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. 

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)

IMG_2258

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.