It Has What?!? Milk Protein in Asthma and Allergy Medications

I learned something new this month and it scared me.

I have always heard reminders about the importance of checking labels for not just food but everything: soaps, bird feed, fertilizer, chalk, drugs.  And I thought I had always been good about reading through labels.  However, while checking my Facebook feed, I scanned over a status update from Allergic Living that highlighted its feature on milk protein in asthma medication.  I stopped.  I reread the sentence.  Uh oh.  I've never questioned whether my own asthma management medication could be a source of danger for my kids!!

In our emergency med pack, I was toting Auvi-Q epinephrine injectors for my kids and an inhaler
for me.  Little did I know my inhaler contained milk protein that could put my kids' lives at risk.

After reading through the whole article and scouring through more information online, I discovered that Advair and Ventolin do in fact contain milk protein in the form of lactose dry milk powder.  In addition to these two products, milk derivatives are also present in popular allergy and asthma relief drugs such as Singulair, Flovent, Claritin tablets, and Prednisone -- yes, Prednisone, the drug that is often given to prevent a biphasic reaction after anaphylaxis.  Seriously, how did I not know this??  How did I miss this all these years?

Here's how:  While 2004's Food Allergen Labeling and Consumer Protection Act (FALCPA) made it mandatory for all food products to be properly labeled to identify the presence of the top 8 food allergens, the same rules do not pertain to non-food products.  Prescription drugs, over-the-counter drugs, health and beauty products, and pet supplies (including pet food) are just several of "non-food products" that fall outside of the FDA's regulatory net.  (For a more in-depth look at what the act affects, check out Kid with Food Allergies summary on FALCPA.)

So drug manufacturers are not required to label food allergens on their packaging.  The FDA does require medications to be accompanied by patient package inserts.  These inserts are written in microscopic font on a one-page, single-spaced, double-sided document that is notoriously lengthy and technical.  This information is nearly impossible to get through without a medical degree and magnifying glass, even if you are looking for your kids' allergen buzz words with eagle eyes.  What's more, patient package inserts do not have to list ingredients or food allergens.  The inserts include sections on how the drug works, indications, contraindications, warnings and side effects, and dosage recommendations, and it is the drug manufacturer's discretion to list food allergens. 

I checked the package labels of my asthma management meds which I last filled in spring, the time of the year when I endure a full-on attack by grass and tree pollens.  No mention of milk ingredients.  There was a mention of a mysterious white aerosol and instructions to rinse my mouth thoroughly after each use...These warnings should have been red flags to me to dig deeper over the ingredients.

How to find out if your asthma medication contains milk:

1. Check out this list of asthma medications that contain lactose (milk) compiled by the Allergy Asthma Information Association (AAIA).  Please keep in mind that this list is from 2006 -- most certainly there is updated information out there.  
2. Remind your physician or child's pediatrician about their food allergies when they are about to be prescribed medication.  Contact your allergist about medications you or your kids are prescribed.  Are they free of your (children's) allergens?
3. Do your homework online.  Search your medication by name to see if it is milk-free.
4. Please, please have your kids wear some sort of allergy alert identification (medical bracelets, wristbands, dog tags).  If an emergency occurs and you or they cannot advocate for themselves, these medical alerts could prevent them from receiving treatment that will make an asthma attack or anaphylactic reaction even worse.

Do you manage asthma and a milk allergy?  When did you find out that asthma treatment medications contain milk products?

It Has What?!? Concerns about herbal supplements and the big picture of food safety underregulation

A recent study on herbal supplements serves as another cautionary tale about
dietary supplements, an underfunded FDA, and a marketplace out of control.

Very troubling news about companies that are not selling what consumers think they are buying.

Last week my local public radio station aired an hour-long segment on herbal supplements.  Herbal supplements are big business in the US with approximately 29,000 products on the market and Americans spending an estimated $5 billion annually on them.  Scientists at the University of Guelph, Ontario, recently published results of a study of 44 herbal products that used a technique, DNA barcoding, to verify the products' ingredients.  A staggering majority of herbal supplements were found to be diluted or replaced with fillers.  Here are the quick findings:

• Of the 44 herbal products tested (all 44 sold by 12 companies), nearly 60 percent of the products contained plant-based ingredients not listed on the labels.
• In nearly one-third of the products, the marketed herb was completely replaced with another plant substitute.  (No trace of the advertised herb was found.)
• Over one-fifth of the 44 products tested contained fillers that WERE NOT LISTED on the ingredient labels.  These fillers were derived from wheat, soy, or rice.

Altering ingredients is potentially harmful to those who use supplements as part of their daily health regimens or management plans for their ailments.  And it is downright deadly for those with food allergies.  How is it possible that herbal supplements can get away with this?

First of all, herbal supplements (like vitamins and other dietary supplements) are categorized as food not drugs in accordance with the Dietary Supplement Health and Education Act of 1994.  Because they are not considered drugs, supplements are not subject to the same rigorous FDA safety and effectiveness testing done for new drugs.

Supplements are categorized as food so they must follow certain standards.  Under the Food Allergen Labeling and Consumer Protection Act of 2004, all food products regulated by the FDA must meet specific guidelines for listing the most common 8 food allergens (milk, egg, soy, wheat, fish, shellfish, peanuts, tree nuts) on ingredient labels.   Herbal supplements fall under the food product category so -- in theory -- they must follow the FALCPA mandate and be forthcoming with listing the most common food allergens on their labels.

The 2008 Current Good Manufacturing Practices (cGMPs) established new regulations that require dietary supplement manufacturers to undertake numerous tests during the production process.  Many manufacturers makers source the ingredients for their product from third-party suppliers  including suppliers from foreign countries.  The cGMPs hold companies responsible for testing all incoming components for their products to make sure that the components match exactly what they had ordered.  Only after verifying the accuracy of the ingredients should supplement manufacturers use the ingredients to create their supplements.  Finished batches of supplements must also be tested.

The enactment of food allergy labeling (FALCPA) and guidelines for testing (cGMPs) should ensure that the supplements are what they say on the labels, right?

It should.  But officials with the FDA itself assert that a great portion of the dietary supplement industry continues to be non-compliant with the cGMP mandate.  And the severely underfunded and overextended FDA admits it does not have the means to check all products coming into the marketplace.  (DNA barcoding and Enzyme-Linked Immunosorbent Assay (ELISA) for food allergens are expensive.)  The FDA are largely reliant on the diligence of consumers to report suspected bad products and the good faith of companies to offer honest, safeguarded products.

A doctor/presenter that I heard speak at the recent Food Allergy Bloggers Conference confirmed that most errors in labeling/ingredients are caught by the manufacturers themselves through their own independent testing.  Recalls are voluntarily initiated by these food manufacturers.  She reasoned that companies are forthcoming because it is in their best interests to resolve accidental mislabeling of food allergens -- they do not want to damage their good reputation among their customer base.  I admit, this revelation does not sit comfortably with me at all.

The University of Guelph's study shows us that we should not have faith in herbal supplements:  herbal companies are slipping through the cracks with watered-down products whose labels are incomplete, inaccurate, and just plain dishonest.  The study reminded me of the tainted infant formula scandal in China from several years back.  Dishonest producers and non-existent food safety regulations led to the illness of 300,000 people, over 50,000 of them being infants.

Over many years of being a food allergy mom, I feel like I'm pretty good about checking ingredient labels for food allergens.  But there's absolutely no way I could protect my kids from food allergens that are in supplements that blatantly omit ingredients from their label in order to hide their shady practices.  We as a nation must demand stricter guidelines on food labeling and regulations.  We need to hold companies accountable for testing their ingredients.  I would love to know where ingredients are sourced (U.S. grown or are they imported?  From where?) and how they are grown (GMOs vs. non-GMOs).

I was never much of a supplements kind of gal.  And with this latest disturbing report, I don't think I will be anytime soon.  The more I read and listen, the more I worry about the safety of any manufactured food product.  We shouldn't have to wait until someone ends up sick or dying to know the truth about what we are putting into our bodies.

If you don't have time to listen to the audio segment of the talk, the New York Times published a nice summary of the University of Guelph's study and implications here.  

Recap: 2013 Food Allergy Bloggers Conference

Last weekend Sarah and I attended the first ever Food Allergy Bloggers Conference, an event that drew scores of food allergy parents, parent-bloggers, and parents-turned-bloggers-turned-enterpreneurs together in Las Vegas.

After a stressful week at home, we relaxed on the Vegas Strip
to ready ourselves for an event-filled FABlogCon. 

Over the course of two days, prominent allergists, physicians, and researchers expanded our knowledge  on anaphylaxis and its incidence rates, the importance of epinephrine, current clinical research on possible treatments, and the varying impact of food allergies across different age groups.  There were also practical sessions with authors, tech gurus, and successful proponents of food allergy legislation who offered advice on how to take the next steps in our advocacy work, personal blogs, and related pursuits to craft and market our hard work into something more accessible and possibly profitable.

Pediatric allergist and co-founder of AllergyHome, Michael Pistiner,
talked about the social and emotional impact of food allergies and their
effects on the ways adolescents and young adults manage them.
Sobering and alarming research on risk-taking!

The conference was as rich with information as it was with passionate and creative attendees.  There were parents, grandparents, siblings, and individuals living with food allergies themselves.  If you have checked out a food allergy blog or bought a product or cookbook that catered towards your restricted diet, chances are the individual behind that precious resource was there at the conference!  I couldn't help feeling a little intimidated upon first meeting Lynda Mitchell, founder of Kids with Food Allergies; Eric Edwards, co-inventor of Auvi-Q epinephrine auto-injector;  and Heather Mehra, co-creator of the No Biggie Bunch children's books.  Of course, after we started chatting my nerves eased up.  They, as well as all the attendees I met, are just regular people whose work is motivated by wanting to support all who are also living with food allergies.

We were beyond excited to talk with Auvi-Q co-inventor,
Eric Edwards.  Eric's passion was evident as he told us about
the research and development process.  He wanted to know all
about Sarah's son's experience with self-administering Auvi-Q.

Our newest food allergy friend, Devin, is the author of Nom Yum Free.
Check out her blog's gorgeous photos of her vegan, nut-free, raw recipes.

Allermates was one of many generous sponsors.  They provided all attendees
with free allergy alert wristbands and labels and an insulated medicine bag.

Some of the free products and books from FABlogCon sponsors.  I had to eat
my Sun Cups and Skeeter Snacks because they simply would not fit into the photo.

So many bloggers and food allergy advocates, and so little time!  I wish I could have met Drs. Michael Pistiner and John Lee, allergists and co-founders of AllergyHome.  AllergyHome is one of my favorite resources for educating caregivers, school communities, and others whose awareness is critical in keeping our food-allergic kids safe.  Its Facebook page sends out clever food allergy PSAs, too.  Maybe next year!

Special thanks to master organizers, Jenny Dare Mitchell Sprague of Multiple Food Allergy Help and HMO Woodrum of Oh Mah Deehness, and the many volunteers who made this conference happen.  The meals were delicious and allergy-friendly (thanks to the allergy-aware Chef Keith Norman),  accommodations were great, the variety and scale of sponsor freebies were mind-blowing (our suitcases overfloweth!), and everything ran smoothly.

It's been a growing struggle for Sarah and I to juggle our personal/family/work needs and commitments with blogging.  As our kids are getting older, we have gotten busier and busier and something has had to give -- and it won't be the care of our kids.  Sarah and I left the conference feeling reassured and inspired by all the spirited blogging and food allergy advocacy work going on in communities all across the country.  No matter how small or how often we blog, we are all helping food allergy families everyday by adding our voices and sharing together in this journey.

We are already looking forward to the next Food Allergy Bloggers Conference!

The Day Tristan's Food Allergies Went From Serious to Life Threatening

There's a reason I went pre-med at university but never went to med school.  During my first anatomy lab with the cadaver and the overpowering scent of formaldehyde, I knew I wasn't doctor material.  Or maybe it was making the first incision on the rat that was still warm in Bio 1A. Either way, the mere fact that I'm squeamish at the sight of blood should've tipped me off.  But obviously, I'm glutton for punishment.

The first time Tristan needed a shot of Epinephrine for an allergic reaction that I deemed "severe" enough to warrant an injection was also a huge turning point for me and for him.  Before that, I had been his biggest advocate, educating teachers, parents, family, and friends about his food allergies.  But I could always end our conversation in the statement: "He has an Epipen, but luckily, we've never had to use it."  I couldn't say this any more.

Now I end the conversation with, "He has Epinephrine, it's with him at all times, and whenever in doubt, give it to him.  Here's how..."

I've now lost count of the number of times I've injected him.  The first few times were adrenaline-filled, characterized by shaky hands and tears on both sides.  But after seeing the instant relief it has given him, I wonder why I ever hesitated.  Yes, it's hard to prick your child with a needle. Yes, it's inconvenient to go to the ER--nobody wants to spend an evening there when you were just a few hours away from tucking your little ones into bed.  Yes, it can save your child's life.

It's not as dramatic as the scene in Pulp Fiction; I'm definitely not in the habit of stabbing anyone in the heart with a needle.  That scene has likely scarred many of us for life.  Luckily for us, you just put the end of auto-injector on the outer thigh and push.  No one even ever has to see a needle.

It's not as bad as forcing your child to vomit because he's swallowed poison, or setting a bone back into place.  Think of it as throwing a drowning child a lifesaver.  You wouldn't stand on the pier, pondering whether your child is actually drowning, or if after a few more strokes he'll get the hang of it.  Even if you didn't know how to swim, you'd likely jump right in and do what you could.

So I know the majority of you are still in the "...but we've never had to use it" category.  And I hope with every ounce of my being that it stays that way.  But if you ever find your child in the need of Epinephrine, please please please don't hesitate to throw her a lifesaver.  Follow your doctor's advice about when to give it. I don't know how many times I've heard moms tell a story about treating their child's allergic reaction and ending with, "I didn't give the Epinephrine, but I probably should have."

In the wake of Natalie Giorgi and Giovanni Cipriano's deaths, and all those awesome food allergy resources out there about when to give Epinephrine, we need to rethink our action plans and make sure our caregivers are trained.

As an added bonus, Tristan has been injected with the new auto-injector the Auvi-Q, and swears that it doesn't hurt.  After one administration of the medicine, he asked, "Did the needle go in?"  I responded, "Do you feel better?"  He answered, "Yes!"  Well, there you go.  It's worth checking out, especially with the coupons out there.

I frequently think about how raising kids with food allergy is a process, and has a huge learning curve.  I don't know why it takes us so long to change our habits, take less risks, or be more vocal advocates.  What I do know is that I didn't sign up for this; otherwise, I'd have gone off to med school with likely a very different life.  Who knew a huge part of my life would be devoted to managing my child's life threatening medical condition?

Your courage rubs off on your kids.  So give the Epinephrine, and teach our kids what they need to know to grow up food allergic.

Nosh Homemade Bagels--free of dairy, egg, nuts, & cross contamination!

As many of you know, one of Tristan's favorite foods is bagels.  We kept our local Noah's Bagels in business until recently, when Tristan seemed to have generally more allergic reactions from packaged foods presumably due to cross contamination.  The reactions happened to coincide with the introduction of the drippy, gooey, peanut butter and jelly bagel at Noah's, and that was my last straw.

To say something for Noah's, we've eaten literally hundreds of bagels over the last 9 years of his life, and had never had an allergy issue.  But I didn't want to hang around and find out when our luck would run out.  So just recently, we stopped buying Noah's Bagels.

Well, we were passing by our local Noah's the other day and Tristan broke into tears, saying how sad he felt that he couldn't have bagels anymore.  They were one of the last food items I regularly bought him on the go--and they were gone.  The little things in the life of a food allergic child break my heart every day.

Fortunately, this turn of events also coincided with the arrival of our bread machine.  And our world, which felt closed and desolate to my three little carbivores (term coined by our friend Bella), suddenly opened up.  All sorts of bread, fresh pitas for sandwiches and hummus dipping, and now, bagels.  Who would've thought?

I found a recipe that looked tried and true for Bread Machine Bagels, and wanted to try them out right away--the ingredients were so simple and not unlike most of my bread machine recipes so far.  Bread flour and yeast are ingredients you will likely have to get to a store to purchase.  I found King's Bread Flour from my local Safeway.

Unfortunately, I put the ingredients in the machine, set to make the dough, did 17 other things, and forgot to put it in the fridge so I could make it the next day.  When I opened up the machine in the morning, the dough smelled sour.  Fermentation had definitely taken place.  Don't do this--major Pinterest fail.

The over-fermented bagels were inedible but it gave me some bagel rolling practice.  Watch a few seconds of this YouTube video of a Davidovich Bakery baker rolling bagels for some inspiration, then onto this Cooking Dish video for three methods to rolling a bagel.  It's essentially a twist and pinch method.  Alternatively, you could flatten a ball of dough and poke a hole in the middle.  I found the twist and pinch method easy enough.

The next day, I tried again, and this morning--fresh bagels!  Not so shabby.  If you're used to the size of Noah's bagels, you'll probably make about 4 bagels with this recipe instead of the batch of 9 specified on the original recipe. Instead of the egg wash, I used soy milk to glaze the tops, and increased the water a bit after others commented about this.  I'm excited to experiment with different fillers, but for now, here's the recipe for plain bagels:


Plain Bread Machine Bagels (NO dairy, egg, tree nuts, or peanuts)

Ingredients

1 1/8 cups warm water
1 1/2 teaspoons salt
2 tablespoons white sugar
3 cups bread flour
2 1/4 teaspoons active dry yeast
3 quarts boiling water
3 tablespoons white sugar
2 tablespoons of soy milk (or other safe milk)

Directions

1.  Pour water, salt, sugar, bread flour, and yeast into a bread machine according to manufacturer's instructions.  Start on dough setting.

2.  When the dough is done, boil the 3 quarts of water in a large pot with 3 tablespoons of sugar. Preheat the oven to 375 F.  Roll the dough into 4 to 9 bagels, depending on how big you want them.  Then set them to rest for 10 minutes while the water boils.

3.  Boil the bagels for 1 minute, then turn them over and boil for another minute.  Put them on a towel to dry.

4.  Transfer the bagels to a cookie pan lined with parchment, and brush the tops with the soy milk.

5.  Bake for 20 - 28 minutes until the tops are lightly browned.

Enjoy Life Soft Baked Bars: Chocolate Sunbutter & S'mores

Enjoy Life is one of the most prominent food brands designed for people with food allergies.  Its products are free of the 8 most common allergens (wheat, milk, egg, soy, peanuts, tree nuts, fish, shellfish).  They are also gluten-free and contain no genetically modified organisms (non-GMO).  

Get Allergy Wise was recently invited by Enjoy Life to try out their 100% Natural Decadence Bars, the company's newest line of allergy-friendly snacks.  These soft-baked bars come in boxes of five, perfect for sampling among Get Allergy Wise's collective brood of five kids.

The Natural Decadence bars are made in a dedicated facility that uses none of the top 8 allergens.  Most of Enjoy Life products are made in dedicated top-8 allergen-free facilities though you should double check your ingredient label (we always do anyway, right?) for specifics.  I say this because in the process of contacting Enjoy Life reps to verify the "freeness" of the bar-making facility, I was surprised to learn that the company's Plentils chips are made in a facility that also produces containing dairy.  The Plentils are made on a dedicated dairy-free line in a separate area of the facility but milk is handled elsewhere within the same facility.  I appreciated getting a prompt explanation from one of EJ's reps.  Batches of Enjoy Life products regularly go through testing for allergens to ensure that cross contamination has occurred.

We have our kids try two varieties of decadent bars, the chocolate sunbutter and the S'mores.  Oh, the sacrifices our kids make in the name of blogging!  We recorded their sometimes random comments below:

Our five Taste Testers:
T: 8 1/2 years old
R: 8 years old
L: 6 years old
C: 5 years old
A: 4 years old

First up: Enjoy Life Natural Decadence Chocolate Sunbutter Bars

How did the bars taste?  Did you like the flavor?
T: They were very chocolaty and melty.  The flavor was kinda too sweet for me.
R: They were sweet.  It was good and bad at the same time.  It was too sweet on some parts, and just right on others.
A: A little salty and sweet.  I liked them.
C: I liked it because the taste.  The taste means chocolate!
L: It's too good for me.  I like it very much!

What was the texture like?
T: It was sticky and they were very hard to chew.
R: It was bumpy and rough. 
A:  A little crunchy.

Where would you eat them?
T: Somewhere very cold like Antarctica because I didn't like the chocolate melting.
R: Anywhere.
A: At the playground.

When would you eat them?
T: At night because it is very cold and I like cold weather.
R: For dessert.
A: When would I eat what?  [The Sunbutter bars we were just talking about] Oh, lunch.

How do they compare to other snacks or bars you've eaten?
T: Compared to fruit, I didn't really like them.
R: Compared to Trader Joe's crunchy oats and honey granola bars (Irene's kids love these), I like the Enjoy Life ones.  They are 50/50 (meaning he likes them equally).

Would you recommend them to a friend?
T: I would tell some of my friends that are allergic to nuts that they might like it instead of having something else for a snack for lunch, breakfast, or a dessert at anytime.
R: Yes, cause they are very good.  

Next up: Enjoy Life Natural Decadence S'mores Bars

How does this S'mores bar taste compared to the Chocolate Sunbutter flavor?
L: I think I like the S'mores one more than the Sunbutter one because it's more chocolaty and I like chocolate.
T: I like this one better.  It tastes less chocolaty.
R: It tastes like chocolate.  I like it better, but both are good.
C: Good.  It's crunchy.  It's less chocolaty (than chocolate sunbutter bar).  It feels better.  The taste -- it feels better than the sunbutter bar.

Does it taste like a real (dairy-free) S'mores that you've had at camping?
C: Well, yes, it tastes a little bit like it.  It tastes like the graham cracker part.  It tastes pretty much like the marshmallow part.

Do you prefer the S'mores flavor, Chocolate Sunbutter flavor, or another type of bar?
C: I like the S'mores.

If we went to a birthday party, let's say I didn't bring you a safe cupcake.  How would you feel about eating one of these instead? 
C: Good!  I would eat it.


Irene also had a chance to sample the cinnamon bun flavor.  She liked the soft texture and the fact that there was no chocolate that might quickly melt all over her hands.  (Really, she's more concerned about chocolate all over her active boys' hands!)  While it didn't have the burst of cinnamon that one might expect from its name, the cinnamon bun bar was still tasty.  It had the most natural taste and reminded her of apple cinnamon oatmeal.  Although it contains slightly less sugar (11 grams per bar), the cinnamon bun bar didn't taste as sweet to her as the S'mores had.  The S'mores was a little too sweet for the grownups but the kids sure liked them!

Look for Enjoy Life Natural Decadence Bars in your local grocery and natural foods stores.  We have spotted them in Target stores, too.  We have seen them on shelves for roughly $5.00 per box of 5 bars.  These bars are not cheap --- but you are paying for the safety of snacks that are made in facilities completely free of the top 8 food allergens.  If you are a food allergy parent, you know from personal experience that feeding your family safely comes with a high price tag.  (If you are interested in more concrete figures, read a recent article about the cost of food allergies.)

My biggest hope for Enjoy Life bars is that they can find a way to fortify them with more vitamins, fiber, or protein without sacrificing their commitment to being safe of the top allergens.  I would love to see allergy-friendly bars that have the nutritional powerhouse of an energy bar!  Until then, our family will add Enjoy Life Natural Decadence Bars to the list of safe special treats to share with our other friends with food allergies or when I can't make a safe dessert myself.

Changes - the beginning of our school year

Callan was so excited to start Spanish Dual
Immersion Kindergarten.  He even said, "Adios"
to me when it was time to say goodbye.

The first weeks of school have come and gone for my kids.  I knew this would be a transition year with my 5-year-old starting Kindergarten.  However I still seemed to underestimate the stress and worry of preparing my kids for their new year.

School kids, allergies or not, will face some new circumstances with each new year.  The days leading up to the first day of school can definitely be anxious times for kids and their parents: Who will my teacher be?  Will I have friends in my class?  Will there be more homework this year?  Will everything be harder than last year?

When your child happens to have a life-threatening or lifestyle-changing condition like food allergies, the anxiety is amplified exponentially.  The questions above are still relevant but there are even more concerns:  How will my new friend react when he learns I can't sit near him because of this peanut butter?  Will my classmates wash their hands after lunch?  What if someone brings cupcakes to school?  What if I have a reaction at school?  Will my teachers know when I'm having a reaction?

As I always do before a new school year begins, I met with my kids' classroom teachers and the school nurse to review the kids' food allergy action plans (check out the most updated emergency care plan here).  This is a really important step to do every year.  Even if your kids will have the same teacher, same principal and staff, and same afterschool provider, it's critical to remind about your kids' allergies, possible symptoms, careful practices, and procedures during an anaphylactic reaction.  Teachers and staff take care of dozens, hundreds of kids each year.  They care about kids and want the school year to go safe and smooth for everyone.  They will appreciate the reminder that your child has some important, health needs and the review of emergency care procedures.

The recent tragic death of 13-year-old Natalie Giorgi prompted me to change a lot of ways in which I prepared our kids' school for possible allergic reactions.

1.  We revised our food allergy action plans.
Where once I had approved of Benadryl for reactions such as skin rashes, itchy nose and eyes, and sneezing, I have now changed the course of treatment to epinephrine for any symptoms beyond rash at the point of skin contact (nothing in or around the mouth) and any known bite or ingestion of an allergen even if a reaction does not develop.

My kids' classroom teachers now have but one course of action: an epinephrine injection.  This takes the responsibility away from teachers to make a judgment call on how severe an allergic reaction is.  Whatever the reaction, teachers should feel empowered to administer a dose of epinephrine, call 9-1-1, and then let medical professionals determine the nature of the reaction.  Receiving epinephrine when one doesn't really need it has minimal side effects: increased heart rate, jittery/restless behavior.  However, not receiving epinephrine when it is necessary can result in injury or death.  In fact, research points to the under-use or late administration of life-saving epinephrine as a prime factor in why individuals do not survive anaphylactic reactions.

Note: there is now an easier-to-read, picture-assisted food allergy & anaphylaxis emergency care plan.  If you have not created a plan with your child's doctor, definitely use the new form.

Ryken hardly notices the extra weight from wearing
his medication. I however notice the difference in
my lighter purse!

2.  My 8-year-old now self-carries his epinephrine injectors.  
In the past, I had been hesitant about having Ryken carry his own medication.  I feared he wasn't ready: that (1) he might lose them,  (2) he might somehow break them, or (3) the injectors might become toys and get accidentally administered in the hijinks among friends.

We have had open, honest conversations with Ryken about the dangers of food allergies since he was a toddler.  Granted, the exact words have changed over time -- at 2 we explained that milk and nut products would make him very, very sick and might have to get a shot and go to the hospital; at 8, we discuss with him the details about tragic deaths related to food allergies such as Natalie Giorgi, who died from accidentally biting into a dessert with peanuts.  I do not believe in shielding my kids from the idea that they could die from a small mistake.  Death is scary but it is a real possibility.  In contrast, I believe that the more my kids are aware and educated  -- much like spreading awareness in their school and friend communities -- the more empowered and vigilant they will be to make safe choices when they are not in my immediate care.

This upfront, continuous dialogue has helped Ryken understand and remember to label-read and hand-wash, avoid sharing foods and take precaution in situations where cross contamination might occur.  He is ready for the responsibility and very much wanting to carry it himself.   He does not fear having the medication on him anymore but, instead, sees the importance of having it as close to him as possible.  We have had good talks about his past symptoms.  I've had him reflect on past reactions and recall memories of when he *knew* -- when an alarm went off in his head -- that told him he was having an allergic reaction.

So we filled out the required paperwork with doctor and school nurse that authorizes Ryken to self-carry his Auvi-Q twin set.  Like a champ, he remembers to strap on his waist pack every morning of school.  He chose bright red because he wants it easy to identify for anyone who might need to assist him in case of an emergency.  To prevent from losing the pack, we designated one place (Ryken's backpack) where it will always be kept when Ryken isn't wearing it.  So far, Ryken has worn it even on the days when I have forgotten to remind him!

3.  We have switched to Auvi-Q as our epinephrine injectors.  
Earlier his year Auvi-Q entered the epinephrine auto-injector market that was previously dominated by the EpiPen.  My family had a chance to check out Sarah's set, practice with the trainer, and talk to Sarah's son Tristan who has had to have the Auvi-Q this summer and most recently and unfortunately at school for food-related allergic reactions.

The Auvi-Q's most unique feature are the audio commands that walk you through the process of administering the injection.  Seriously, it's a brilliant feature that will enable anyone who understands English to use it.

We also liked the Auvi-Q's compact size and simple design.  It is smaller than the EpiPen, doesn't appear as frightening to those fearing needles, and there's no mistaking where the needle will come out for the injection.  Because it isn't as long as the EpiPen, it was easier for my kids to grip with stability.  They quickly became experts at using the trainer.

Third, Tristan's positive experiences with the Auvi-Q convinced us this was a drug worth trying.  Tristan didn't feel any pain from receiving the shot -- he went so far as to insist that there was no shot, no needle.   He has had the Auvi-Q on 4 occasions and has not complained about the pain.  On his 4th time having the Auvi-Q, he administered the injection himself.  Sarah believes that Tristan was able to do this because his past Auvi-Q shots did not hurt, so he wasn't scared at all.

I have trained teachers and coaches on both the EpiPen and Auvi-Q and, I have to say, I see their relief in hearing the device instructing them and how easy it is to hold and press to activate the injection.  Overall, I think the ease of administering the Auvi-Q will keep my kids safer.

If you have not checked out Auvi-Q, talk to your allergist or pediatrician about it.  (Your allergist may have a trainer that you can check out!)  I recommend calling your insurance company to see if it is a covered medication.

4. We have sets of epinephrine in more places at school.
In the beginning of the year, I met with the school nurse who splits her time between three school sites within the district.  I appreciate her understanding of food allergies, her support of self-carrying and the Auvi-Q, but the thing is she is only at our school site two days a week.  California districts have really axed school nurse hours -- Sarah's kids do not have any school nurses on campus ever in her entire district!  It's really awful policy that California schools have had to deal with for many years now.

Anyway, without a main person with expertise on food allergies at the school site full-time, I decided to use Auvi-Q's $0 Co-Pay coupon to get sets of medication that follow the kids wherever they are at school.  So there are sets for each of my kids in the main office; sets in their classroom; one set that Ryken wears; and one set that the Kindergarten lunch/yard duty teacher always carries with her.  Having access to medication at all times makes me feel much better.   My kids will be exposed to the most food at recess and lunch.  And the yard/lunch staff have to watch so many kids that they might not be able to step away immediately to retrieve emergency medications from the office.

I am so grateful for the growing competition between EpiPen and Auvi-Q.  To bolster their fanbase, the makers of both EpiPen and Auvi-Q have special offers running until the end of 2013 that potentially reduce your co-pay for their injectors down to $0.  (This depends on your insurance.)  Regardless of which medication you prefer, do check out the coupons.  You might be able to arm your kids' classrooms, lunchrooms, and main offices with more epinephrine injectors at no or minimal cost to you.


What are some changes that you have made in getting ready for the new school year?