An article published earlier this month indicated that a recent UK study shows that food allergic children and their families feel isolated, stigmatized and unfairly excluded. To read the total article, you can link here: http://www.huffingtonpost.com/2011/08/17/kids-nut-allergy-teased-excluded_n_929809.html

I would have to say that overall, we’ve been lucky not to have many issues happen with our allergic child but that doesn’t mean that they haven’t been there. There was the time that a good buddy at school told our child that she couldn’t have her to her birthday party because her mom didn’t want to deal with her peanut allergy. It took all of my strength not to phone that mom and have a little discussion. I didn’t in the end since I didn’t really think it would change anything except mortify my child even further.

There was also the time that one child wiped his hands down all of the bus seats as he got on the bus, telling everyone that he’d just had peanut butter. We were really pleased with how that got handled by the students on the bus themselves, many who had been riding that bus with our daughter for years and were very protective of her. Every child on that bus turned on that young man and kicked him off until he spoke to the bus driver. We then let the principal know when our child got home and told us what happened but peer pressure really made the difference that day. He never tried anything like that again.

But it’s also the incidents that aren’t so easy to quantify; when everybody else gets the birthday treat in the classroom or someone’s sharing candy with all of their friends but my child can’t take it. It’s definitely isolating, even when there is no evil intent. All kids need to learn (often the hard way) that life isn’t fair and sometimes bad things do happen to good people but there are plenty of opportunities to learn that out there without the added exclusion that food allergies can certainly bring.

Some of you are probably hoping to avoid the whole back to school mindset for a little while longer but I have to say that it’s been on my mind for a while. That’s because Megan is heading off to high school next year for grade 10. What compounds the normal food allergy issues is that it is a self-directed school where students work through modules and may have different schedules from each other.

This means that Megan is not attending her regular feeder high school but a magnet school where children come from all over the school district. For the first time, she will be without her regular posse of friends who have been very protective of Megan and her allergies. Further, as a self-directed school, there are not set lunch hours so we’ve already been told that kids eat everywhere and that food allergens may be difficult to monitor. The school itself is in a rural setting, about half an hour from our home by highway.

Statistically speaking, teenagers are at a higher risk of anaphylaxis than younger children. Throw in the regular teenage desire to not be different (which is often amplified for food allergic teens) and an assumption by adults that food allergic teens need to start becoming more responsible for their own safety and you can get a recipe for disaster. This is what worries me despite the fact that we know we’ve trained our child well. It’s still no guarantee, as many parents who have lost their teen allergic children can attest.

I’m not trying to be a scare monger but I’m finding this change really difficult. Even more so than when we moved to our new home here on Vancouver Island or when Megan went to junior high. Perhaps it’s a lack of control that I’m feeling, especially since it won’t be easy to just drop into the school and be as involved as I have been in the past.

On the bright side, we had to fill out a new food allergy form this summer to send into the school so I see that our school district’s food allergy policies are being followed. Megan’s epi pens are up to date and her alert bracelet is in good order. We informed the school as to her food allergies in the spring and we have another meeting at the end of August before school starts in September so we’re certainly doing all of the right things.

I’m not sure what the alternative is: home schooling, move to Antarctica or the biosphere, buy a teen size plastic bubble? We’d all be driven nuts in short order but maybe I’d sleep a little better at night.

Did you know that this week is Food Allergy Awareness Week? Because of this, you may find that your inbox is inundated by information about the prevalence of food allergy, the latest in treating food allergies and more.

I like to think of this week as an opportunity to review how we handle food allergies in our family and to fight against getting complacent. I’ve found over the years that it can be easy to get complacent without realizing it, especially when you’ve been doing everything right and you haven’t had any emergencies.

So think of this as an annual reminder to review your approach to food allergies, just like we use the time change to upgrade our smoke detector batteries. Here are my 3 Rs for Food Allergies as follows:

REMIND your family and your child’s caregivers about the signs of anaphylaxis
REFRESH your skills and those caring for your allergic family member for using the epi-pen and;
RESOLVE to educate more people about the very real and growing threat of food allergies

Simple, right? It’s time to get started right now!

At 14, Megan is past the point of wearing allergy t-shirts and carrying her Nonuttin’ lunch kit that says, “Don’t feed me, I have a food allergy.” She does still have a medic alert bracelet though and that won’t change as she moves into adulthood.

So despite her advanced age, I certainly remember what it was like finding something that Megan would like and be comfortable with. So it was with delight that I found an allergy bracelet in Chicago on the weekend that I think she would have loved when she was in elementary school; the Allerbling bracelet.

It’s a 100% silicone bracelet with 5 openings to accommodate a medic alert symbol plus 4 separate spaces to put in your child’s major allergies. And since it’s customizable, you can choose from different symbols including the top 8 food allergens, strawberries, coconut, corn, chocolate and bees. Because it’s so bright, colorful and comfortable to wear (not to mention washable), I think it not only does the job quickly, but kids can also feel great wearing it and easily communicate their allergies.

Check out their website at: http://www.allerbling.com

For those of you who have followed my blog for the last couple of years, you know that we’ve been no stranger to travel despite 6 food allergies in our family. We’ve been to the US, the United Arab Emirates, Oman, England and Costa Rica. We’ve flown, ferried, and even dugout canoed through canals in Costa Rica to get to our final destination (and yes, there were alligators!).

These travels have not been without their stresses and pre-planning is definitely key. The vast majority of our trips had us staying with very supportive family members and/or renting suites that had a kitchen so that we could do all of our own cooking.

The most difficult trips for planning are those that have us moving daily and trying to catch meals on the fly. If any of you have tried to get a safe meal in an airport, you know the frustration of not having your own food at your fingertips. Well, Megan (4 food allergies) and I are leaving on Friday morning at 5:30 am for her band trip down the coast of Washington, Oregon and California. It’s definitely a challenge given that we are in a different place each night until we reach Anaheim, where we have 3 nights with our own fridge and microwave.

Luckily, I have spent lots of time in Washington and Oregon of late plus we’ve had 2 previous trips to Disney (which has been fantastic for food allergies) and one to Universal Studios (which was not a helpful place for food allergies) plus my oldest daughter went on the same trip 2 years ago so I know what to expect. As a result, we have got a suitcase of granola bars, granola, trail mix, cookies, crackers, chocolates, soup and utensils. I’ve also got granola bars for all of the kids on the bus so that they can have a safe snack when necessary without resorting to items with Megan’s 4 allergies in them. This is one time it comes in handy to own an allergy friendly food company!

We’re also attending Medieval Times so I’ve called them and they’ve sent a menu with all of the ingredient lists so that we can specify how to change her menu. I’m also checking for the gluten in the meals so this might get quite interesting.

I would say that the most difficult times are when everybody else is eating dessert and we can’t or when the tour goes to a chocolate factory in San Francisco and we can’t have any of the chocolates and fudge that the other kids will be buying by the truckload. I try to mitigate that unfairness with a bunch of safe Easter chocolates I’ve found and packed into the suitcase but I’m the first to admit it’s just not the same. It’s certainly easier when we travel as a family since we all eat the same for everybody’s allergies but in a group, you can’t ask the other kids not to eat their dessert.

So wish us luck as I navigate the food allergy highway, particularly with a bunch of junior high school kids!

It’s the time of year when my travel schedule gets incredibly crazy as I go to both business trade shows and consumer trade shows for gluten free and allergy friendly foods. It means that my blog posts have rather erratic timing but I certainly find much in my travels to blog about.

I spent last week in Portland and Seattle, first attending a college and university foodservice trade show followed by meetings up the coast of the Pacific Northwest. It’s such an amazing difference from even 5 years ago when I had to convince many why they needed “free from” food in their stores and foodservice environments. Now, so many people are up on the needs and I’ll write another post about the amazing service one university in California gives their allergic students.

One disturbing development though was when I went on store visits. That’s when I pop into various stores in the area, some that carry our products, some that do not, so that I can see what they’re doing in their stores for the “free from” market. If I find something new and wonderful, I’ll purchase it to bring to my family to enjoy.

On 3 separate store visits, I found 3 different products that had labeling that to me, as a consumer of allergy friendly food, was unacceptable. I’ve often found inappropriate labeling on small, local companies’ products which I can understand. While it’s still not okay, tiny companies often don’t have the experience on labeling nor the budget to hire a labeling consultant. But this time I also found major companies that had really misleading labels.

I won’t mention the exact companies as these concerns are about me as a purchaser of free from food, not as the manufacturer of a potentially competing company. Here’s what I’m talking about:

Major National Gluten Free Company:
Front of package: Nut Free
Back of package disclaimer: Made in a facility that also processes tree nuts

Small Local Company:
Front of package: No Wheat, No Soy, No Dairy
Back of package disclaimer: Produced in a facility that may process wheat, dairy, eggs, nuts, shellfish, and/or soy

See anything that concerns you here? From my perspective, if a manufacturer is going to make a front of package “free from” claim, they are being misleading if they also feel that they must put on a disclaimer. It’s either one or the other, not both, in my opinion.

I did talk to the buyers at the stores of the above products (2 different stores). One store buyer agreed that it was a concern but that they were having great difficulty sourcing products that were completely free of many allergens.

The store buyer at a different store figured the “nut free” on the major brand gluten free muffins was just fine because there were no nuts in the muffins. Obviously, cross contamination concerns were not on her radar and she didn’t show much interest in my concern as the parent of a child with life threatening nut allergies.

What do you think about this kind of labeling? Am I being overly picky?

We’re very lucky that our government in Canada is supportive of small businesses and provides favorable loan programs for the purchase of machinery. Because of a loan through our local Community Futures office, we were able to purchase “Bertha” our packaging machine that puts the packaging around all of our granola bars (we name all of our machinery, including Fabio, our heat shrinker).

Because of that loan a few years ago, we were chosen to be showcased in a series of successful business videos put together by Community Futures BC. That video is now available for viewing on YouTube at: Nonuttin’ Foods on YouTube. Check it out to find out a little bit more about our family business.

FAAMA, The Food Allergy and Anaphylaxis Management Act was passed into law in the United States after being signed by President Obama on Tuesday, January 4, 2011. So what does this Act mean to you as a food allergic parent?

Here is the official summary of the ACT which was introduced in February 2009:
Requires the Secretary of Health and Human Services to develop and make available to local educational agencies, schools, early childhood education programs, and other interested entities voluntary guidelines to develop plans for individuals to manage the risk of food allergy and anaphylaxis in schools and early childhood education programs. Directs that such guidelines address:
(1) parental obligation to provide the documentation of their child’s allergies;
(2) the creation of an individual food allergy management plan for each such child;
(3) communication between schools or programs and emergency medical services;
(4) reduction of exposure to anaphylactic causative agents;
(5) food allergy management training; and
(6) administration of epinephrine.
Allows the Secretary to award matching grants to assist local educational agencies in implementing such food allergy and anaphylaxis management guidelines.

What the law will actually do in its practical application remains to be seen. At the very least, this law should give parents a legal means to fall back on in EVERY state should their school/school district administration not accomodate for their child’s anaphylaxis. Further, it allows for the legal means to give epinephrine, which seems to have been a cause for confusion or inaction in schools.

While there are many teachers and administration who have been wholly supportive of anaphylaxis plans, many parents report to me that they have been treated as second-class citizens in the school system and even have had it suggested that they home school their child. While many allergic parents do pursue this option, it should be by choice, not fear or intimidation. As a former teacher, I can’t imagine that any teacher or school would be apathetic about anaphylaxis but it has been a very real issue for many around the world.

It will take some time for the voluntary guidelines and educational materials to be developed and funding to be provided for training. But in the meantime, a very important first step has been taken for those with anaphylaxis in a school setting.

Just after Christmas I heard that a Chicago teenager had died of anaphylaxis on the last day of school before the Christmas break when she had Chinese food with her classmates. These stories always make me cry because while I cannot understand what it is like to lose a child, I can tell you that I have imagined it more than once. My heart goes out to the family of this child.

From all accounts, this was a child whose parents had well-equipped her for living with her food allergies. School staff had checked on the safety of the food to be served more than once and school officials and classmates were well aware of the peanut allergy. The details have not been released so the public may never know what exactly happened. There is some question of whether epinephrine was injected. The stories indicate that it is against Illinois law for staff to administer epinephrine unless the prescription is specific to the student. If you’d like to know more, you can read the Chicago Tribune article and the Allergic Living article.

I have many questions after reading the accounts; not in the interest of assigning blame but to understand and learn about what I can do with my own child and her school. The accounts indicate that in Illinois students are not allowed to have epipens with them and teachers can’t give another’s epi-pen to a child having a reaction. To me this is highly disturbing. Is this an indication that the fear of liability trumps medically necessary action?

So now you’re wondering, okay Alana, you title says Tragedy and Hope; where’s the Hope part? While we can never bring back these children, we can use these tragedies to better protect all anaphylactic children. After a similar death in an Ontario school, we got Sabrina’s Law. Sabrina’s Law helped provide the background for my province’s anaphylaxis policy and gave allergy advocates around the world a springboard for their own country’s anaphylaxis laws and policies. I have Sara Shannon to thank for making sure that the lessons learned from her daughter Sabrina’s death would not be forgotten. My child has benefited from that advocacy.

To that end, more hope was created yesterday in the US when President Obama signed into law FAAMA. This stands for the Food Allergy and Anaphylaxis Management Act, a national law for all states to protect anaphylactic children in schools. Voluntary guidelines and materials will be created for states to access. You can read the information about what this law means and how it came about on the FAAN website.

I look to these developments with hope to educate all about the very real risks of anaphylaxis and to prevent any more needless deaths.

I realize that many people use Thanksgiving to go over their gratitude list but I tend to think about these things more toward the end of a year as I pause to reflect where I’ve been.

After a meeting this morning where I realized that when I get really busy (like right now as I get 5 new products ready to launch in February), it’s easy to forget that I’m one lucky lady who has a lot to be grateful for.  Here are just a few things that come to mind:  

The health and happiness of my family and friends
The ability to own a company where I feel that I make a difference
Great employees who care about my allergic child and the people we serve
A community that embraces small business and is willing to support us
A warm, loving home to come home to

There are so many more I can think of but those are my basics.  I wish you all a wonderful holiday season and may you have many bright lights of your own in 2011.