than pinterest-worthy.  As always, call companies to verify a food’s appropriateness for you.  I uploaded these files at full resolution so you can click on the images and peek at ingredient labels if you are interested in seeking a product out.

Corn Tortillas

Tortilla Land Tortillas

Tortilla Land Tortillas

When E outgrew her corn allergy but had not yet outgrown her wheat allergy, these were a great option.  I usually am not a fan of corn tortillas but you cook these up fresh and they are wonderful in recipes like enchiladas.  60 for $6.39, I’m not sure if they freeze well or not.

Tortilla Land Tortillas

Tortilla Land Tortillas

Kirkland Ricemilk

Kirkland Ricemilk

Kirkland Ricemilk

Read more about the ingredients here and about their stock status here for Kirkland Organic Ricemilk.  We use it almost exclusively even though milk is now technically a safe option for us.  Unlike many Ricemilks, it is not in a shared facility with nuts per my last communication with Costco corporate.  $13.99 for 12 containers with 4 cups in each.

Kirkland Ricemilk

Kirkland Ricemilk

Udi’s Granola

Udi's Granola (not safe for nut allergies)

Udi’s Granola (not safe for nut allergies)

We can’t have oats, peanuts, tree nuts, or sesame so this Granola isn’t an option but I include it here for my gluten free and vegan friends that may not be aware Costco is carrying products by Udi’s.  My favorite nut free and oat free granola is by Enjoy Life but I don’t know if they’ll break into Costco with anything other than Plentils for the time being.  $6.79.

Udi's Granola (not safe for nut allergies)

Udi’s Granola (not safe for nut allergies)

Luke’s MultiGrain & Seed Crackers – Chia Seed

Luke's Crackers

Luke’s Crackers

Luke’s crackers are pretty tasty and though my favorite of their products would have to be their chips (and even some of those have sesame), I love that an allergy aware company is featured at Costco.  This particular box consists of two large backs of the crackers (not snack packs like I assumed when I first purchased them) and the flavor is very neutral.  $7.99.

Luke's Crackers

Luke’s Crackers

Nutiva Coconut Oil

Nutiva Coconut Oil (Peanut Facility Warning)

Nutiva Coconut Oil (Peanut Facility Warning)

I am sharing Nutiva’s coconut oil in a cautionary way since they now carry a shared with peanut oil in the facility warning.  We haven’t bought it since but it may still be a safe option for some!

Peanut warning on Nutiva Coconut Oil

Peanut warning on Nutiva Coconut Oil

Krusteaz Gluten Free Brownie Mix

Krusteaz Gluten Free Brownie Mix

Krusteaz Gluten Free Brownie Mix

I purchased this for my sister in law, who is doesn’t eat wheat or gluten products, so I could make an easy treat considering we don’t stock gluten free flours the way we used to at home when E was allergic to wheat.  She really enjoyed baking with these mixes and liked the results.  Great price, but again, I didn’t buy these necessarily for my daughter so I don’t know what other factors may come into play ingredient-wise.  Just nice to see gluten free options for people!  $7.99.

Krusteaz Gluten Free Brownie Mix

Krusteaz Gluten Free Brownie Mix

Mamma Chia Chia Squeeze

Mamma Chia Chia Squeeze

Mamma Chia Chia Squeeze

When I was a kid we didn’t eat anything out of a pouch. . .well, I guess except for drinking Capri-Sun “juice.”  But I digress.  My kids love all things pouch based it seems and Costco is in tune with that.  $11.99.

Mamma Chia

Mamma Chia

Go Go Squeez

Go Go Squeez

Go Go Squeez

These applesauce pouches are E and R’s favorite – my daughter even wrote the company a letter (with her Auntie’s help) to thank them for being nut free.  You may think, of course applesauce is nut free, but it is nice to see Go Go Squeez taking pride in that.  $10.99.

Go Go Squeez Applesauces

Go Go Squeez Applesauces

Happy Family Fruit and Veggie Twists

Happy Family Pouches

Happy Family Pouches

Happy Family also has a line of fruit sauce pouches but crazily these were stacked right next to the powdered peanut butter in the store (just an observation, I know everything is sealed) and they have this little note on them saying your purchase supports “Operation Peanut Butter.”  I looked into it and it is actually a program to help with starvation around the world in children with peanut butter enriched with other ingredients.  Every purchase supports this project.  You can watch a video clip from Happy Family about Operation Peanut Butter here.  I personally would like to know more about the way they are approaching this program but their hearts are in the right place and it is not an implication regarding the manufacture of these pouches themselves.  I just was surprised by the new reference on the label and looked into it a bit.

Happy Family Fruit and Veggie Twists

Happy Family Fruit and Veggie Twists

Essential Bakery Seeded Gluten Free Bread

Essential Bakery Seeded Gluten Free Bread

Essential Bakery Seeded Gluten Free Bread

We stumbled upon this bread a while back and bought some to try when my sister in law visited.  No nuts, gluten, dairy or soy!  It is also delicious toasted or untoasted so do check it out.  $7.99 for two sizable loaves of yummy gluten free bread is a great deal too.

Essential Bakery Seeded Gluten Free Bread

Essential Bakery Seeded Gluten Free Bread

 Stretch Island Fruit Leathers

Stretch Island Fruit Leathers

Stretch Island Fruit Leathers

$10.59 for 48 fruit leathers that sell at supermarket checkouts for 50 cents apiece is a substantial deal (22 cents apiece, in fact).  All of these fruit leathers are natural and make for a good purse/diaper bag emergency snack.

Stretch Island Fruit Leathers

Stretch Island Fruit Leathers

Yummy Earth Fruit Snacks

Yummy Earth Fruit Snacks

Yummy Earth Fruit Snacks

40 fruit snacks from one of our favorite companies, Yummy Earth!  These are even gelatin free.  I like to buy things like this for my daughter’s class so they have safe treats on hand in case a student forgets a snack at home.

Yummy Earth Fruit Snacks

Yummy Earth Fruit Snacks

Jelly Belly Halloween Mix (Peanut Free)

Jelly Belly Halloween Mix (Peanut Free)

Jelly Belly Halloween Mix (Peanut Free)

100 individual bags of Jelly Belly jelly beans for $9.79 – I bought these for my daughter’s school Trunk or Treat so they could pass out peanut free options.  Please confirm that these are safe for other allergies of course.

Jelly Belly Halloween Mix (Peanut Free)

Jelly Belly Halloween Mix (Peanut Free)

Annie’s Crackers

Annie's Crackers

Annie’s Crackers

These are wheat based crackers but another option for in class snacks at $11.89.  They do have soy and milk alerts in addition to wheat, I am glad for the absence of oats on these.

Annie's Crackers

Annie’s Crackers

Kirkland Tortilla Chips

Kirkland Tortilla Chips

Kirkland Tortilla Chips

We buy the non-organic Kirkland corn chips for a very good reason – the Organic variety has a nut warning.  Click here to see the front and back of the Organic variety.  We once grabbed the wrong one by accident so I thought I’d mention it.  $4.99.

Kirkland Tortilla Strips (Choose the Non-Organic Variety to Avoid a Nut Warning)

Kirkland Tortilla Strips (Choose the Non-Organic Variety to Avoid a Nut Warning)

Kettle Potato Chips (Kirkland)

Kettle Potato Chips (Kirkland)

Kettle Potato Chips (Kirkland)

$4.79 for a bag of potato chips bigger than your head can’t be beat.  I like to eat these with salsa which I know makes me weird but I don’t mind.

Kettle Potato Chips (Kirkland)

Kettle Potato Chips (Kirkland)

Honest Company Shampoo

Honest Company Shampoo

Honest Company Shampoo

I haven’t purchased this shampoo but the label looks promising.  Have any of you tried it?  $14.99 is spendy for me but it might be a good option given the ingredient list.

Honest Company Shampoo

Honest Company Shampoo

Allergy Medicine

Allergy Medicine

Allergy Medicine

I have yet to fill an epinephrine prescription at Costco (see also: my posts about EpiPen and Auvi-Q two packs and expiration dates) but we do get Zyrtec, Claritin, and Benadryl there for time to time.

And on an amusing note…

I spotted this cart at checkout – when we entered the store Costco had a display for singing Olaf dolls.  R wanted one and I said no but a lot of parents had their kids playing with them in their carts so it was funny to see how many ended up on the “re-stock” pile.  Poor Olaf!  Don’t worry, some grandparent is going to buy you anyway so you can sing for the whole family at home. . .

Discarded Olaf Dolls

Discarded Olaf Dolls

So!  I hope this was of interest – I’d love to know what food allergy friendly finds you have at your local Costco because I’m a Costco nerd (Exhibit A).

Review: Dreamy Desserts Nut Free Bakery in Las Vegas, Nevada

Nut Free Cake by Dreamy Desserts (image courtesy of Dreamy Desserts)
Nut Free Cake by Dreamy Desserts (image courtesy of Dreamy Desserts)

It has been almost two months since E’s 6th birthday and she knew she wanted a “store bought” cake.  Not “mommy made.”  It had to be “Frozen” themed and as her RSVP list grew the prospective cake did as well.  I had been watching with fascination the updates on twitter and facebook of Penny Redlin, owner of Dreamy Desserts (a nut free online bakery based in Las Vegas), and knew that the nut free made to order bakery was my “store bought” solution.

Frozen Birthday Decorations

Frozen Birthday Decorations

Penny was incredibly friendly and helpful with the process.  Given her time limitations she fills up reservation spots on her calendar and as your date nears you can get in touch and firm up what you’d like.  I actually shipped (via Amazon Prime) cake toppers directly to Penny to make the process that much easier.  Advance ordering isn’t just for cakes but for other treats like cookies or parfaits as well.

Elsa

Elsa

Dreamy Desserts is Las Vegas based so if you’re traveling to town for an event you can order in advance and even pay to have your order delivered if you are within a certain range.  I sprang for delivery because I had no idea how to transport E’s cake.  The best part of doing business with a fellow food allergy parent is that you can ask all kinds of questions and never feel silly – there’s a detailed answer in response and even frank discussion of kitchen practices for those allergens that are off the beaten path (oat and sesame for us on top of peanut and tree nut).  Dreamy Desserts can make vegan cakes as well, which we debated to be more inclusive of E’s dear friend K but after consulting with K’s mother she was going to make her own matching cupcakes (see, I’m not the only one!) for the party.

Image Courtesy of Dreamy Desserts

Image Courtesy of Dreamy Desserts

More about Dreamy Desserts:

Dreamy Desserts was created for anyone looking for nut free treats.  Sadly, my son can not have peanuts or tree nuts.  As it turns out, I have over 20 years of baking experience, so I decided to offer nut free baked goods to others with a similar need. 

We are an online bakery based in Las Vegas, NV.  We can deliver any of our nut-free treats within the Las Vegas area!

If you don’t see what you’re looking for, just ask, we may be able to accommodate

 (as long it doesn’t have nuts!) 

(source: Dreamy Desserts).

I should stop rambling and offer the big reveal – the look on her face made it so worth it.  E’s  6th birthday “Frozen” cake…

Peanut Free, Tree Nut Free, Oat Free, and Sesame Free Frozen Birthday Cake

Peanut Free, Tree Nut Free, Oat Free, and Sesame Free Frozen Birthday Cake

The snowflakes were a mix of sugar (the smaller ones) while the larger details were a vegan fondant.  The frosting sparkled and the cake was white with strawberry preserves.

Frozen Birthday Cake by Dreamy Desserts

Frozen Birthday Cake by Dreamy Desserts

E was delighted, as was I.  Penny didn’t ask me to write about this but I kept meaning to highlight how wonderful she is to put so much love and care into making special treats for those that live with food allergies.  By the way, Dreamy Desserts’ Facebook page is really close to breaking 20,000 likes so if you’d like to see other delicious options as photos are posted, head on over!

____

Also at E’s birthday was my friend Pamela Sundlie, owner of Magic Wand Face Painting, who did a fantastic job with face painting and glitter tattoos for the kids.  Best of all, she had her ingredient sheets with her (and we’d gone over them in advance of course) so there were only adorably painted faces and no itchy cheeks.  I love that we can support the creativity of our local friends while also having a great time.  This was E’s first solo party since before R was born (we’ve been doing joint parties) so I wanted it to be special – I warned her that I can’t really top her 6th party until perhaps her wedding day.  She seemed okay with that.

The Birthday Party Mistake

You know you’re a food allergy mom if…

When a birthday party invitation comes in, you go straight into planning mode.  At leas this is what my preparations usually include, and did, for a joint birthday party for two friends of my daughter from school.

Find out what cake is being served.

Even with safe ingredients in a potentially offered cake, it just never feels worth the risk (or pressure on the host parent) to eat the cake there, so I like to find out what kind of cake is being served so my kids can get a similarly decorated/flavored/themed version.  For Sunday’s party, that was rainbow cake so we broke out the rainbow sprinkles for decorating.

Advance coordination with the host parent(s).

I am truly lucky that when we’re invited to a party, parents go above and beyond to include E in the festivities.  This time, it meant getting contacted by the family and being asked what candy would be safe for a piñata so that they could have options for E and R to enjoy.  How awesome is that?  And just the other week, a friend offered to bake a cake in my kitchen so that my kids could enjoy the results.

Birthday presents & wrapping.

Okay, this is something everyone does for party prep, but my son and daughter love choosing gifts for their friends.  We talk about what they might enjoy, we plan within a budget, and they help me in the whole wrapping process.  I was even tweeting a picture of the great drawing E did on her present for one of her school chum’s gifts.

Cupcake in Crayon on Kraft Paper

Cupcake in Crayon on Kraft Paper

Feed the kids before the party.

This is a major safeguard – fed children are less cranky and even armed with snacks or similar food to the party food if it isn’t going to be safe for them, if they’ve already eaten they are more amenable to hearing “no” if there is something they can’t have.  I was feeling pretty much like super mom Sunday as I watched R gleefully eat salad with his lunch (I’ve never seen a child enjoy lettuce the way he does) and E eat her mashed potatoes and corn.

Off we go….

Decorated cupcakes and gifts in hand, fed and happy children, and out the door in time for the party (per google maps and google calendar, that is). . .check!  Or, so I thought.  We arrived to a pristine and empty play structure at the park.  My first thought was that I got the address wrong, so I pulled up the invitation on my phone (I scan them in when they arrive) and my heart sank.  The address was correct but the time most certainly was not.  You see, my phone has this glitch sometimes where I put a time in and it adjusts it for eastern time, then I correct the setting to pacific but instead of adjusting the time back again, it leaves it alone.  Which is how 11am became 2pm on my calendar and the party had wrapped up at 1:30pm.

So why blog about one of the more mortifying parental mistakes I’ve made?  About as mortifying as wearing skirts around a toddler that likes to play peekaboo with strangers from behind said skirt?  Well, we were able to turn the day around and I was able to find a lesson for myself in the whole thing.

Sometimes it is refreshing to make “regular” mistakes.

I had never really reviewed all my steps in birthday party preparedness until yesterday.  When I did, I realized that showing up to the right place at the right time needs to be on the list,  I had to further realize that I need to back off a bit on the food allergy front, stop being so crazy busy with work and what have you that I rely on my digital calendar as much as I do, and get the basics right first.

The best part?

When I messaged one of the moms to apologize for being a no-show (I am not the sort to no-show!), she was incredibly gracious and was okay with us dropping our gift off at their nearby home.  My kids were most disappointed that their friends might think they forgot about them that they shook off the whole missing the park aspect and railed against my calendar instead of me.  Which was pretty nice of them, I’ll admit, though I take full responsibility for my distraction (and late night calendaring).

Not only did we get to drop the gift off, we were invited in for an impromptu playdate – they simply understood that these things happen and wanted to make sure the kids got to have some fun.  We called the other mom (it was a joint birthday party because the boys had birthdays close to one another) and offered to drop off our gift.  She was having friends over that hadn’t been able to make the morning party and invited us in as well.  My kids were over the moon to discover that the grandmother of E’s classmate had even saved some of the safe candy from earlier in the day.

Candy!

Candy!

This post is my thank you to M and K, the moms of K and L, for being such great sports and turning my birthday party mistake around.  I swear I am not one for inviting myself to people’s homes (at the last minute, on a Sunday) but they were both so awesome and chill about the whole thing.  It really does take a village.

And a more punctual mama.

UPDATE: Suit Filed against Amtrak re: Unaccompanied Minor Policy’s Exclusion of Food Allergic Youth

What follows is a press release from Stein Vargas – I am so very privileged to be able to share this with all of you!  You can make a difference!  (See my prior post for more: Amtrak’s Unaccompanied Minor Policy Explicitly Excludes Food Allergic Youth and download the press release here).

Press Release

Press Release

PRESS RELEASE – 10/16/14

CONTACT: Mary Vargas, Stein & Vargas, LLP | 240-793-3185 | Mary.Vargas@steinvargas.com

Washington, D.C. – Noah Joseph, a Michigan teenager seeking the opportunity to visit his grandmother by train, filed suit today in the United States District Court for the District of Columbia against the National Railroad Passenger Corporation (“Amtrak”). In his Complaint, Joseph alleges that Amtrak’s policy prohibiting teens with food allergies from train travel discriminates on the basis of disability in violation of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

Joseph, who carries an epinephrine auto injector for his allergy, had been scheduled to travel by train with his older brother from Kalamazoo, Michigan to visit his grandmother in Dearborn, Michigan during his summer break in August of 2014. However, when Joseph’s mother attempted to make reservations, Amtrak refused to book travel for Joseph because of his food allergy regardless of his ability to travel safely.

The Americans with Disabilities Act specifically prohibits Amtrak from categorically excluding individuals with disabilities. Likewise, Section 504 prohibits recipients of federal financial assistance, like Amtrak, from refusing service on the basis of disability. While Amtrak allows teenagers without food allergies to travel by train, Amtrak’s policy of denying travel to teens with food allergies is stated explicitly on the company’s website at www.amtrak.com/unaccompanied-minors-policy.

Joseph hopes that in filing suit he will encourage other teens with disabilities to stand up for their rights and that he will win the right to travel by train to visit his grandmother.

Joseph is represented by Stein & Vargas, LLP. For more information, please contact Mary Vargas at Mary.Vargas@steinvargas.com or at (240)793-3185.

Stein & Vargas, LLP is a civil rights firm committed to the principle that all people have full and equal access to all parts of society.

The Little Red Hen

There’s a folk tale called “The Little Red Hen” (Project Gutenberg link) and it generally goes step by step in the process of a little hen growing wheat, harvesting it, making flour, and baking bread.  At each stage she asks other animals for help and they are always too busy or not interested, I can’t remember which.  Finally it comes time to eat the fruits (well, bread) of her labor.  The other creatures are keen on taking part only to be told that our protagonist is not going to share her bread because no one helped her at each stage of preparation.

I told my son the story last night – he was keen on baking sugar pumpkins so I asked for his help taking out the seeds and pulp from inside.  The “pumpkin guts” weren’t appealing and my story ensued.  He, by then helping me scrape out the pumpkins, frowned and asked, “can you tell me a happy story about the little red hen where she shares with her friends?”

Baked Sugar Pumpkins

Photo: Our baked pumpkins

Anyway, I’m not going anywhere in particular with this, it just made me contemplative.

Thank you

Image by Mary Fran Wiley
Image by Mary Fran Wiley

I wanted to write and thank publicly all of those who contributed time, energy, and passion to the Food Allergy Bloggers Conference this past weekend.  The gratitude I feel is intense and humbling.  I hugged so many people so many times I am guessing it will come as a surprise that I am an introvert by nature but without going into detail about my life so far, to have friends is something that never stops feeling surreal.

FABlogCon Stage

FABlogCon Stage

I sat yesterday in a meeting in the catering department with Rich Niederman, Jenny Sprague, and Maureen Robinson.  Rich and Maureen are part of the stellar South Point Hotel team that believe in our event.  They are old Vegas in the best possible way, classy and professional but with a sense of humor.  Rich spoke to us about how wonderful all our attendees were, how sitting with them was like sitting with a mom in a pick up line at school or talking to a fellow parent at a PTA meeting.  No pretense, no games, just good people.

Dr. Stukus addresses a panel audience

Dr. Stukus addresses a panel audience

I feel so proud.  Proud of all of you and this generation of the food allergy community.  One that collaborates and builds people up.  I told Maureen and Rich the story of Ritesh Patel’s allergy bracelet (also check out his videos from the event!).  How the idea came at last year’s conference and he made it a reality.  How the product would save lives.  How this gem of a human being was connecting people at the event and even talking about collaborating with sites like Freedible and Online Allergies with his product.  He wasn’t just creating something to sell to the food allergy community, he was lifting all boats with the rising tide of innovation.

Chef Jamie and Chef Darren made our wonderful food

Chef Jamie and Chef Darren made our wonderful food

Rich also mentioned that he used all of your blogs and the resources out there online to understand food allergies and serving those that deal with them.  The words you write make a difference!  Information is our best antidote to fear.  Chef Jamie Poltrock and Chef Darren Walters made the wonderful recipes used this year and, combined with Chef Keith Norman’s food safety training, the whole staff at the South Point were great at accommodating special diets.

Chef Chris Johns

Chef Chris Johns

Thank you also to Chef Chris Johns, I think the whole cupcake decorating breakout session was surprised when he stopped in to do some frosting piping!

Jenny Sprague and Lynda Mitchell

Jenny Sprague and Lynda Mitchell (photo by Isaac Easley)

Thank you to Jenny for allowing me to be a part of your vision two years in a row.  The universe may have made us food allergy moms, but I am so glad to call you my friend.

Image by Mary Fran Wiley

Image by Mary Fran Wiley

Special thanks to volunteers who included Barbra Konrad, Rebecca Sherrow, Imelda Patag, Jodi Bourquin, Sonja Braunlich, Kim Pebley and family, Laura Arango, Assly Sayyar, Ivette Reyes, Alyssa Morrisey, Vigil Beth Rapiz, Elyse Hahne, Minhja Nguyen, Alison Johnson and Selena Bluntzer.  Each and every one of these individuals went above and beyond when they had many other things in their lives demanding their time and attention.  Erin Collins came to my house the week before the event and loaned me so many of her dresses, I may have to find more events to go to just to take them each for a spin before I get them back to her.

Swag bag stuffing

Swag bag stuffing

Thank you to Sarah Chapman and Brynn Hadler – Sarah and her husband attended all the way from England and Brynn flew in from her home in Australia.  Knowing this was a worthwhile event for you means a lot.  Sarah remarked that hearing Dr. Li speak about her research in food allergy was “like Harry Potter” because it may as well be magic for the hope it gives.  I’m with you, Sarah!

Cheryl Viirand, Joel Warady, and me

Cheryl Viirand, Joel Warady, and me

Getting to thank people like Joel Warady of Enjoy Life, Lynda Mitchell of KFA, and Dave Bloom of Snack Safely for their continued commitments to food allergy, to shake their hands and let them know what the work they do means is such a treat.

Jenny Sprague and Elisa Camahort

Jenny Sprague and Elisa Camahort

Meeting Elisa Camahort and Robyn O’Brien gave me “pinch me” moments where I might as well have been dreaming.  Same with meeting fantastic attorney advocate Mary Vargas and seeing Laurel Francoeur for a second year.  You ladies are making such an impact!

Linda Coss and Robyn O'Brien

Linda Coss and Robyn O’Brien (photo by Isaac Easley)

Jerome Bettis’ speech about how celebrity offers him the platform to help others rang so genuine and true.  I helped people take pictures with Mr. Bettis with their cell phones (we have photos from our awesome photographer Issac Easley coming in two weeks!) and he smiled warmly to every single person he met, it was a treat to see.

Jerome Bettis and Ritesh Patel

Jerome Bettis and Ritesh Patel

I want to mention everyone here but I would literally be mentioning everyone but suffice to say, if there was ever a reason to stick around on this world besides my family, it would be all of you.  I can’t wait to see what you achieve and the positive light you each continue to bring with you.  (Annelies, I can’t wait for your book about cooking with tea!)

My fellow legal panelists, my sister Assly Sayyar and my dear friend William Devine were a treat to work with – thank you!

My children – you are such troopers, I have to apologize for being so busy this year with the opening of my firm in January and the build up to the conference all year.  Mommy will try to put the phone and laptop away when we play together, I promise.

Thank you note to me from E

Thank you note to me from E

My husband – thank you for your help and especially for giving me that much needed push to go to dinner Sunday night after we finished packing up the cars with conference materials.  I needed to remember what it was like to turn off conference mode after a long year and just be.

By the Bellagio fountains

By the Bellagio fountains

I had so many meaningful conversations with so many people (Tricia Gavankar, Sharon Wong, Cybele Pascal, Erica Dermer, Mary Fran Wiley, Henry Ehrlich, Drew Aveling, Jessica Martin, Colette Martin, the list goes on!) and hope the dialogue keeps going with all of you.

Opening night panorama

Opening night panorama

Thank you, thank you, thank you!    

When a School Tries to Split Up Epinephrine Auto Injectors

Source:  http://portal.nasn.org/media/SavingLivesatSchool_Handbook.pdf
Source: http://portal.nasn.org/media/SavingLivesatSchool_Handbook.pdf

Have you ever been in a situation where something comes out of nowhere and you are too surprised to react?  A parent recently shared an experience that had all of us in a private Facebook group for parents of children with food allergies up in arms.  I asked if I could share it here on their behalf to prepare others for questions that would otherwise catch them off guard.

To set the scene, imagine you are at your school’s “meet the teacher” night and dropping off medication, paperwork, and of course epinephrine auto-injectors:

“[They] promptly took out the [EpiPens] and split the two pack and handed one back to me. I kind of had a mini-meltdown [...] I said what are you doing? You’re not supposed to split a two-pack. She told me that was [District] policy. She then checked with the nurse who said she’d been doing this for 17 (?) years and that they don’t ever keep the second one because, according to [District] policy, only a nurse is allowed to administer the second dose and that a nurse will almost never be on campus. I was a little shocked and replied that I was told NEVER to split the two-pack. They told me they could keep the second one, if I insisted. They told me they had been splitting the two-packs all morning and I was the only one who said something. [...] This was new to me as last year they took the two-pack, no problem.”

The parent here, let’s call them Pat, is entirely correct.  Epinephrine auto-injectors come in packs of two for very specific reasons.  In researching for this post, I stumbled upon a 2008 post from “Our Story: The Good, the Bad, and the Food Allergies” by Janeen Zumerling where she discussed being faced with a pharmacy trying to fill one prescription for a 2 pack of EpiPens instead of more because they figured two pens came in one box.  So while this is the first time I’ve heard personally about this happening, it could happen at school, at the pharmacy, or elsewhere.

Suggestions as to How to Respond

(The following come with the overall caution to remain respectful, polite, and evidence based in your appeals to the decision maker in question – it may also not be a good idea to have these discussions in front of your child, depending on their age, if they are present when the attempt to split injectors occurs):

1) “This is how my doctor prescribed it.”

Sometimes people will back off if you tell them the instruction comes from someone other than yourself, like an allergist or physician.  My daughter’s allergist writes her prescription for a “two pack” – does yours?  In the story above, Pat was told that the school nurse had been doing it this way for years and that no one else had complained, so this response may not work.

2) Stock Epinephrine Laws

If your state has a stock epinephrine bill, as Nevada does, you can point to the bill’s language.  Nevada specifically references “two doses” of injectable epinephrine.  NRS 388.424 (I’m so used to calling it Senate Bill 453, I had to look up the final Nevada Revised Statutes citation, it makes me happy to see it nestled in the law on the legislature’s website!) reads (in part) as follows:

Each public school, including, without limitation, each charter school, shall obtain an order from a physician or osteopathic physician for auto-injectable epinephrine pursuant to NRS 630.374 or 633.707 and acquire at least two doses of the medication to be maintained at the school. If a dose of auto-injectable epinephrine maintained by the public school is used or expires, the public school shall ensure that at least two doses of the medication are available at the school and obtain additional doses to replace the used or expired doses if necessary. 

(emphasis added).

3) Clarify – EpiPen and Auvi-Q versus Twinject

If your injector is the Auvi-Q or EpiPen, that the Twinject is the only injector where the first dose of epinephrine is an autoinjector and the second is a traditional injection that might cause the concern regarding a nurse administering it.  (Source)  Even so, the doses should be kept together.

4) Look into self-carrying

If your child is responsible, they may be able to carry both doses on their person instead of having to wrangle a school when it comes to attempts to split doses.

5) Turn to your 504 Plan (or IEP)

Depending on the makeup of your school (public schools fall under this, for example, it is dependent largely on the receipt of federal money), you may qualify for a “504 Plan” for your student.  (Source, I discussed school accommodations in my overview of the Fox Chapel case FARE amicus brief as well.)  This is a shorthand reference to the accommodation to which you are entitled for your student.  Don’t have one?  Request a meeting.  Even if the person trying to split your injectors is a novice on the food allergy front, they should know what a 504 plan is (stay tuned for a post on what to do when you get blank stares after mentioning it, as happened to a friend of mine recently).  Does your plan reference both doses?  The plan we have for my daughter references a second dose after 10 minutes if emergency services have not yet arrived.  Some schools may not permit a 504 plan where an IEP (Individualized Education Plan) is in place to cover other accommodations, so your allergy procedures should be contained in that document instead.

6)  Go higher up

You can speak to someone in the school district that may be more informed than the individual you’re dealing with.  If the person you’re facing is a school nurse, use data from the National Association of School Nurses.  They have a great guide about anaphylaxis here (aptly titled “Saving Lives at School“) and I’ve isolated the page about two doses of epinephrine below (click the image for a larger version).

Second Dose of Epinephrine Referenced in School Nurse Guidelines

Second Dose of Epinephrine Referenced in School Nurse Guidelines

7) Research Response Times

This may take some google searching on your part but some areas may have response times for emergency services (ie, 9-1-1) that exceed 5-10 minutes.  If you’ve ever been in a traffic jam near your child’s school, you probably won’t be surprised when you do find the stats you need.  You’ll see that this is even more important when you see my notes on biphasic reactions below.

8) Know Some of the Reasons Why Epinephrine Autoinjectors Come With Two Doses

Not only could the first injector malfunction, there may be user error (or inexperience) at play in addition to the risk of biphasic (subsequent) reactions from the same exposure or the epinephrine wearing off before help can arrive.  I’ve broken this final suggestion down with supporting information I was able to find – sometimes just knowing why a protocol is in place will help you if someone down the line challenges you.

Background Research

Here is some additional information (background research that I did) that could come in handy if someone tries to force split your two pack of injectors:

A second Dose of epinephrine is required For At Least 1 in 10 patients

While the percentages vary, a second dose is required for 10%-35% of patients experiencing an allergic emergency to deal with the symptoms of the reaction.  (EpiPen says 20%, Auvi-Q says 10%-20%, and Twinject says 35%)  Remember, of course, I am not a physician and none of this is a substitute for medical advice.  I just want to arm people with information that they could use if they find themselves in Pat’s shoes.  A study spanning 2001-2006 records for two hospitals in Boston found that 12% of children required two doses of epinephrine as opposed to one per Susan Rudders, MD, of Children’s Hospital Boston. (Source:  “Kids With Food Allergies May Need 2 EpiPens” – WebMD Health News, March 26, 2010)  The article goes on to quote Dr. Rudders as saying, “The problem is, we really don’t have good ways of identifying who will and will not need an extra dose.”

The effects of one dose of epinephrine may wear off after 10-20 minutes

Epinephrine suppresses the progression of a reaction. (Source)  It may wear off after 10-20 minutes, however, which may not be enough time for emergency help to have arrived.  (Source)  Remember, use epinephrine by injecting it into the outer thigh, call 911, also remembering to keep the patient lying down with their feet elevated and be prepared to use that second dose.

User Error And Device Malfunction

 Not that anyone wants to consider making a mistake when the situation calls for epinephrine, but in a high stress situation the person using the product may not know how or may make a mistake.  I found an interesting article from 2010 that compared four injectors (it was funded by the makers of the Intelliject, later called the Allerject in Canada or Auvi-Q in the United States) entitled: “A comparison of 4 epinephrine autoinjector delivery systems: usability and patient preference” from the Annals of Allergy, Asthma & Immunology (by Stephanie Guerlain, PhDemail, Akilah Hugine, MS, Lu Wang, MS, in Volume 104, Issue 2, Pages 172–177, February 2010 – the manuscript version is here).

The manuscript mentions that when a device malfunctioned, the likelihood of failing to follow instructions was higher.  What I was searching for were stats on malfunction but the reference here admits it is a possibility in a test setting at least:  “Studies have shown that patients and caregivers do not always correctly administer epinephrine autoinjector devices. [...] There may also be a large time lapse (several years) between when a person is trained on an autoinjector and when it must be used during an allergic reaction. Finally, a patient or care provider may be under significant stress while attempting to provide the potentially life-saving dose of epinephrine when it is used.”  Id.

As an aside, I was surprised that the most common error for use of an epinephrine injector was not holding it for the correct amount of time.  In the study I looked at,  versions of what would become the Auvi-Q (INT02 and INT01 in the study)  were used as well as the EpiPen and the TwinJect.  “The INT02 device resulted in participants committing this [(not holding long enough)] error 11 times compared with 27 (INT01), 40 (EpiPen), and 42 (TwinJect) times.”  Training across devices was held to be crucial, with the manuscript indicating that “[t]he fact that less than 50% of participants across all devices could follow the labeled instructions without committing a single error provides confirmation that the need for training on the use of epinephrine autoinjectors is still important.”

I didn’t mean to get sidetracked but I found it interesting.  At any rate, someone administering the medicine could not hold it long enough, the device itself could malfunction, the person may not be adequately trained, or the stress of the situation could cause errors as well.  With these things in mind, a second device is a very important thing to have.

Biphasic Reactions

The first time I heard of biphasic reactions I was fairly shaken.  It isn’t enough to worry about accidental exposure to an allergen without now thinking that you could have the reaction, be stabilized, only to have it return like an aftershock even hours later.  A biphasic reaction is defined as “a worsening of symptoms requiring new therapy after resolution of anaphylaxis.”  (Source)

Final Notes

I hope some or all of the above is useful!  I also hope you don’t run into push back when you work with your school.  Pat was able to get the school to retain both EpiPens and I really appreciate the talking point the story provided (thank you!).

As I stated in my post regarding EpiPen and Auvi-Q expiration dates (people are reporting in the comments that they’re receiving their $400 Auvi-Q savings cards in the mail in about 2 weeks after reporting short dated injectors, check out Amazing & Atopic and Food Allergy Pharmacist for even more if you’re following the issue), I have connections at both Mylan and Sanofi (I am the co-founder of the Food Allergy Bloggers Conference and they are both sponsors and my travel, hotel, and some food was covered for my attendance at the Mylan Summit earlier this year) – see my disclosures page as always for more.

The opinions herein are my own, do not constitute legal advice or medical advice, and are provided merely as discussion points.  I am an attorney and parent of a child with food allergies living in Southern Nevada.