Food Allergies and Travel in Recent News

 

Air Travel

A news story recently made the rounds about a young girl who experienced her first ever anaphylactic reaction, after previously having no allergies, on an airplane bound from Ireland to the United States. (Source: “Crew use Epi-Pen to save girl on plane” – Irish Independent, August 5, 2014)  People in the food allergy community were thrilled that (1) the girl was saved by quick action (remember: epinephrine is the priority in an allergic emergency, NOT antihistamines) and (2) perhaps the story would bring awareness and compassion from the general public regarding nuts and travel.

That was in early August and this morning I saw this article: “Family of nut allergy girl are removed from flight” – Irish Independent, August 20, 2014.  I’m going to sidestep the European press’ penchant for calling someone a “nut allergy girl” as I’ve mentioned before that I agreed with Marketing Mama that “girl with nut allergies” is more appropriate.

Here’s the basic timeline:

On or around August 5, 2014 – Diagnosis of food allergy via first anaphylactic reaction

On or around August 20, 2014 – Removal from flight home due to request that nuts not be served

From the article:

The family had been able to, it seems, make it to the United States for their holiday after the initial flight had been turned around owing to their daughter’s anaphylaxis and were trying to return home to Dublin this week:

 On the return flight back to Dublin after their holiday, the family again asked the airline not to serve nuts, the child’s mother explained.

“But that seemed to be a big issue because this was part of the United service and they said they didn’t advertise themselves as a ‘nut-free airline’,” she said.

“We were only going to discommode 10 other people because we were all in first class. They asked the other people but then a simple request seemed to turn into a big production. “

The couple and their child were then asked to get off the flight and were accommodated in a hotel for the night while the child’s aunt and grandparents travelled home.

The couple flew home the following morning after the airline agreed not to serve any nuts.

(Source)

The article indicates United doesn’t serve nuts but that they can’t make guarantees about the conduct of other passengers or make assurances about whether food served “may contain” nut products.  I know families living with food allergy will see what is wrong with this picture but I am seeing more and more the default response from the general public that would exclude the person with the allergy instead of the thing that puts them at risk.  Of course no one can guarantee anything, even families dealing with food allergies are the ones that make missteps sometimes, after all.

This latest story comes at the heels of one about a four year old girl that has a documented nut allergy and experienced anaphylaxis.  Purportedly a warning had been issued on a plane about not consuming nut products during the flight.  (Source)  I can’t find much to back up some of the hyperbolic reports about what happened – for example some have said that the passenger did not understand English fully and was not maliciously consuming nuts after being warned not to do so on RyanAir.  Stories seem to corroborate that anaphylaxis occurred and that the passenger eating the nuts was banned from the airline for two years.

I get the liability jargon people bandy about, I’m a lawyer.  In the same way “free speech” is misunderstood, we have to get some things straight about liability and discrimination and what it means when common carriers (entities that transport people) discriminate.  I’m also a “food allergy mom.”  While I am grateful that my child’s main defense (besides epinephrine, of course) is avoiding her allergens, I am saddened that a child that is barely a month into life as someone with food allergies would have to be subjected to discrimination.  When I wrote about Amtrak’s unaccompanied minor policy, many did say they could see why Amtrak wouldn’t want to deal with allergies, or that they don’t have the staff for an emergency.

Certainly a plane over the Atlantic is not the place to have a reaction, but the family in this story’s experiences match what I hear from people in my local food allergy parent group and online at large.  Sometimes they call ahead, sometimes they don’t, sometimes the note that indicates a pre-boarded passenger has a food allergy reaches one attendant and not the other, sometimes a family that scrambles to get the morning flight home because planes are more likely to be clean at that point finds a cashew on the floor in front of them… the list goes on.  And while we’re at it, how cool would it be to have stock epinephrine on airplanes and trains?  But I digress…

Our first and only air travel with our daughter was already planned when we got her allergy diagnosis and mere days after we met our first attempted allergist (finally found one that worked with us as a team years later on our third try).  We had her carseat on the plane and it was a quick trip to Monterrey, California to see my brother out at the Defense Language Institute.  I remember carrying her epinephrine and her epinephrine prescription to show security just in case there were issues but I didn’t know anything about how to handle other aspects of the trip.  We made it fine both ways but I know exactly how in a daze the family in the news story must feel.

Henry Ehrlich wrote a post recently about food in doctor’s office waiting rooms.  Granted, doctor’s office waits can be as long as an airplane trip, but it brings home that we are a society that is constantly eating.  I know there are medical conditions that require people to maintain their blood sugar and I’m not advocating going food free when people travel, but I wonder to myself how we need to frame this discussion.  What are we, as a community, asking for?  For every person that would love to see a general airline nut ban, there’s another within our own community that copes with a severe milk or other allergy that would like to be able to travel further than a car ride away.

My parenting style has evolved to the conclusion that we can’t adapt to situations if we don’t employ critical thinking instead of hard line rules.  “Never cross the street alone” doesn’t help a child in a situation where maybe crossing the street alone is the safest option.  Teaching them to watch out for cars, to understand what a car’s lights look like when it is backing up and to understand that the driver simply may not see them prepares them for situations we can’t anticipate.  The same goes for an airline defaulting to making no promises about the safety of passengers as they relate to allergens such as nuts.  How do we equip a gate agent, or other decision maker, with the tools that will make them feel empowered instead of fearful of a family traveling with food allergies?  Like many questions I am apt to ask, I don’t have an answer, but this is what I do know:

1) Allergies are on the rise and are here to stay.

2) People have a right to travel, go to school, and more even though they have life-threatening allergies.

There is a lot of violence as well as hardship in the world and I have lots of opinions about a lot of things, so please don’t view this discussion as diminishing the struggles of people at home and abroad against violence and prejudice.  Yes, in the grand scheme is it terrible that I can’t just buy a plane ticket on the cheapest airline and take my family on a trip but there are plenty of reasons people travel that aren’t for a holiday, that might be for an emergency, and if we think about these issues before those emergencies arise, we’ll be better prepared to be the most inclusive society we can be.

More Graphics for Food Allergy Bloggers Conference 2014

50 Days until FABlogCon!
50 Days until FABlogCon!

It has been a month since I shared some of the graphics I put together to promote aspects of the Food Allergy Bloggers Conference and I have come up with some more I thought I’d collect here.  I hope they are helping people to see the value of what we’ll have at #FABlogCon.

In addition to the graphics, we recently shared a video from last year’s conference that may be useful if you are preparing for back to school – Dr. Mike Pistiner and Lynda Mitchell spoke about allergies and education in their presentation viewable here.

With contributions from friends and family I wrote out some ideas of things to do and see in Las Vegas as well!

Four Stages of a Food Allergy Mom

Four Stages of a Food Allergy Mom

Do you have a favorite graphic?

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As always, feel free to contact me with questions if you are considering attending as I’m a co-founder and co-organizer of the conference (FABlogCon.com) along with Jenny Sprague of Multiple Food Allergy Help).  We are offering single day tickets to Las Vegas locals in case that is an option that works better for you.  You can follow the conference on Twitter or Facebook (or both!) to see new graphics as they come out.  Register to attend today and remember this is not just a blogger event!  See the schedule here for more information.

The Allergy-Free Pantry (Review and Giveaway)

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One of my favorite people has a new cookbook coming out early next month and I was able to snag an advance copy!  That means the page number references are missing and certain aspects may change by the time the book goes to print but even in that form I can tell you “The Allergy-Free Pantry” by Colette Martin (amazon affiliate link), to-be-released September 9, 2014, is everything the tagline promises:

Make your own staples, snacks, and more without wheat, gluten, dairy, eggs, soy, or nuts.

Advance Review Copy

ARC could mean “Advance Review Copy” or “Already Really Creased”

I’ve baked from Colette’s prior book, “Learning to Bake Allergen-Free,” (amazon affiliate link) so I was excited to choose a recipe out of this book that leaned to the “staple” side of things.  My kids would have rather I made the toaster pastries (I may yet still!)   and I eyed the potato puffs with interest but our decision was made by recently listening to the audiobook of “Little House in the Big Woods.” (amazon affiliate link)

My daughter was fascinated by the stories of pioneer life, especially the detailed descriptions of chores like churning butter.  We’ve even watched some videos online of old fashioned butter making so Colette’s “Homemade Buttery Spread” was just the ticket.  This is dairy free and even corn free.  I remember when my daughter still would react to corn (she’s grown out of that allergy) it was hard to find corn free options of staples.  This includes as ingredients: coconut oil, grapeseed oil, canola oil, flax, water, lemon juice, and salt.   Oh, and in honor of Colette doing all her own photos, I tried to use some manual settings for these pictures!

Ingredients for Colette's Homemade Buttery Spread

Ingredients for Colette’s Homemade Buttery Spread

Colette explains everything – she even discusses at length on the subject of “flax eggs” how you can replace the flax for those that are allergic (chia seeds may be an option).  Her tips on creating a permanent emulsion were especially helpful for this recipe and are applicable to dressings and her homemade mayo recipe as well.  Thank you to my mother in law for slowly drizzling the oil in while I tried to get a good shot.

Emulsion in progress

Emulsion in progress

I used our Vitamix to blend this up but a food processor or immersion blender are listed as possibilities as well – I just wanted to work in that we’re giving a Vitamix blender away this year to one lucky attendee at the Food Allergy Bloggers Conference (where Colette will also be speaking as well as signing books!).

Heart shaped molds for vegan coconut buttery spread - 1 tablespoon apiece

Heart shaped molds for vegan coconut buttery spread – 1 tablespoon apiece

Just like Ma in “Little House in the Big Woods” (amazon affiliate link), we used molds for our buttery spread.  (Milk is now safe for us but my daughter prefers vegetable spreads for toast since she is used to them.)

I love the little flecks of flax and the coconut oil smells wonderful.  My mother in law remarked, “It’s perfect!  Not that I doubted it for a minute anyway.”  My daughter loved the finished spread, as did I.  My son was not in a taste testing mood.  The flavor does come through strongly but you can always substitute other oils as discussed in the book.  I won’t share the recipe here but I hope you’ll check out the book!  Amy Tracy at Adventures of an Allergic Foodie does have her own review as well as Colette’s homemade mayo recipe on her blog if you’d like to check it out.

Out of the molds

Out of the molds

Colette advises that you may be able to substitute this for shortening when chilled for pie crusts or cookies but doesn’t recommend using it for frosting or syrups.  The book is filled with tips and many were new to me even though I have been baking and cooking allergy friendly for over 4 years now.  At one point she mentions, for example:

I don’t recommend paper liners when baking with gluten-free grains, as they have a tendency to hold in moisture.  Instead, bake directly in the muffin pan and add the paper cups, if desired, after cooling.

Giveaway!

I am not only, courtesy of Colette’s publisher, giving away 1 copy of “The Allergy-Free Pantry” but I will also include, purchased from the affiliate link proceeds of this blog (see my disclosures), one USD $20 Amazon.com gift card to spend as you like!  I hope you’ll take Colette’s suggestion in the book to buy a scale to weigh out your flours but then I thought readers might already have one.

How to Enter:

Leave a comment letting me know something you make from scratch in your home – open to entries until August 13, 2014 at 12 p.m. Pacific Time.

I’ll assign numbers to each comment to represent their order and use a random number generator to pick the winner.  This giveaway is void where prohibited and open to residents of the United States and Canada.  I’ll need you to include your e-mail address  (it will not be shared or used for any other purpose) so I can reach you if you win.  Any winner that doesn’t respond within 24 hours of contact forfeits the prize and I’ll choose another winner.

Thank you and good luck!

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Elsewhere: If you follow my vegetarian and vegan friendly reviews at vegbooks.org, I have a few new ones to check out!  Julia’s House for Lost Creatures (I adored this one),  Sleep Tight, Anna Banana, I Love You Just Enough, The Zoo Box, The Girl and the Bicycle, and Peep and the Big Wide World

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UPDATE 8/14/14 – Our winner is comment 11 from Mary!  Thank you all for your comments – Mary, your book and gift card will be on their way soon!

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Amtrak’s Unaccompanied Minor Policy Explicitly Excludes Food Allergic Youth

If you think I talk about Food Allergies all the time here, imagine how my friends feel!  A friend from law school, Ali, wrote to me that though her daughter doesn’t deal with food allergies, she saw this policy on Amtrak’s website and was disturbed that a food allergic minor would not be permitted to ride Amtrak alone while one without food allergies might be allowed to do so.

Their site simply states:

The unaccompanied child may not have any life-threatening food allergies.

I have written to Amtrak to inquire about this policy but have not yet received a response.  If I do, I will be sure to update this post.  The full policy, with the allergy reference highlighted, is below:

If I were to speculate, there’s a lot implied here.  My mind first goes to the thought that food allergic children have to be more responsible and aware versus non-allergic children (source).  On the other hand, the teen years are notorious for risk taking behavior (source).  I am not sure that Amtrak is weighing either of these considerations in their policy, however.  They could simply want to delegate responsibility for a minor with food allergies to the individual accompanying them.  Or, to take it a step further, from reading their other statements regarding food service and nuts (source), they are taking the approach many of us have experienced where a restaurant or other location just turns a food allergic individual away without attempting basic accommodation.  As I stated, though, this is speculation.  Their automated system kept kicking me back to their dining policy and customer service e-mail has gone unnoticed thus far.

Most of all, I was not sure how to respond to my friend.  She thought it was outrageous to have such a restriction.  Here in Las Vegas we don’t really have this sort of transportation – is it common for a teen to ride a train unaccompanied in the United States?  Does Amtrak require disclosure of allergies upon ticket purchase?  To buy an unaccompanied minor ticket it seems that one has to call in and not use the online system at the outset.  To interview a child at the station to determine the ability to ride alone (included in the above policy) but exclude from that determination whether they could adequately manage their own food allergies for the duration of travel seems to attach a strict liability concern for Amtrak.  That is to say, is the act of a teen with food allergies traveling alone patently risky to the point where Amtrak cannot allow it – or such that they would point to the policy as a defense if something did happen to a teen with food allergies traveling alone?  And what of allergies that present for the first time without prior warning?  There is a push in many states already to move stock epinephrine beyond schools and onto public transportation and in restaurants (read more about Nevada’s efforts here).

The American’s With Disabilities Act (ADA for short) of 1990 established that “[n]o individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation.” 42 U.S.C. § 12182(a) (2000).  A disability under the ADA “means, with respect to an individual– a physical or mental impairment that substantially limits one or more of the major life activities of such individual.” 42 U.S.C. § 12102(2).  Arguably, food allergies, though something that can be mitigated through avoidance, impact the major life activity of eating and are covered by the ADA.  Here, I’m sure the response by Amtrak would be that the person wanting to travel could do so, albeit accompanied.  They’d try to look at the age restriction as the reason for a limitation and not at an outright discrimination based on allergy.  It certainly bears more investigation/research into the current state of disability law in the United States.  And of course none of this is legal advice or anything, I’m just wondering if this is simply a policy that has gone unnoticed or unchallenged.  My area of practice as a Nevada attorney doesn’t run to this area of law, I deal largely with elder exploitation and guardianship day-to-day, but my interest is definitely piqued by issues such as these.  (See also: my post about labeling)

My knee-jerk reaction would be that if, say, a 14 year old meets all other requirements Amtrak has for unaccompanied travel and also happens to have food allergies, I can’t see why they should not be allowed to travel alone.   What are your thoughts?  Does this strike you as a discriminatory policy?  Is this a policy that protects the potential unaccompanied youth with food allergies or does the protection run to Amtrak alone?  At what age would you be comfortable with your child, food allergic or not, traveling alone?

UPDATE – Epi-Pen and Auvi-Q Expiration Dates

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I wrote to both Mylan (EpiPen) and Sanofi (Auvi-Q) and shared my previous post “Epi-Pen and Auvi-Q Expiration Date Frustrations” along with the wonderful and informative comments I received from readers and received the following responses I wanted to share here.  Please, depending on which product you purchased with an expiration date that was unsatisfactory, read below (for Auvi-Q purchasers, you may be able to get a savings card that offers an up to $400 benefit and for EpiPen purchasers, be sure to call customer service).  Both companies understand that expiration dates are very valid concerns for purchasers of epinephrine auto-injectors.

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Child doses of Auvi-Q and EpiPen

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Epi-Pen

From makers of the EpiPen, Mylan Specialty:

To help facilitate consumers providing us with the necessary information, please share our customer service contact information. Consumers can call Mylan Customer Relations to speak with a representative at 1-800-395-3376 or email at Customer.Service@mylan.com.

We also wanted to provide additional information related to product expiration dates to support you and your readers.

When picking up epinephrine auto-injector prescriptions, we encourage patients or caregivers to check what is dispensed at the pharmacy prior to leaving. If there are concerns about the expiration date, they should speak to the pharmacist immediately.

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Auvi-Q

From makers of the Auvi-Q, Sanofi:

Patients or caregivers who, within the last 31 days, purchased an Auvi-Q that expires in less than 12 months are eligible to receive a savings card with a maximum benefit of $400 off one two-pack of Auvi-Q for each Auvi-Q purchase that meets the terms and conditions. Savings cards are valid for useJanuary 1 – June 30, 2015.  Patients or caregivers who purchased an Auvi-Q in the past 31 days with 6 months or less of dating may receive a replacement Auvi-Q or they can opt to receive a savings card.  For more information, including terms and conditions, patients or caregivers should call Sanofi Customer Service at 1-800-633-1610.

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Our collection of expired Epi-Pens and Auvi-Qs, the ones in the belt are current through early next year.

Our collection of expired Epi-Pens and Auvi-Qs, the ones in the belt are current through early next year.

In the meantime, it is my understanding that both companies are following issues about epinephrine expiration dates and are taking all consumer comments and concerns into consideration.  They want to hear about issues people may or may not be having as they get prescriptions filled.

No matter what hurdles you face in filling the prescription, by the way, you need to be carrying epinephrine.  See this great post by “Marketing Mama” Missy Berggren: Why do people need to carry EpiPens? Why not just call 911?

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Disclosure: I attended Mylan’s Summit in April but my opinions are my own – more detailed disclosure here and here.  Sanofi and Mylan have both been sponsors of the Food Allergy Bloggers Conference, of which I am a co-owner.  My opinions, as always, are my own and are not representative of my position at Food Allergy Bloggers Conference LLC or the real or perceived benefits from either company.  Representatives from both will be at the conference this September 2014.

Chocolate Sunbutter Fudge by EGW

EGW's "Allergy Friendly Snack Book" Cover

My daughter is hard at work at her own cookbook, or the “Allergy Friendly Snack Book” as she calls it.  I love seeing her practicing her writing as she gets ready to enter first grade next month (she turns 6 on the second day of school this year) and just owning the idea that she can write a book if she wants to.  This is her first recipe in her book, she calls it “Fudge Cobbler” because at the moment the word “cobbler” is her favorite new kitchen term (we made some actual Apple Cobbler the other day when I didn’t feel like wrestling with my usual broken pie crust) but also just refers to it as “fudge.”  Her recipe is pictured below, I’ve expanded a little more on her steps but even at age 5, heating the ingredients aside, there’s a lot for a kid to do hands-on with measuring, mixing, and pouring.

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She wrote this up in May so I’m behind in posting it but we’ve had a busy summer.

Supplies

Metal saucepan and metal bowl (or double boiler)

Small baking dish or pan lined with parchment paper

Spoon and 1/4 measuring cup

Ingredients 

1/4 cup Enjoy Life Chocolate Chips (top 8 allergen free)

1/4 cup Brown Rice Syrup (we use Lundberg brand)

1/4 cup SunButter (or other sunflower seed butter)

Vegan and Nut Free Fudge

Directions

Heat a saucepan (or double boiler) with water on high on your stovetop and place a metal bowl over the top of the saucepan and melt the chocolate chips (or chunks) over the heat.  Mix in sunflower seed butter and brown rice syrup once chocolate is melted until combined.  Pour the mixture into a pan lined with parchment and freeze (or refrigerate if you’re not in a hurry) until firm.  Slice into portions of your choice (pictured are small bite sizes).

I think these are chewier than a normal fudge because of the brown rice syrup – if you’re looking for that spot-on fudge texture, the wonderful Elizabeth DiBurro at EBL Food Allergies has an amazing fudge recipe that melts in your mouth (we don’t have a microwave and did fine with her recipe on the stove) but there’s probably room for both varieties in your kitchen.

And E, if you’re ever reading this down the line, know that  I’m so proud of you and love that what is often a challenge for me (cooking and baking) is something you approach with gusto and excitement.  Seeing you and your brother grow, learn, and embrace this life is one of the keenest joys I have ever known.

Disney’s “Frozen” Party Favor Idea

If you enjoyed my lightsaber valentine idea (glow sticks and Star Wars valentines), I have another idea that my daughter helped me come up with as we have been planning her “Frozen” themed 6th birthday.  When it worked so well she asked me to share it here.  Who knew the day would come when she’d say “can we post this on your blog, Mom?”  She is writing her own cookbook right now and you may even see some of those recipes in this space.

Frozen Bubble Favors

This doesn’t work with all cupcake rings, the plastic needs to be a little bit pliable, but it did work with the “Frozen” cupcake toppers we’d purchased on Amazon (amazon affiliate link or ebay search link) and these mini bubble bottles from Oriental Trading (search: hexagon bubble bottles and choose your favorite color).  Just work the ring over the top of the bubbles and there you go.  Easy peasy way to give a theme to the bubbles but also works as a food-free idea for party favors.

(For R’s 4th birthday we’re doing Chinese paper yo-yos and Power Rangers rings – his were too sturdy to work with bubble bottles.  I love August birthday planning!)