5 Minutes for Food Allergies

Disclaimer:  Individuals with food allergies, or any other suspected medical condition(s), should be under the care and advisement of a medical professional.  Always consult a physician before making any changes to your current health care regimen.

A week ago, I was reading about the heartbreaking passing of Shimmer James, age 6, due to an anaphylactic reaction to peanut.  I was overcome with a feeling of urgency and the feeling that I'm just not doing enough to get information out to the masses.  I immediately started writing a Facebook status update, pouring out all of the things I wanted to tell people, off the top of my head, about food allergies and anaphylaxis.  I initially paid to promote the post, in the hopes of reaching as many people as possible, but Facebook stopped "promoting it" after 130 views, because my graphic had "too much text".  Despite this, the information made its rounds thanks to the power of all of the other food allergy parents and kind souls out in the vastness of Facebook!  Thanks to all of you who have shared the post, it is up to 1,000 shares, with a reach of around 50,000 people!  You all are AMAZING!

Surely there are points that could be added, so if you would like to provide other important points, please comment on this post.  I am unable to edit my post, so perhaps people can refer back here for additional information/discussion.  My profuse thanks, again, for getting this information in front of the eyes of so many.

Here are some points I wanted to add:

• Epinephrine is prescribed and delivered in 2-packs, which should be viewed as a set, not to be split up between locations.    
• Epinephrine auto-injectors (EAIs) expenses can add up, especially when multiple sets are needed, but there are often discounts available, especially for cash-paying customers.  There are also patient assistance programs for those in need.  Never let cost get in the way of maintaining a supply of epinephrine.  Saving money by not buying at least one set of epinephrine is not something allergic people can afford.  People raise money for sports equipment, uniforms, band trips...Why not life-saving medication?      
• Epinephrine auto-injectors should be kept within their stated temperature ranges (see each manufacturer for specifics.)  They should not be left in glove compartments, or other places where they might get too hot/too cold.
• If at all possible, those at risk for anaphylaxis should carry their EAIs on their person. 
• Check your state's self-carry laws and learn more about your rights.
• Also familiarize yourself with the varied epinephrine policies for EMS workers: 
• Epinephrine Policy - US Map
• FARE's EMTs and Epinephrine page
• Those with serious medical conditions, including food allergies and anaphylaxis risks of any kind, should wear medical alert jewelry to alert medical professionals.  The symptoms of a severe allergic reaction may be confused for other conditions.

Post by Amazing and Atopic.

Please continue to share!

Giving Tuesday

They have Black Friday, Cyber Monday, etc., but the day that has perked me up and has me really excited is Giving Tuesday, which is tomorrow, December 3rd!

From the Giving Tuesday FAQ site:

Question: What is #GivingTuesday™?  Answer: #GivingTuesday™ (#GT) is a movement to create a national day of giving to kick off the giving season added to the calendar on the Tuesday following Thanksgiving, Black Friday and Cyber Monday. The second annual GivingTuesday is on December 3, 2013. In the same way that retail stores take part in Black Friday, we want the giving community to come together for #GivingTuesday. We ask that partners create and commit to a project for/on #GivingTuesday and then help spread the word to their networks.

Question: What is #GivingTuesday’s mission?  Answer: #GivingTuesday™ is a campaign to create a national day of giving at the start of the annual holiday season. It celebrates and encourages charitable activities that support non-profit organizations.

I think this is an excellent opportunity to think about ways we can give back to our communities and the organizations we value and support.  Think your local food bank could use some allergy-friendly foods? Want to do a clothing drive for a shelter?  How about earmarking a little of your holiday spending budget to help fund the various organizations that do so much for us?  Can you volunteer your time with any of these organizations, if your finances have seen better days?  (Even if times are really tight, though, remember that small donations do add up!)  Everyone has some talent, skill or resource that can benefit the community!

Happy Season of Giving!

Looking for ideas? Here are some that were inspired by various people who give so much of themselves:

• Donate allergy-friendly items to your local food bank (Inspired by Keeley McGuire)
• Donate blankets and clothing to local shelters (Inspired by my friend, Angel)
• Donate to the American Lung Association (Inspired by Caroline Moassessi/Grateful Foodie)
• Donate to the Arthritis Foundation (Inspired by my friend, Sara)
• Donate to St. Jude's (Inspired by Jenny Sprague/FABlogCon, Multiple Food Allergy Help)
• Donate course codes for Anaphylaxis First Aid Training to your local support group (Inspired by Elizabeth Goldenberg/EpiCenter Medical/Onespot Allergy)
• Donate to Kids with Food Allergies (Inspired by Lynda Mitchell)
• Donate to Food Allergy Research & Education (FARE)

Qvar - Inhaled Corticosteroid

It took me a long time to decide to start my daughter on Qvar, which is an inhaled corticosteroid, used to treat airway inflammation.  It is taken on a daily basis.  I didn't like the idea of having to "step up" to a daily dose of inhaled corticosteroids.  However, I didn't like the idea of feeling like her asthma just wasn't under control, either.  When your child has both asthma and life-threatening food allergies, it's pretty important to have their asthma well controlled.  Though she wasn't experiencing allergic reactions, she was needing her rescue inhaler more than I would have liked.  We also found ourselves using albuterol quite often.  I knew that I had to do something to get things under control.  I had already put allergen-protection covers on her mattress and her pillows, we washed her sheets, and even her light-blocking curtains, regularly.  We have a room air purifier, we change our air filters regularly.  Even with all these changes, we were still needing to use her other medications.

Articles I read noted that some children who take inhaled corticosteroids were about 1/2" shorter than their peers, on average.  My husband is 6'2" and I am 5'3", so odds are, she won't be that short, since she favors my husband more.  Even if she was to "lose" a half inch off her height, my thinking is, "better short, than short of breath."  I also learned that even with a daily dose of inhaled corticosteroids, it didn't come close to the amount that was in a single course of oral steroids.  (Though I am not averse to using those when needed, either.)

I took my daughter to her allergist and we discussed options.  As you can read in a previous post, my daughter was initially prescribed a medication that contained lactose and, therefore, possible traces of milk protein.  After a process of elimination, we ended up with Qvar.  Though the label states that it is for ages 5 and up, I was told it would be safe for my daughter, who was 4 years old, at the time.

Here is some information from the Qvar website about how it works:

How QVAR® Controls Asthma Symptoms
The importance of treating inflammation
What is inflammation? A rash is an example of inflammation on your skin. If you have asthma, you have inflammation in the large and small airways of your lungs. This inflammation is chronic, meaning it’s always there—even when you don’t have asthma symptoms.1 When left untreated, airway inflammation can cause asthma symptoms like coughing and wheezing,1 and may also cause serious damage to the lungs.2,3 By treating inflamed airways, you can reduce your risk of having asthma symptoms.4QVAR® is an inhaled corticosteroid (ICS) that can treat chronic inflammation caused by asthma.4 After you inhale QVAR®, it goes to your airways and reduces the inflammation in your lungs. QVAR® has been shown to improve lung function and asthma control, and to reduce asthma symptoms.4

Inflammation is not our friend!
Image: Qvar.com

At first, I was giving my daughter the wrong dosage (too little) and I didn't see much of a change in the first two weeks.  After we got her on the correct dosage, and learned the proper technique, using a spacer, things started to improve.

We're coming up on her 1-year anniversary of starting Qvar and I feel it has done wonders for her lungs.  I can't say she never coughed, again, or anything, but we've hardly ever used her rescue inhaler, this entire year, and I actually had her albuterol vials expire on us, unused!  She still coughs, at times, when she runs around too much, too fast, but she doesn't have so many issues with coughing at night, which used to be a big problem, for her.  

Overall, I am very happy with the results and I haven't seen any adverse effects.  Asthma management is definitely something to be discussed with your healthcare providers, but I just wanted to share our experiences.  I know we all want our children to breathe easy, so that we can, too!

You can visit the official Qvar site for more information.  If you're looking for a great book, check out my post on Asthma Allergies Children: A Parent's Guide.  Here's another article that you might find helpful, if you're feeling a bit hesitant to start a daily regimen of inhaled corticosteroids.  (This is not a sponsored post.)

Freedible Thanksgiving Campaign

The wonderful community at freedible is gathering recipes to help "bring everyone back to the table" for Thanksgiving.  So far, I have not come up with any recipes to contribute, but I am thankful to those who are sharing their recipes.  If you have any "Custom Eater"-friendly recipes, please consider popping over there to share!

When I read about this campaign, it really touched me, as I do want to make a concerted effort to provide a table full of foods that my daughter can choose from and not feel like everyone else is eating something different from her.  In our family, we have various dietary needs and I often can't eat what she is eating and she can't eat what I'm eating, but on this occasion, I'm going to find the common ground, so she can see uniform plates all around!  (ETA: We don't eat my daughter's major allergens in our home, but we eat things that she doesn't like (she's not a fan of "mixed" foods) or foods that have not been cleared as safe, due to cross-contact, etc.)  Being that she just turned 5, she might not be all that concerned about having the exact same thing, but I have noticed that she looks for a link between her plates and ours, at meal times.  We often share a common vegetable or something, and she will note, "I'm having carrots, too!"  So, she might not need *everything* to match, but I want to have as much to match as I can.

This can be a very stressful time of year, for those of us with food allergies and dietary restrictions, so I wish everyone as much peace as can be had!

Happy Thanksgiving from Amazing & Atopic!

Food Allergy Labeling - Warning Free Does NOT Equal Allergen Free

Below we have two product labels.  

Given a tree nut and milk allergy, which one is safe?

(click to enlarge)

Some may feel that a label with no allergen warnings is safer than one with advisory labeling, but that is not always the case.  I usually buy "Store Brand A" oatmeal, for my daily breakfast.  While shopping at "Store B", I remembered that I was out of oatmeal and wouldn't have time to get to "Store A" before the morning, so I grabbed the "Store Brand B" oatmeal.  The next morning, in my sleepy haze, I was taking out the packet and I did a double-take.  Something looked familiar.  Later on, when I had a new box of the "Store Brand B" oatmeal, I did a side-by-side comparison of the packets and they were the same!  The "B" packet had slightly brighter ink on it, but they matched, even down to the tiny code written across the top.  I am 99% certain that this is the exact same oatmeal, placed into different boxes.  I even paid $0.50 more for one of them!

Now, with the knowledge that these two products are likely the exact same product, look back at the difference in labeling.  One has no allergy warning labels, yet the other mentions that the item is "produced in a facility that processes tree nuts, milk and soy."  Even with this information, though, we can't know the full story, without contacting the company, to get the specifics on their manufacturing process.  Are those allergens processed on the same line?  Are they merely present in the facility?

SnackSafely.com has a great visual about the limitations of food allergen labeling in the U.S.  Here are some more details about the current FALCPA labeling laws.  The "Top 8" allergens, which I believe we all know by heart, are considered "Major Food Allergens".  

The name of the food source of a major food allergen must appear:
1.  In parentheses following the name of the ingredient.
Examples: "lecithin (soy)," "flour (wheat)," and "whey (milk)"
– OR –
2.  Immediately after or next to the list of ingredients in a "contains" statement.
Example: "Contains Wheat, Milk, and Soy."

[Note the key word "OR"...If it's listed within the ingredients list, it does not have to be listed separately at the bottom.]

As for the "Advisory" Labeling: (my emphasis added)

FALCPA’s labeling requirements do not apply to the potential or unintentional presence of major food allergens in foods resulting from "cross-contact" situations during manufacturing, e.g., because of shared equipment or processing lines. In the context of food allergens, "cross-contact" occurs when a residue or trace amount of an allergenic food becomes incorporated into another food not intended to contain it. FDA guidance for the food industry states that food allergen advisory statements, e.g., "may contain [allergen]" or "produced in a facility that also uses [allergen]" should not be used as a substitute for adhering to current good manufacturing practices and must be truthful and not misleading. FDA is considering ways to best manage the use of these types of statements by manufacturers to better inform consumers. 

The only thing we can discern from those labels is that the product is certified organic by QAI.  The lesson here is that you cannot take all food labels at face value.  Sometimes reading the label is not enough.  Be careful and stay safe!

FABlogCon 2013 - Post Complilation

The conference was amazing and there are so many things to cover, so I need a repository to store all of my posts about it!

Food Allergy Bloggers Conference - Live Updates

FABlogCon 2013 - FABlogCon City

FABlogCon 2013 - The Sessions - The Company You Keep

FABlogCon 2013 - The Sessions - Honest Pay - Monetizing Your Passion

FABlogCon 2013 - The Sessions - Honest Pay - Monetizing Your Passion

This is a continuation of my coverage of the sessions I attended at FABlogCon 2013.  If you missed the first part, for "The Company You Keep", you can find it here.  I wanted to add that the sessions under the "Advocacy and Disease Management" track were recorded and, therefore, I will only be covering these two sessions from the "Blogging" track.  I am awaiting further information on when/how the recorded sessions might be made available.  Though I missed Mary Fran Wiley's "Nitty Gritty - Make it Pretty! Blog Tips and Tricks" session, she was kind enough to share her presentation slides.  (Many thanks, Mary Fran!) 

"Hone$t Pay ~ Monetizing Your Passion"

Presented by:

Alisa Fleming - GoDairyFree.org and Senior Editor of Allergic Living Magazine

Alisa Fleming - GoDairyFree.org

Though many of the other sessions were panels, Alisa was a one-woman show!  She was brimming with information.  She started off with commentary about how many times we, as bloggers, might feel like we shouldn't take money for what we do, fearing that it would somehow compromise our integrity.  She posited, "Just because you enjoy your job, doesn't mean you should get paid" for doing it.  Many of us have no qualms with accepting our paychecks from paying "regular" jobs, yet somehow feel guilty about making money doing something about which we are passionate.  She said many of us, as mothers, are "built for guilt".  We put a great deal of time into what we do, as bloggers and advocates and shouldn't feel so guilty about finding ways to bring in some revenue in exchange for the services we provide and for the time spent on our various endeavors.  She also explained we're working on building trust with those with whom we collaborate.  Making money and maintaining credibility are not mutually exclusive, as long as you stay true to yourself.  She tailors her services to the needs of the company with whom she is collaborating, creating mutually beneficial arrangements.    

Alisa also started with a point about appearing professional.  She related the story of an early business venture with her husband in which she would answer the phone, place potential clients on hold, then pass the phone to her husband, to give the impression that they were a larger firm.  Their clients were very impressed with the quality of their work, especially once they realized it was a team of 2 instead of 20!

Moving on to the monetization methods, she delved right into the different ways that you can make money doing what you love, from advertising to creating books.

Alisa is the author of the self-published, best-selling book, "Go Dairy Free - The Guide and Cookbook for Milk Allergies, Lactose Intolerance, and Casein-Free Living".*  She suggested that everyone with a print book provide an eBook counterpart.  She noted that creating profiles on sites like CreateSpace is worth the time if you are timid about handling self-publishing on your own.  There are also sites that will convert your book to eBook format, if you are unable/unwilling to do so yourself.

Another form of revenue generation is working with brands (which was covered in the previous session).  She is a brand ambassador for Attune Foods, for example.  Alisa counseled attendees not to ignore Public Relations professionals, even if their product isn't right for you.  They may represent other brands and one of those might be a better fit for you.

Alisa also generates income through recipe creation.  Payment for this kind of work varies widely and often depends on the experience of the recipe creator.  She suggests thinking in terms of an hourly rate.  How many hours does it take to develop the recipe?  Per-recipe rates vary widely, depending on the level of expertise of the recipe developer, the company's budget, etc.  She suggests having an outside party test your recipes.    

Sources of revenue can sometimes come from unexpected sources.  They once posted a YouTube video called "Tetherball Bear", that went "viral", and they were able to raise money for the Animal Ark in Reno, NV.

Alisa also writes for publications like Allergic Living, for whom she is now a Senior Editor.  She has also provided training on various topics, and mentioned webinars as another option.  She also mentioned the use of the Amazon Affiliates program.  Affiliate links provide you with a small commission on products purchased, using your links.  (I have a Recommendations page, that uses Amazon Affiliate links, with the proceeds going to FARE.)

When considering taking an offer to attend an event, do not consider the travel accommodations as the full extent of your compensation.  There must be something value-added in it for you, because "your time is money" and covering travel expenses just gets you to the event.

Alisa also discussed how company budgets are set months, if not a full year in advance, which should be kept in mind.  She reiterated that your time spent is worth money, right now, and you need financial backing, if you wish to continue to share and help others, in the long term.

An audience member asked what was in a Media Kit, which was mentioned in the previous session.  Alisa explained that it was typically a 1-2 page information sheet with information about website traffic, Facebook and Twitter followers, target audience, demographics, etc.  It sometimes includes service offerings with and without prices.  She keeps hers simple and to the point and only provides it when asked.

Another question was asked about advertising and she said that you can customize advertisements to your website, but to keep the most standard sizes in mind: 300x250, 720x90 and 160x600.  She mentioned a service called Google Doubleclick, which she described as very useful, but the learning curve is a bit steep.

She closed with a reminder that there is enough room for everybody and camaraderie is key, which tied in with the earlier session's discussion about finding your voice.  It was quite an informational, enlightening and thought-provoking morning!  

My overall takeaway message from Alisa's session was that there is no reason to feel guilt over making money at something you feel passionate about, as long as you stay true to yourself and do not promote anything that you do not truly believe in, or believe will be helpful to your readers.  Our goal is to help people and generating revenue helps us continue in that pursuit.

*Amazon Affiliate Link - Proceeds sent to FARE.

FABlogCon 2013 - The Sessions - The Company Your Keep

OK! I have the Live Updates, which you can still look at to keep up with #FABlogCon-related feeds and I posted my FABlogCon City write-up, about the general flow of the conference, and now it's time to cover the sessions!

Look familiar? That's because I made the brochures! ;)

"The Company You Keep"

Panel Members: 

Tess Masters (The Blender Girl), Joel Warady (Enjoy Life Foods CMO), and Annelies Zijderveld (Attune Foods)

The first session I attended was "The Company You Keep", which covered forming partnerships and interacting with brands/companies.  Though it was an interactive panel, with each panelist taking turns back and forth, it might be best to address each speaker's wisdom, separately.  The panelists were very open and I was riveted, throughout the presentation.  I can't remember who made this starting point, but it was said that this new social media realm is still very new and free-form.  It's like "The Wild West", with opportunities for definition.

Tess Masters discussed seeing yourself as a "brand".  She discussed considering things for the long term and seeing short-term choices as serving long-term goals.  One of the many great pieces of advice was to consider what your "currency" is and noted that getting paid is a pretty short-term strategy.  You also have to be careful when getting paid for something.  She compared working with brands to dating and gave a colorful analogy about not coming across too eager.

She advised that one should play to their strengths and not try to be everything to everyone.  Within 30 seconds, your blog content and visuals should give a strong impression of who you are and your purpose.  Tess encouraged collaboration with other bloggers and said that, "social media is about celebrating others", as opposed to relentless self-promotion.

Tess, being on the blogging/individual brand side of the aisle, discussed some of the campaigns in which she participates and/or organizes.  She does giveaways very sparingly, as they require a great deal of effort, with little reward.  She does product launches, recipe development, etc.  She has written books that have included other blenders aside from the Vitamix, over the years, so you need not be exclusive to one brand, though you may eventually reach Brand Ambassador status with them, as evidenced by the fact that she is now the "The Face" of Vitamix's recipe and technique videos.

My overall takeaway message from Tess Masters was to always keep your eye on the long-term and focusing on getting paid can often be short-sighted.

Joel Warady discussed how they look for professionalism in those they seek to do business with - noting, "we want to do business with business people".  He said they review bloggers and look for comments on their blog.  He wants to see how engaged your audience is, because even though a blogger may have a smaller following, they might be very active.  They're not looking for bloggers to only provide positive reviews - they're looking for transparency and genuineness.  He goes straight to LinkedIn to search for a profile and even consults other bloggers to inquire about the blogger under review.  He searches Instagram, as well.  When discussing bloggers being "a brand", he pointed to Keeley McGuire's picture of her and her daughter, sticking their tongues out and how that was funny, memorable and recognizable.  ("She made sticking out your tongue famous before Miley!")

He counseled bloggers not to bombard a company with pitches when they are at a trade show or conference - they are there for the customers and it's not the right time or place.  If you have a well-thought-out idea for an awesome campaign, they'd be interested, if presented at an appropriate time.  As much as he understands that many of us are mothers and they very much love their customer base, he did note that they are not particularly interested in videos of young children trying and enjoying their products. (*putting away my video camera*)  However, they are very interested in "digital first" and would love new ideas involving Vine, Instagram, etc.  He reminded the audience that they are in the advertising industry.  They are always looking for the next big thing.  He suggested an article by Tom Peters titled, "The Brand Called You".

As far as payment goes, Joel stated that they do not typically pay, but there are certainly times that they have paid for campaigns.  Sometimes bloggers get perks, in lieu of payment, such as being the first to receive a new product before it is available on store shelves.  As previously stated, they are always open to new, creative ideas.  During the discussion on "Brand Ambassadors", Joel noted that they don't collaborate with bloggers in that capacity.

My overall takeaway message from Joel Warady was to be professional and consistent, if you want to work with other professionals.

Annelies Zijderveld stated that they are looking to raise brand awareness.  One should ask themselves -  What does my brand stand for, and does my blog design align with that?  She asked that bloggers ensure that their private personas match with that of their blog.  Annelies suggested that your email address be easy to find on your site.  Brands cannot contact you without an easy-to-find contact email.  

She said that they provide samples, but never with the expectation of a review.  Annelies said that they usually do pay bloggers for campaigns and there was discussion about the determination of budgets, which are typically set a year in advance.  She related that there have been cases where a blogger has approached her with an idea, and it just so happened to be the same one that was about to be launched.  Even though they couldn't work with that blogger on that particular project, they are certainly kept in mind for future projects.  Another piece of advice was to be very specific when approaching a brand with an idea.  These specifics pertain to the concept for the promotion or campaign, but she counsels bloggers to shy away from submitting lists of "sponsorship opportunities" with prices listed, which may be seen as too "forward".

When Attune works with Brand Ambassadors, it is usually a seasoned blogger.  While Joel is not so much interested in demographics, Annelies is very interested, which points to the need for bloggers to get to know the companies with whom they want to collaborate.  It seemed pretty universal, though, that unsolicited Media Kits, end up in the circular filing cabinet.

My overall takeaway message from Annelies Zijderveld was to find your voice, be true to yourself and approach companies with a friendly, yet detailed and organized approach.

---

During Q&A time, Erica Dermer of Celiac and the Beast asked a question about whether being "edgy" was detrimental to her work as a blogger/brand.  Tess Masters was pretty emphatic that it was not.  She said there was no need to change who she was and that being different is OK.  Annelies added that finding their voice can be hard for many bloggers, so just be true to yourself.  Tess added that you won't be right for everybody and that's OK.

I asked the question about those who are "in the middle", who aren't completely dedicated to being a "brand" (even though we already are, from the moment we hit "Publish" on that first blog post).  I explained how sometimes I have more ideas than time, and was curious if they'd be interested in hearing ideas that we, perhaps, wouldn't be available to execute.  They were polite about it and said, "sure", but I think I knew by this point in the session that there would come a time when each blogger, myself included, would need to make a concerted effort to decide on your overall vision.

I know, personally, I just sat down, one day, frustrated with the lack of information provided after diagnosis, along with the unnecessarily lengthy road to diagnosis and started writing to put out information as I received it, hoping to shorten the learning curve for others.  Next thing I know, two years have passed!  Soon, I will have to take a moment and ponder the future...

Well, this single session has taken up an entire blog post, so I will have to make this a series! Until next time... 

FABlogCon 2013 - FABlogCon City

I had the great privilege to attend the inaugural Food Allergy Bloggers Conference, in Las Vegas, NV, last weekend!  It was such a amazing experience and I'm not sure how to cover it all, but I will give it a try.

Base image from IconShock.com

I was thinking about the conference and as I was drifting off to sleep, the song "We Built This City" popped into my head.  If you're not familiar with the Starship hit from the 80s, you can find it on YouTube.  The main chorus includes, "We built this city on rock and roll."  This community has been building and growing over the years, and Jenny and Homa "built" a city in which our virtual community was able to live for a few days.  Sometimes we might feel like The Sims, interacting online, but we're obviously real people and this gave us a 3D space to inhabit.  These industrious city planners found a location with safe food (no easy task!), entertainment, education, and accommodations.  When I was there, I felt like I was living in a custom-made world, where I could walk down the lane and visit all of the members of this bustling city...There were product and service providers ("stores"), book authors ("the library"), information powerhouses ("school teachers"), even doctors - all of whose skills and offerings were tailored to our specific communities needs and wants.  There were different neighborhoods - the Gluten-Free Garden, the Anaphylaxis Atrium...OK, I'm totally making those up, but I feel that FABlogCon City was fairly well represented and there was warmth, compassion and understanding among the neighbors.    

As people moved into FABlogCon City, they were met with quite the welcome wagon!  Aside from the Welcome Packet, they were handed not one, but two bags of swag!  When I was handing out those goodies, I felt like the Swag Fairy!  Whole Foods wasn't an event sponsor, but they graciously provided bags for the event.  Elyse Hahne (Live Learn {through} Everyday Life) and Sharon Wong were kind enough to lend me photos of their swag, as I didn't manage to get any - oops!  One entire bag was stuffed with tasty Try-Mes from Gold Presenting Sponsor - Enjoy Life Foods!

Las Vegas reusable bag - Yes!

A WHOLE bag of Enjoy Life Foods goodies!
Photo Credit: Elyse Hahne (Thanks for lending me a pic, Elyse!)

Look at all this loot!
Photo Credit: Sharon Wong (Thank you so much, Sharon!)

Speaking of sponsors, HUGE thanks go to Sanofi US, for being the Platinum Presenting Sponsor for the event, making the event possible.

Many thanks for helping make this event possible!

It takes the generous support of a great many sponsors to make the building of such a "city" possible.  Here are those "FABlogCon City Boosters":

FABlogCon 2013 Sponsors

The event kicked off with a Welcome Party.  We were reminded of why many of us do what we do, as Jenny read a list of names of those we lost to food allergies, this year.  Jenny gave a speech, thanking everyone for sharing in her vision and marveling at the life everyone breathed into her dreams for a conference, such as this...Next, she introduced Nevada Senator Debbie Smith, who spoke about the process of getting Stock Epinephrine legislation passed, with the help of an organized and supportive group of people, including Caroline Moassessi of Grateful Foodie.  She told the crowd that SIX lives have already been saved, since the legislation was enacted.  The Senator was presented with flowers and "Thank You" cards from the local schoolchildren.

Senator Debbie Smith of Nevada
with Jenny Sprague

Next up was Dr. Eric Edwards, co-inventor (along with twin brother Evan) of the Auvi-Q epinephrine injector.  He gave an inspiring speech, noting that the assembly of passionate, dedicated individuals could bring about great change.

The evening was whirlwind of hugging, chatting and picture-taking (see slideshow at the end of this post).  I was pretty exhausted by the end of the party, being 2 hours out of my time zone (I am a sleepyhead, these days!)

I was so excited to have Jennifer Roberge, of The Eczema Company and Itchy Little World, as my roommate!  We're been friends online (she lives in Montreal, Canada and I live in Texas) and it was great to be able to meet her, in person.  Getting to just sit and talk to her, like besties on vacation, was wonderful.  

Jennifer Roberge & Selena Bluntzer - Roomies!

(Sessions will be covered in a separate blog post.  It's a lot to cover!) 

The second night we had the Wine & Sign Cocktail Party.  I packed some of my books and was happy to have them signed by the authors.  There were some books that I didn't have room for in my luggage and I was bummed.  It was another great evening, whiling the hours away, getting to soak up as much as I could of those I could manage to visit.

The final night allowed a spot of time to take Elizabeth Goldenberg (Onespot Allergy / EpiCenter Medical) and Jennifer Roberge to see "The Strip".  I was also happy that Lacy Wade (Making it Milk Free) and Sarah Hoskinson (Don't Feed My Monkeys) could join us.  We ate dinner at the Aria Buffet and then popped over to The Bellagio for a brief and lucrative stop at the roulette table for myself and Sarah!  It was a great ending to the trip.

Sarah, Lacy, Selena, Elizabeth, Jennifer

On Tuesday morning, I got to share a cab to the airport with Jennifer, and get just a little more time with her, which was great.  It was a simultaneously energizing, yet completely exhausting trip and I loved it!

Many heartfelt thanks to Jenny and Homa, for taking the helm and building us this "city" for us to commune and collaborate in, with others who share a common understanding.

Now, for the photo slideshow!

Food Allergy Bloggers Conference - Live Updates

I know that I am incredibly lucky to be attending the Food Allergy Bloggers Conference in Las Vegas and am very grateful.  I know there are many who want to attend and are unable, so please forgive my profuse excitement.  With as excited as I am, I am also aware that I am attending as an (extremely willing) ambassador for all those who cannot be present.  If you have any questions you would like me to ask, or issues to bring forth, please send me a message and I will do my best!  If you'd like to keep up with what's going on at the conference, I have made some widgets:

@AmazingAtopic Tweets

Tweets by @AmazingAtopic

#FABlogCon Tweets

Tweets about "#FABlogCon"

Instagram Feed: 

Peanuts on Planes - The Supply-Side Issue

As I was getting some things ready for my trip to the Food Allergy Bloggers Conference, my thoughts turned to a picture I took last time I was at the airport:

Geez, look at the "variety" of options...

I thought about how a huge part of the problem we face with peanuts and tree nuts on planes is actually a supply-side problem.  Sure, we have people who really, really want airlines to serve them their little bags of peanuts, but if alternate snacks are on a particular fight, there usually aren't any tears over it.  However, there's another group of people - those who brought their peanuts/tree nuts with them on the flight.  I can understand their feelings of slight irritation at being asked to not eat the snack they just paid a "convenience price" ($$) for, just moments earlier.  When you walk by those airport kiosks, you see racks and racks of nutty "noms" for sale!

Now, even though I can understand their brief frustration, I do hope that they would understand that they are being asked to refrain from eating their nutty snacks, out of consideration for the health and safety of another human being and would not have a "hissy fit" over it, but I digress...

So, back to the supply-side problem.  Even if all airlines banned peanuts and nuts on all flights, today, there would still be mountains of them for sale throughout the airport.  I don't know what the solution is, but I think it's one of the many topics we can discuss at the conference.  I think if we can get even a "peanut-reduced" airport/airline environment, things would be a degree safer for peanut/tree nuts allergic passengers.  Plus, if the airlines agree to discontinue the service of peanuts/nuts on flights with an allergic passenger are aboard, and less passengers are boarding with their own, then there should be less agitation when passengers are asked to forego nutty snacks.

What are your thoughts?  (Trolls need not comment, thank you!)

New Anaphylaxis Prevalence Findings

Image courtesy of AAFA

We've just received word from Kids with Food Allergies/AAFA about an enlightening study, "Anaphylaxis in America" that was recently published in the Journal of Allergy and Clinical Immunology (JACI).  You can view the full text of the article here.

Dr. Robert Wood was the head researcher, along with 10 other authors and research panel members.  The study was conceived and conducted by the Asthma and Allergy Foundation of America (AAFA), with the financial support of Sanofi, maker of the Auvi-Q.

This study sought to get a better understanding of the prevalence of anaphylaxis in America, but reaching out to a broader population.  Tens of thousands of numbers were called, in order to find individuals who have had an anaphylactic reaction within the past 10 years.  If the patient was a child, then the caregiver responded on their behalf.  From this search, they found 1,059 patients to survey.  They also interview 1,000 members of the general public, to assess awareness levels and attitudes surrounding anaphylaxis.

For the purposes of the study, they defined anaphylaxis as "a severe, sudden allergic reaction that typically involves two or more [systems], such as the skin, airways, lungs, stomach, heart and blood pressure."  The study included anaphylaxis from all triggers.

• They found that anaphylaxis was "very likely" to have occurred in approximately 1-in-50 (1.6%) Americans, based on certain stricter criteria and "probably occurred" in roughly 1-in-20 (5.1%) Americans, based on slightly broader criteria.  This includes patients of all ages.
• They found that the top 3 causes of anaphylaxis were medications (34%), food (31%) and insect stings (20%).  Idiopathic (reactions with an unknown cause) were found in 11% of participants and latex was the cause in 2.6% of patients.
• As is most likely no surprise to many of us, the following concomitant condition were also found, with corresponding percentages: asthma (32%), hay fever (41%) and eczema (26%)
• In what I feel is a disturbing, yet unfortunately unsurprising, finding is that when surveyed about actions taken during a reaction, roughly 27% of patients self-administered anti-histamines as their treatment method, whereas only 11% self-administered epinephrine.  To me, this shows an excessively dangerous reliance on antihistamines, and a dangerously low usage rate of the life-saving treatment with epinephrine.
• Another unsettling finding was under the "Current Epinephrine Practices" section.   Note that the persons surveyed have experienced anaphylaxis, before.  Despite this, the combined percentage of those who have epinephrine prescribed and do not carry and "none of the above", which I take to mean no prescription and do not carry, adds up to around 60% of patients.  That is simply too high.
• When asked about their planned treatment method for future reactions, roughly 36% said they would use antihistamines (NO!!!!) and 44% said they would call 911 (YES!!).  Another 32% said they would use epinephrine, which is good, but how can they, when do many of them don't even have it?
• The study also showed a lack of patient education about what, exactly, anaphylaxis is and how to deal with it.  

The bottom line is there is still so much education that needs to be done, from every angle.  Physicians need to do a better job.  We, as advocates, need to work harder to get the facts out, to the general public.  The numbers are rising and fewer and fewer people are living lives that are completely untouched by anaphylaxis. 

Many thanks to JACI for making this journal article free to the public!

Anaphylaxis First Aid Training is a MUST

I can't think of too many things more important in our anaphylaxis advocacy toolbox, than expanding the number of people trained to deal with an anaphylactic emergency.  Surely, our #1 goal is to remove all causes of anaphylaxis, but that is a long-term goal and there are people who might need assistance, at any moment.  As I've said in my post about the training course, earlier this year, "A trained world is a safer world."  The more people walking around with the knowledge of how to recognize and treat an anaphylactic emergency, the better!

In the interest of increasing the number of rescue-ready individuals, Elizabeth Goldenberg, of OneSpot Allergy and EpiCenter Medical, has set up an IndieGoGo Fundraiser to raise funds to provide her top-notch training course, for free, to educators in Canada and the U.S.  Educators are responsible for groups of several children, at one time.  They are most often dealing with young people, in which the populations of allergic conditions is exploding.  Two of our main training goals should be to train everyone in our families, who might have a care for our allergic loved ones and to also get this training to educators, who are caring for large groups of children, some of whom might not even be aware that they are allergic.

As a contributor to this campaign, donors will receive a number of course codes equal to those they sponsor for educators.  If a donor sponsors one class, they will get a free class code to distribute as they see fit, while simultaneously covering the training for an educator and spreading the knowledge far and wide.  If they sponsor 3, they will get 3, and so on...  There is also a $5 level available for those who wish to contribute to the project, but cannot cover the cost of a full course.  Every dollar (U.S. or Canadian) helps!

I am honored to be a part of this campaign and I hope everyone else can see the true benefit of this project.  Thank you for your time and we hope for your generous support!

Two-Year Blogiversary!

My daughter will be 5 years old next month, and her food allergies were diagnosed 3 1/2 years ago, and today marks 2 years since I started this blog!  I cannot believe how quickly any of those amounts of time have passed!

I was looking back at my original Introduction post, and thought I might quote a piece which explains the name of my blog.  The "Amazing" part is definitely my sweet angel baby, but this is the meaning behind the "Atopic" portion:

What does atopic mean, you ask?  Well, according to Wikipedia, "atopic syndrome is a predisposition toward developing certain allergic hypersensitivity reactions."  When I stumbled upon this Wikipedia page, I felt like I was reading all about the things she experiences.  "Atopy (atopic syndrome) is a disease characterized by a tendency to be 'hyperallergic'. A patient with atopy typically presents with one or more of the following: eczema (atopic dermatitis), allergic rhinitis (hayfever), allergic conjunctivitis, or allergic asthma. Patients with atopy also have a tendency to have food allergies."

I feel like we've made some progress over these years.  My daughter's eczema is relatively under control, especially in comparison to her early days.

Before we knew about her food allergies...

MUCH better!

I think back on her days of frequent nebulizer use and now I think about how it's hard to remember the last time we even used it.  It has been about 3 years since my daughter's last major allergic reaction.  I still have anxiety over issues we have yet to face, since she is still home with me, but I can see things are definitely improved from those first couple of years.

Even with all that has improved and as far up the learning curve I've climbed, I find it's sometimes like a sine wave, where we slide back down the curve when new challenges present themselves.  The good thing is, though, that I know I've made it up previous hills and there are so many helpful people out in the world, to assist in scooting us up along our next hill.

Source: Wikipedia

This blog was started in the hopes of helping others, as I felt I was left by our physicians to fly solo, with little to no guidance, and I am amazed at the wonderful community that exists out in the blogosphere, online support groups, etc., with so many to offer their support and knowledge.  

I am excitedly looking forward to meeting many of these fabulous community members at the Food Allergy Bloggers Conference, in a few weeks!  I know that I am incredibly lucky to be able to attend and if there is any topic that you would like me to bring up, or found out more about, during the conference, please send me a line.  You can follow my tweets, along with everyone else's, using the hashtag #FABlogCon.  

Thank you all for taking the time to read my blog.  I hope that I have been of some help and if you have ideas about how I may better assist you, please let me know.

(((HUGS))) TO YOU ALL!!

Quinoa Milk - New Non-Dairy Milk Option

Reminder: I am not a dietitian, nutritionist, physician, etc.  I am a mother, always on the lookout for safe options for my daughter.  Please feel free to consult a professional for further guidance.

I found a new non-dairy milk at Whole Foods Market - Suzie's Quinoa Milk.  I explained my daughter's food allergies in an email to customer service, to which they replied, "Quinoa Milk is gluten free, soy, rice and nut free."  I asked a follow-up question and was told that cow's milk was not made on the same line.

I bought a carton of the Vanilla, since that is usually my daughter's preferred flavor.  They also have Unsweetened and Unsweetened Vanilla, but no "Original".  I noticed that it does not contain carrageenan, which I know is an ingredient that gives some pause.   The Unsweetened variety does not contain organic evaporated cane juice and the Unsweetened Vanilla does not contain that, nor "natural vanilla flavor with other natural flavors".  

I gave her a little taste and she said it was, "very sweet" and "very vanilla-y"...I tried a little taste and it was, indeed, very "vanilla-y".  It seemed like it would be perfect for use in baking, but I don't think my daughter will want it for regular drinking.  She has asked me to mix it in with her hemp milk, but we haven't tried that, yet.  In any event, it's a new option that could be safe for you and/or your child and I wanted to share!

It's available at our Whole Foods, but the company's Facebook page also mentioned that it was available via Amazon.  

I will update my post, Non-Dairy Milk Comparisons with the Food-Allergic Child in Mind, when I have a chance, but in the meantime, I think you can see that it is probably not the #1 choice as the primary source for a little one's nutritional needs, as it has very little fat, but safety sometimes trumps ideal nutritional makeup.  I think it's close to the profile for rice milk.  It's always good to have a wide variety of non-dairy milks available, so welcome to the club, quinoa!

Customer-Facing Employees - Please Be Mindful of Food Allergies

Do you work in a job where you interact with customers, patients, clients, etc.?  Here is a partial list of the kinds of employees I'm thinking of when writing this post:  cashiers, copy shop employees, bank tellers, post office staff, front office assistants, doctors, nurses, pharmacists, etc.  If you interact with anyone in a manner where you touch something that you give to the general public, or you actually have to touch the patients/clients, yourself, I ask for a moment of your time.

I understand that many jobs are fast-paced, leaving little time to sit down for a decent meal and you find yourself needing to snack throughout the day, to make it through your long shifts.  I have a neuromuscular condition that requires that I eat regularly to keep my strength up, so I truly understand the need to eat that often exists, in addition to the basic need for survival.

However, I ask you to consider the possibility that a growing portion of the people that you interact with throughout your day, might have food allergies.  Nobody would ask that you simply stop eating, because you need to eat to live.  Perhaps, though, you might consider washing your hands before you continue to serve your customers, or have a general awareness of the state of your hands, clothing and work area, as it pertains to food residue.

Messy eater? Me? Nah...

If you are a nurse or doctor, for example, you might be thinking, "of course I wash my hands!"  I know you do (and I thoroughly appreciate all the hard work you do!), but I would then tell you about the time I was in the ER and the nurse came in to check on me and she had her clean hands in her sterile gloves, but the whole front of her shirt was covered in crumbs, from the snack she was just eating.  She looked down and brushed them off her scrubs and continued to treat me.  I, personally, do not have a food allergy, but my daughter does and I immediately thought of her.  I imagined those crumbs of who-knows-what flying towards her and shuddered at those once-sterile gloves, that were now coated with food residue.  I have always had wonderful nurses (I have had a lot of medical visits in my life), and I understand that they are so very busy, working long hours, and eating can be catch-as-catch-can.  All I ask is that you be aware of food residues when treating patients.  Make sure your clothing is as reasonably free of food, as can be managed.  (I know you might also be thinking, "do you know what ELSE is all over my clothing?" and yes, I can imagine, but one thing at a time. ;)

Here are some other scenarios that I have encountered:

• I was once waiting on a large print order and the employee had an open bag of mixed nuts, spilled out onto a blank sheet of paper.  He was eating them as he was fixing up the job.  Luckily, it was a laminated job and I wiped them all down, since they were to be given to my daughter.  (I actually have to wipe most things down before I give them to my daughter, but seeing the mixed nuts all over added to my anxiety level.)
• Another time, I was at an exhibit with my daughter and she wanted to go up and visit this one table, but the ladies managing the table were eating Doritos, and peanut butter granola bars.  These were hands-on exhibits, so we skipped that table.  I still had to wipe her hands and some objects at other tables, because who knows what was eaten before we walked up, but eating-in-progress is more of an immediate issue.
• I remember seeing a pharmacy employee eating chocolate candy, then wiping her hands on her coat, to get the crumbs off, and then filling a prescription bottle.  (I've heard similar reports about pharmacy employees eating and touching prescriptions, so I don't think this was an isolated incident.)     

That is just a random sampling.  Again, I don't expect the world to stop eating, but I just ask if, when going about your day, you might give a moment's thought to how your food consumption, in the middle of your work time, might impact others.  I am asking this on behalf of my daughter, and all those like her who live with the risk of anaphylaxis.  I'm just looking for a way we can all work together, with a minimal amount of disruption, to keep them safe.  I know we can't live in a food-free world, but any amount of food-residue reduction would help.  Thank you for your time. :)