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.