Food Allergy Stuff I Need

As we're in the midst of Food Allergy Awareness Week, I'm reminded how our food allergy journey began 12 years ago this very month. May 2001 was when we got the results- allergic to dairy, eggs, peanuts, tree nuts, soy, corn, oats, wheat and shellfish. We were told, "go pick up your EpiPen at CVS. We've already called it in. Don't give (your baby) any of the aforementioned foods and be careful about cross-contamination."

Huh?!?! Sure, I'd heard that some people had a peanut allergy, although I didn't know anyone personally. I had no idea anyone could be allergic to so many foods...plus, I thought food allergies were hereditary!

So, fast forward 12 years and the numbers of allergies has decreased and my knowledge and support base has increased- a hundred fold. As I celebrate Food Allergy Awareness Week, here's a list of the the stuff that helped me along the way:

• FARE- back then it was FAAN- but my membership to this group was worth its weight in gold as I quickly learned that there were lots of people with food allergies and there were lots of ways to successfully cope with food allergies. I found support and hope through their conferences and continue to appreciate their efforts to educate and inform while seeking out treatments and cures.
• Linda Coss's cookbooks, What's to Eat and What Else is to Eat taught me how to make food my whole family would eat. Food Allergy Mama's Baking Book allowed me to bring desserts to parties and events that were safe and delicious.
  
• EpiPen (and now Auvi-Q) are critical tools in our food allergy kit. Benadryl, and our Food Allergy Action Plan round out that portable kit.
• The Food Allergen Labeling Law of 2004 provided consistency and accuracy where there formerly was none.
• A bigger selection of safe foods at the grocery store- soy milk, soy nut butter, dairy free margarine and chocolate chips.
  
   
• Food allergy bloggers (check out my sidebar for a few of my favorites) have given information and support all along the way. Twelve years ago there weren't many of us on the web sharing our stories. Today there are many who give their time and talents daily to keep those new and old to food allergies informed and hopeful.
• Allergists, doctors, nurses, teachers, coaches and others who have been respectful and caring about food allergies along the way.

Join us this evening at 7 pm for a food allergy Twitter party to celebrate how far we've come and where we are headed. Use #foodallergy to join in the fun!

EpiPen With Zero Copay

EpiPen

Mylan, is one of the world’s leading generics and specialty pharmaceutical companies, and is also the maker of EpiPen^®

The company is celebrating 25 years of the auto-injector that is used to treat anaphylaxis due to a severe allergic reaction. The celebration means a $0 copay for families through December 31, 2013. This offer is valid for up to three EpiPen 2-Pak cartons or EpiPen Jr 2-Pak cartons per prescription, with an unlimited number of prescriptions until the end of the year. Before you go fill your next EpiPen prescription, head on over to Epipen.com and request a coupon for your $0 co-pay. 

I know this will benefit many of you who have no insurance coverage for auto-injectors or those of us who rack up a big bill on co-pays for multiple injectors.

Lemon Blueberry Cake- Yum!

This celebration calls for some cake. How about some dairy and wheat-free, egg-free, nut and peanut free cake?  

I do love a celebration!

Date Change for Philadelphia Food Allergy Walk

Walking for a Good Cause

The date for the Philadelphia area Food Allergy Walk has been changed to Sunday, September 22, 2013. For walk dates in other locations, check the F.A.R.E. Walk for Food Allergy website. 

Love the slogan, Help Us Say FAREwell to Food Allergies". There are over 65 walks planned in the U.S. this year and 40,000 plus are expected to walk for food allergy. Are you one of them?

Flying With Food Allergies

Travel with Food Allergy

If you're booking a flight for vacation travel this summer, you may want to be aware of a recent study about food allergies and airplane travel. In a March 2013 article published in the Journal of Allergy and Clinical Immunology, researchers shared their findings when they set out to characterize the experience of persons with peanut and tree nut allergy who report in-flight allergic reactions. They also compared pre-flight and in-flight behavior between persons reporting and not reporting a reaction to determine whether any behaviors may be associated with safer flying.

The results come from a survey that was accessed and completed by 3273 persons- mostly parents of peanut and tree nut allergic children. 

More than 10% of respondents reported experiencing a reaction during a flight.

How's that for a frightening statistic?

It goes on to share:

• 13% of those people who experienced a reaction received epinephrine
• peanut was the attributed cause in 69.5% of the reactions
• the crew was notified of the in-flight reaction in only 50.1% of cases
• Airline policy on handling in-flight reactions to peanut and tree nut allergies has been inconsistent between different carriers and nations.

We have successfully flown many times with food allergies. We've always notified the airline in advance of our food allergy and need for accommodations. This study pointed out that fewer reactions occurred for those people who took "risk-mitigating behaviors". Here are the behaviors found by the study that may help decrease the chances of having an in-flight reaction:

• making any request of the airline (in other words, tell the airline about your allergy and what you need)
• requesting a buffer zone
• requesting an announcement that passengers not eat peanut/tree nut–containing goods
• requesting a peanut/tree nut–free meal
•  wiping the tray table (we also wipe the seat and arm rests)
•  bringing own food from home
•  avoiding use of an airline-provided pillow
• avoiding use of an airline-provided blanket

Of course, always carrying your own epinephrine injector (make that two injectors) is also critical. We have a note from our allergist stating that we need to carry life-saving medicine on-board so we don't have any last minute problems getting through security.

The study did note that "one single US carrier was associated with 63 reported reactions (18.1%)". That airline remained unnamed (hmmm....now I'm very curious!) Canada is the only country where a government agency has directly intervened, recently ordering Air Canada (but not other Canadian carriers) to establish a peanut/nut-free buffer zone, on specific request within 48 hours of departure. To date, the US Department of Transportation,has stated that it would not involve itself in the peanut/airline issue.

That means it's up to us. Carry your own food and medication and use the above listed risk-mitigating behaviors when you fly. You can successfully travel by plane with food allergies by being prepared and preparing in advance.

Wishing you happy and safe travels! Feel free to share your personal experiences in the comments below.

One Doctor's Quest to Help Kids With Food Allergies

March 10, 2013 New York Times Magazine

Did you get a chance to read the NY Times piece, The Allergy Buster, by Melanie Thernstrom (an allergy mom herself)? Honestly, I couldn't put it down and I'm thrilled to see a piece like this on the cover of the NY Times Magazine. 

The article features Dr. Kari Nadeau, a Stanford doc with strong convictions about helping kids with multiple food allergies. Dr. Nadeau wrote 13 Investigational New Drug applications (90 pages each!) for the FDA while she was sick, went without a salary for 3 years, and allows patients to call her when she is away on family vacations. Her trial to desensitize children with multiple food allergies spawned the group, Safar Community Council. They raise money and hold meetings for food allergy research.

Allergies to Milk, Eggs, Nuts

Since the article left me still hungry for more information on this possible treatment, I was happy to discover two other related pieces. The NY Times Blog posted a Behind the Cover Story interview with the author of the article and Dr. Nadeau herself is taking questions to be answered in a future Stanford medical journal. Questions may be sent through Twitter, using the hashtag #AskSUMed, or by posting a comment on Scope, the Stanford journal.

I long for the day, as the author pointed out, when food allergies and fatal anaphylaxis are associated with an earlier age, like dying of polio. Until then, we need more people like Dr. Nadeau willing to do the  research, work closely with patients and families and demanding more from our science and medical communities. We also need brave families and people with food allergies to participate in research and trials. That's a tough, and very personal choice, but it's the research and trials that will eventually lead to a cure.

Fifteen million Americans have food allergies. The number keeps rising and we don't know why. Patients and families deserve better, and more consistent, answers- now and for future generations.

Consider Body Weight When Using an Epinephrine Injector

EpiPen Injector

When a person experiences anaphylaxis, a life threatening reaction to foods, bees, latex or other causes, the best course of action is to administer epinephrine quickly and effectively. Typically, this means using an epinephrine auto-injector (like an EpiPen or Auvi-Q) and injecting into the side of the upper leg.

A recent study conducted in the U.K. found that the injection site may vary depending upon body weight. Using ultrasound to take skin surface to muscle depth measurements, researchers found that higher weight and waist circumference were linked to a skin surface to muscle depth measurement greater than the length of the auto-injector needle. This means the epinephrine was not getting into the muscle where it would be more rapidly absorbed.

The study concluded that it may be beneficial to inject further down the leg where skin surface to muscle depth surpassed the length of the auto-injector needle for a majority of kids. 

Auvi-Q Auto Injector

Talk to your doctor (and share the press release, Injecting Epinephrine into the Lower Rather Than Upper Thigh May Be More Effective in Overweight Children) if you have concerns about weight and the effectiveness of an epinephrine injector. Make sure that the prescribed auto-injector user and all caregivers are aware of the best place to administer the injection to maximize the benefits of the medication.

Lower Weight and BMI Linked to Food Allergies

Food Allergies and Low Weight

A recent study of 245 food allergic children found that children with food allergies had lower percentiles for weight, height and BMI compared to age-matched "healthy" children. 

The information about this study was presented at the annual conference of the America Academy of Allergy, Asthma and Immunology (AAAAI). The study went further and looked at the relationship between growth and the number of food allergies.

No surprise here...children with a greater number of food allergies had lower height and weight percentiles. 

Dairy Allergy

More specifically, multiple food allergies and/or milk allergy was found to result in the lowest percentiles.

“The relationships uncovered between food allergic children,particularly those with more than two and those suffering from milk allergy, and the examined growth markers stress the need for nutritional assessment and intervention to ensure that food allergies do not contribute to any growth delay,” explained AAAAI President and study author A.Wesley Burks, MD, FAAAAI. 

I hope this also highlights the need for food allergy savvy nutritionists. We've visited two nutritionists recommended by our allergist. Both left me wondering why I was the one writing the check after I was told by the professionals, "Wow, you taught me a lot. I had no idea!"

Over the years, I've tried to enrich foods whenever possible by incorporating soy flour in my baked goods, adding almonds to recipes or using flax as an egg substitute. Fortunately many of the rice and soy milks now come enriched with calcium and Vitamin D. 

It's enough to worry about keeping our kids safe by avoiding allergens. Now we must also face what that avoidance is doing to their physical growth and development.

Sigh....

Do you have ways to sneak in some extra nutrients into your food allergic child's diet? 
Have you observed a correlation between food allergies and the impact on growth? 

You can check out the press release from AAAAI about this study for more information. 

Make Some Dairy and Egg- Free Doughnuts This Week-end

Allergy-Friendly Doughnuts

Around here, Fat Tuesday is also known as Fastnacht Day, so I just had to try making some doughnuts last week. While I have a doughnut pan and have baked doughnuts in the past, this year I decided to try the real fried (oh so healthy) kind. I found an eggless doughnut recipe online and converted it to meet our egg-free and dairy free needs. If you've got a craving for a great doughnut this week-end, look no further:

Egg and Dairy- Free Doughnuts

• 1 cup lukewarm soy milk (I heated it a bit in the microwave)
• 4 tsp yeast
• 1/3 cup plus 1 TBS sugar
• 2 cups flour
• 2 TBS butter, room temperature (I used Fleishmann's unsalted sticks)
• 1 tsp salt
• 1 tsp vanilla extract

Directions:

1. Mix the yeast into the lukewarm soy milk. Add 1 TBS granulated sugar and mix it up. Put flour, 1/3 cup sugar and salt in a separate bowl. Mix in the yeast concoction and add the vanilla. 
2. Knead (I used my KitchenAid with dough hook) gently until a smooth, soft dough forms.
3. Add the softened butter and knead 3 more minutes.
4. Cover the bowl and allow dough to rise and double in size (about one hour).
5. After dough has risen, knead again lightly and turn it out on a well-floured surface. Keep lots of flour on-hand (literally!) as this dough is super sticky.
6. Use a rolling pin to roll dough out to about 1/2 inch thickness and take a 3 inch biscuit cutter (I just used a wide glass) to cut out donuts. I took a plastic water bottle cap and cut out the hole in the center and added that back into my dough. Use the last hole as your "fry tester" when it comes time to fry the oil.
7. Let the doughnuts rise again for about 30 minutes, covering with a towel or plastic wrap. Try not to let the cover touch the dough. I used toothpicks to keep the cover propped up.
8. When the doughnuts have doubled in size, you are ready to fry them. Pour oil (I used canola) into a sturdy pot and bring to frying temperature. I have a candy thermometer that indicated the proper temperature, but you can  use the "fry tester" to find out if it's hot enough. If it floats to the top immediately, you're good to go.
9. Immerse each doughnut into the hot oil. They will float up and brown in seconds. Keep flipping them and remove from the oil when they are golden brown. This all really happens fast. I just did one doughnut at a time.
10. Place doughnuts on paper towels to absorb oil.

I then put some confectioner's sugar in one zip top bag and cinnamon and granulated sugar in another.  I shook the doughnuts that I knew we would eat immediately in the toppings.

Yum! Warm doughnuts!

The rest of the doughnuts I froze without topping. We defrost some and shake them in the topping bag as we're ready to eat them.

Unfortunately, this week I've had to increase my treadmill time after all the doughnuts last week.

But it's been worth it...yes it has...

Big Merger Brings Allergies and Asthma Organizations Together

Conference call KFA/AAFA

The merger of U.S. Air and American Airlines has been in the news all week as it will form the world's largest airline. 

News of a merger in the asthma and allergy community brings two well-known organizations together to provide a joint mission – keeping children and families safe and healthy for a "life without limits."

In a conference call yesterday, Kids With Food Allergies (KFA) founder Lynda Mitchell and The Asthma and Allergy Foundation of America (AAFA) CEO and president Bill McLin shared the merger news of their organizations. They explained that by bringing the two organizations together, they can tap into the current programming and services of both to do more for the asthma and allergy communities.

During the call, leaders from both groups went on to explain that KFA will become a division of AAFA. There will be one board of directors, with several KFA board members now serving on the combined board. Both will still maintain their own websites, social media channels and fundraising efforts.

I believe this merger helps food allergy families because it brings together a long established organization that has been an advocate for policy related to asthma and allergic diseases, with a group that supports and educates food allergy families and has the largest online support community for families raising children with food allergies. 

I look forward to more research, more policy efforts, continued education, and support from this merger. We know that many of the same kids and adults with allergies- be it to dust, food, ragweed, etc.- also deal with asthma issues. Congratulations to AAFAand KFA for bringing together two important pieces of the asthma, allergy and anaphylaxis puzzle to create a stronger whole.

For more information on the merger check out AAFA's website and KFA's website for the press release and FAQ's.

Is It Worth It To Dine Out With Food Allergies?

Photo Credit: Noel Malcolm

We don't eat out often. Frankly, I try to avoid it. I keep hoping my child's food allergies will go away and I won't have to worry about food allergies and dining out.


Dumb, I know...but the whole restaurant thing still feels scary and intimidating to me. So much can go wrong. Now, we have had several great restaurant experiences (McDonald's, Universal Studios, The Strand Bistro) and a couple of bad experiences. 

Mostly good, though...

Photo Credit: Noel Malcolm

Last Saturday, we thought we should get brave and have dinner out. I immediately went to AllergyEats and typed in our zip code. Several recommended options popped up. We checked out on-line menus and discussed the options.

Then, I noticed that it was 5 pm...on a Saturday night...

"Try to dine out during off-peak hours" is advice I've heard over and over. Not heeding that advice has led to some of those bad experiences. 

We ate dinner at home that night, but I've resolved that we will eat out locally once a month so all of us get comfortable communicating with wait-staff, chefs and managers. 

This is why I was so excited to see the results of the Allergy Eats survey of the most food allergy-friendly restaurant chains based on diner feedback (as in real people who care about food allergy concerns when dining out). The most recommended large chain  restaurants were (in order), Red Robin, PF Chang's, Chipolte, Outback Steakhouse and Longhorn Steakhouse.

A few comments as I explored these restaurant websites:

• Red Robin - while they offer a recommended menu for those with wheat/gluten allergies online, they suggest you send any other allergy questions through their comment page. Hmmmmm...
• P.F. Chang’s- their wait-staff automatically asks if anyone at the table has any food allergies and their nutritional information on-line does say they "will do their best to accommodate" food allergy needs.
• Chipotle -has a Special Diet Information page- Like!
• Outback Steakhouse - offers a gluten free menu on-line, but I couldn't locate any other allergen info on their site.
• Longhorn Steakhouse-has a gluten sensitive menu on-line, but I was unable to find any other info on their site about food allergens.

The most recommended medium chain restaurants (between 50-200 locations)  from the Allergy Eats survey were, Bonefish Grill, Ninety Nine, Zpizza, Uno's, and Bertucci’s.

I also took a look at their on-line allergen info:

•  Bonefish Grill - has a Wellness tab on their site and talks about offering a gluten free menu in their restaurants for those with celiac or an intolerance to gluten. No other food allergy information found on-line.
• Ninety Nine -  has an on-line pdf that lists the top 8 allergens in every menu item- Awesome! They also have a gluten-free menu.
• Zpizza - offers gluten-free crust and vegan cheese (with ingredients listed for both).
• Uno's Chicago Grill - has nutrition information AND INGREDIENTS (perfect!) for every menu item. Also, under nutrition information there is a page about food allergies as well as advice to diners to alert their server of food allergies prior to ordering. A list of gluten-free menu items can also be found.
• Bertucci’s - has a gluten free menu and asks diners to alert their server if they have any food allergies.

I hope to see more allergen information on-line for those of us who want to check out menus from home or on our devices while traveling.  I do believe that most restaurants are "getting it" in terms of serving people with food allergies, but more information is always helpful so we can make the safest choices for our families.

Check out Allergy Eats for smaller restaurants that made the recommended list and be sure to rate your restaurant experiences at the site so we can all benefit from the ratings.

Are any of the recommended restaurants your go-to favorites?

Food Allergy Reactions on Valentine's Day

Candy Heart Molds

A recent survey sponsored by Mylan Specialty indicated that as many as one in three parents report their children with life-threatening allergies have experienced anaphylaxis on Valentine’s Day. This scary statistic underlines the importance of talking to kids before this Thursday's holiday.

Pre-School and Elementary-Age Children- Parents should talk to teachers and staff early this week about special events planned to celebrate Valentine's Day. From classroom parties and crafts, to food sent in for school parties, peanuts, tree nuts, chocolate and baked goods may be prominently featured. Remind young children about your food allergy rules (no eating anything unless it's been approved, checking with a safe adult if unsure, etc.) and make sure they are aware that Valentine's Day may mean that things are different at school this Thursday. Consider role-playing as a way to help them feel comfortable dealing with specific situations.

Teens and Young Adults- While classroom parties may be less of an issue at the middle school and high school levels, there are important reminders for this group too. Sometimes friends exchange Valentine treats and it may be tempting for a young person to "try a bit". This age group is particularly susceptible to food allergy emergencies because they want to fit in...they don't want to feel different. Again, talk to them before Thursday about your food allergy rules (no eating anything unless the label has been checked, carrying their medicine at all times, etc.). 

Food allergy reactions have been linked to kissing, so if you haven't had THE CONVERSATION yet, talking to your teen about dating and kissing near Valentine's Day may be appropriate.

Heart-Shaped Cake Pan

A little planning (and talking) early this week will help you and your family enjoy a safe Valentine's Day this Thursday.

Is your child's school still celebrating Valentine's Day with traditional parties and treats?

EpiPen vs Auvi-Q...And I Mean That in the Nicest Way

EpiPen and Auvi-Q

We now have EpiPens and Auvi-Q's in our house. Of course this may not work for every household. It could be confusing for younger children to have two different epinephrine devices. It may be disorienting to some caregivers. But, for us, it works to have both. There are times when it's easier for me to fit Auvi-Q in my favorite small purse. 

Other times, the shape of the EpiPen works better. 

Size of Auvi-Q

But, what I most appreciate is having choice. EpiPen is celebrating its 25th birthday this year. While we've seen a few other devices designed to treat anaphylaxis over the years (think Twinject and Adrenaclick), we haven't seen any new innovation- until Auvi-Q came on the market last week. The shape is remarkably different than anything else we've seen and a voice talks the user through the procedure, much as a defibrillator (AED) does.

When I called my doctor's office earlier this week to ask for an Auvi-Q prescription, they said, "Would you spell that please?" A nurse called back a short time later to say that they had a training on Auvi-Q coming up in a few days and that they didn't yet have the prescription information entered in their computer. They manually called in my prescription to Target. 

I'm also sending in some trainers to the director of our school nurses so she can share it at next week's nursing staff meeting. It's important to tell schools, daycares, babysitters and others if you've got an Auvi-Q for your child as they may search for the traditional shape of an EpiPen.

Price of the new Auvi-Q has been a hot topic. Each prescription comes with two devices and a trainer. I paid $72.74 for my prescription that was covered by insurance. By comparison, I pay $48.43 for EpiPen. This time, I only paid $25 for Auvi-Q because I printed a coupon. The coupon can be used twice and offers a $25 co-pay for prescriptions covered by insurance, or $60 off for self-pay customers. Honestly, that is a greater price difference than I expected. Our new Auvi-Q devices don't expire until April 2014, but as our EpiPens expire, we'll need to decide if the extra cost is worth it to us.

We need companies like Mylan and Sanofi and we need independent inventors like the Edwards brothers to keep us informed and to bring innovation and choice. Until the day finally comes when we no longer need to fear food, bees, latex and anything else that may lead to anaphylaxis, there's room for pioneers and options.   

Auvi-Q Prescription

 Will you have both devices in your house?

Food Allergy Blogger Summit

Last week I had the honor of mixing with a great  group of food allergy educators and advocates in New York City.  Lauren Kashtan of Mylan Specialty hosted our event and we had the opportunity to hear from Dr. Ruchi Gupta and  Sloane Miller (Allergic Girl) in separate presentations. 

There is such a warmth and joy in meeting "in-person". We were 16 bloggers and food allergy parents who all "knew" one another online, but sitting together and enjoying meals and talking directly to one another really was, well...priceless. 

And, let's talk about those meals for a moment. Chef Kelvin prepared the most delicious dishes for us. Several in the group deal with their own food allergies, so the ingredients for each dish were clearly labeled and the servers were ready and able to make sure everyone got a safe meal. The salad was delish, the ribs at dinner just melted in your mouth, and the chocolate cake...well, it was simply a little slice of heaven. Food allergy families should feel very comfortable eating from Chef Kelvin's kitchen. If you've got a New York City trip planned, talk to Kelvin (kfernandez@thestrandnyc.com) before you arrive and let him help you plan a great meal at The Strand Hotel.

I took lots of notes during the scheduled sessions and I'd love to share the ones that jump out at me:

• EpiPen turns 25 this year. It was approved in December 1987. Isn't it hard to imagine managing food allergies without having EpiPen?
• Over 20,000 schools are participating in the EpiPen4Schools program.
• Chicago schools used the slogan, "We're Prepared, Are You?" when rolling out their EpiPen4Schools program. This was an effort to ensure that parents continued to send in their child's medications and didn't rely on the school to have it.
• "Anyone can be allergic to anything at any time."- Dr. Gupta
• "I will not eat for someone, ever." -Sloane Miller
• People with food allergies need to communicate (about their allergies) in a clear and factual way. Be firm in tone, without question and without apology." (This is also from Sloane.)
• Parents need to gradually allow their growing food allergic children to own their food allergies. They need to be given opportunities to speak to their allergists, to restaurant staff, teachers, friends and others so they have practice in communicating and feel comfortable doing it as adults. (This is what I took from Sloane's talk). 
• "We finally have better insurance reimbursement for food challenges," said Dr. Gupta. The hope is that this will result in more allergists conducting food challenges, the gold standard in food allergy diagnosis.
• 30% of anaphylaxis has no skin symptoms (hives, redness, etc.) (Dr. Gupta)
• Using an EpiPen is a hard decision, more so because we are aware of the chain reaction that follows- ambulance, hospital, waiting to see if there will be a bi-phasic reaction. We had a great (and sometimes emotional) discussion around this. We wondered, could there be an anaphylaxis hotline to help provide support?
• Everyone at risk needs an anaphylaxis action plan. Talk to your doctor to come up with a plan that works and then make sure that everyone is aware of the steps to take.

A huge THANK YOU to Mylan for sponsoring this event, to our speakers (including Ritesh Patel who conducted a fantastic blogging workshop), to The Strand Hotel (especially Chef Kelvin and his restaurant staff) and to  my fellow attendees: Caroline of Grateful Foodie, Ruth from Best Allergy Sites, Cybele Pascal of The Allergy Friendly Cook, Tracy from AllergyPhoods, Elizabeth  - Easy Breezy Life, Missy  - The Marketing Mama, Heidi - Brooklyn Allergy Mom, Jenny - Multiple Food Allergy Help, Libby from The Allergic Kid, Lisa from No Nuts Moms, Irene and Sarah - Get Allergy Wise,, ,  Kelly- Food Allergy Mama, Kimberly- The Food Allergy Mom, and Lindsey Steffensen - Frugal Food Allergies.

We'll always have the Rooftop...

Best Advice From an Allergist and Immunologist Specialist

Epinephrine

"Use epinephrine early and often," was the message from Dr. John Oppenheimer, an allergist and immunologist from UMDNJ. I recently had the pleasure of hearing Dr. Oppenheimer speak and I was struck by a story he shared. He told us that his wife asked him why he often shouts into the phone, "Use it! Use it now!" That's the urgent plea from Dr. Oppenheimer when a parent or school nurse calls his on-call service wondering if they should use an epinephrine auto-injector for someone they suspect may be having an allergic reaction.  

"Use it" means "administer epinephrine now".

I've been there. When my child has said, "My mouth feels itchy", or "I'm getting a hive on my lip," I've grabbed the bottle of Benadryl in one hand and the epinephrine in the other and watched closely. Who wants to stick a needle in a child and call an ambulance unless it's absolutely necessary?

According to Dr. Oppenheimer, use of epinephrine early in the anaphylaxis state may diminish the effect of late-stage anaphylaxis. He said that anaphylaxis is under-diagnosed and under-treated and he made it clear that the first line of defense is epinephrine, not an antihistamine, when an anaphylactic reaction is starting.

He shared that the triggers for anaphylaxis are Food (33% of the time), Unknown (25%), Insect (19%), Medications (14%), Other (9%, includes cat dander, latex, cleaning agents, etc.). 

For me, Dr. Oppenheimer's talk was another good reminder. One quarter of the time, an anaphylactic reaction has an unknown cause. An antihistamine is not effective at halting anaphylaxis. While no one wants to use an epinephrine injector, it is our best defense against anaphylaxis.

It is comforting to be able to reach an on-call doc in a moment of uncertainty and panic. Call your doctor if you have the time. If not, talk to your doctor now, so you have a plan in place if an anaphylactic reaction occurs. 

Auvi-Q Epinephrine Injector is Coming

Auvi-Q Epinephrine Injector

I first posted about a credit card sized epinephrine auto injector over two years ago. In a December 2009 post, I wrote about two brothers and their company Intelliject. I was most excited about the potential for this new product for teens and young adults. This age group often doesn't carry their epi injectors because it's "inconvenient". An injector smaller than a cell phone- now that sounded convenient.

Fast forward to last week when I had the opportunity to see this new product. I was invited to Sanofi's U.S. headquarters in N.J. to see Auvi-Q^® up close and to provide feedback to the team that has been working on bringing this product to the market. It was a fun day for me as I had an opportunity to hear from Dr. John Oppenheimer on the current state of anaphylaxis (more on that later this week). I also got a history lesson on the new product and shared lunch with some fellow food allergy advocates.

Auvi-Q is short for Audio Visual Cues. As the name suggests, the device carries both visual and audio instructions for use. As soon as it is pulled from the case, a friendly and calm voice begins walking the user through the steps. Here's what I really like about this product:

• the size- it's even littler than I expected and is smaller than my smartphone. My tween really liked the shape and size.
• the audio helper- everyone is nervous about having to use an auto-injector device. A voice guide really decreases anxiety.
• no need to swing device into outer thigh- with Auvi-Q, the user places the device on the outer thigh and pushes firmly.
• hidden needle- the needle in this injector goes into the leg and within one second retracts back into the device. There was always something about having to withdraw the needle that was unsettling. No accidental needle pricks to worry about here either!
• has been waterproof tested- the product can sustain some water and still operate effectively. It does contain a battery for the voice recording, but even if the battery no longer works, the injector itself will still operate and release the medicine.

Here's a little amateur video we made to show how easy it is to use:

Auvi-Q is FDA approved and scheduled to go on the market in the U.S. by the end of March 2013. At this time, the cost of the device is unknown, however, two active devices and one trainer will be the norm for prescriptions. Many epinephrine injector rules will remain the same, such as approximately one year expiration dates, a viewing window to ensure the medicine is a clear color, two different dosages depending on body weight and the need to be aware of temperature extremes.

Check out what some other food allergy bloggers are saying about Auvi-Q:
Grateful Foodie- Inspiring- We Met the Auvi-Q
AsthmaAllergiesChildren- Thoughts About the New Auto-Injector
Multiple Food Allergy Help- Auvi-Q Epinephrine
Amazing and Atopic- The Audio Visual Lifesaver 
Learning to Eat Allergen Free- AuviQ is Coming Soon

You can sign up to find out when Auvi-Q will be available, or keep an eye on Food Allergy Assistant for further updates. Let me know if you have any questions or comments. I am thrilled to have more options in the toolbox for managing food allergies and anaphylaxis.

Full disclosure: My travel expenses and lunch were covered by Sanofi, although I am under no obligation to review this product...but I just wanted to!