Remember how rule #1 of The Nourish Project was to get my family on board and I found it surprisingly easy? I heard the first rumblings of revolt yesterday.

As a little background, one of the things we’ve tried to do for our allergic child (now 16) is to have an open door policy at our house. This allows her to have a safe place to have movie nights, etc. with her friends without worrying about food issues from what they’re eating to whether she sleeps over on a couch where people have been eating (and dropping into the cushions) peanuts and almonds.

Ironically, my allergic child at the same time is not terribly social outside of the school setting and while she loves to go to neutral places with her friends (i.e. the movie theatre), she rarely has people over and rarely goes to others’ houses, even when invited. Go figure.

So in the interests of having a child who doesn’t turn out to be a social recluse, we’ve been gently prodding (okay, maybe not so gently) her to invite her friends over, even if every 3 months.

So imagine my surprise yesterday when not only had she planned a movie marathon with her 2 closest friends that had been put off for a year (yes, really) but that they weren’t doing it at our house. Why? Because we don’t have junk food in the house and so nobody wanted to come over and she was quite content to go elsewhere to get her junk food fix. Oh heaven help me!

So we are now getting enough junk food for a movie marathon to be held at our house – no more, no less so that there’s nothing left over for a midnight raid by other desperate household members (me). We did already keep some beverages like fruit spritzers in our bar fridge for guests anyway so it’s not like we’ve gone completely back to the 1800s despite the rebel theory.

So peace has been restored for this day. Let’s see what happens tonight

Who knew that when starting at a new school that my food allergic child would cause more stress than the school itself? We’ve always known that our child has a great deal of difficulty with change, even if she doesn’t show it anywhere but in the safe confines of our home. I’m not sure if she’s this way because of the food allergies or whether she would have been like that regardless, all I know is that change creates a great deal of anxiety.

Before school started, we had a great meeting with the school counsellor assigned to our child and got a better sense of how they handle food allergies and how we could work together. We were all pleased to find out that they have dozens of food allergic children in the school, which makes sense given the current statistics. But still, it was a consolation to Megan to know that she was not alone.

After that, our next step was to take a new picture of Megan to update her anaphylaxis poster plus recraft a letter for the parents in her classes and send those off to the counsellor for distribution to all staff. The first mistake I made was including Megan in the process. I figured that since she turned 15 the previous week, she should be included in making a new letter for high school. Apparently, nothing I said was right. In the end, after many tears, it basically came down to the fact that she didn’t want to be singled out as different. I get it, believe me, I do, but our reality requires everyone around her, including her peers, to be educated.

The next wrong move was having her check out the updated anaphylaxis poster before sending it off to the counsellor with instructions to post on neon paper and put in all Megan’s classrooms and staff areas. Blowup number 2 came at that point. I’ve done these posters every year since she started school, including when she moved to new schools. But at the age of 15, the idea of a poster if mortifying. Again, I get it, but in my book food allergies are one time when people need to know who you are. And that comes from experience when I didn’t know all of the students in the school I was teaching at.

So once that was done and my child wouldn’t even look at me, she went off to her first day for just a morning of orientation.
Megan started off the school year with a homeroom teacher who has peanut allergies. Sounds good right? Until the part when they realized that during the day when she isn’t in homeroom, they have special needs kids and Aboriginal kids (we have a reserve very close by) working with different counsellors, etc. All good except when those kids are hungry, guess what they feed them? Yup, peanut butter sandwiches. And the concern expressed by the aides who feed the kids was that some of those kids may be a bit smeary and not clean up well. I was really pleased that the counsellor informed me of this situation; I felt that the staff had Megan’s best interests at heart.

Therefore, that afternoon I moved Megan into a homeroom that is a science lab because no food is allowed in at any time. The school was great in providing the suggestion and in making it happen fast but Megan imploded. For me to move her after she got comfortable in that new classroom that first day and after I sent a letter plus posters to be posted up all over the school with her face on them, was unforgiveable. She figured she’d get through her homeroom for the next 3 years (they stay in the same room with kids of all ages), by not touching anything. Highly unrealistic to the logical thinker but completely normal to a kid ready to run screaming into the night. All I could think about was how teenagers have the highest risk of anaphylaxis and now I know why.

I was a basket case. How do you handle when the parents and school are working together great but the child is completely not on board? It caused me more than one sleepless night and many heart to heart talks with my husband. In the end, Megan did apologise to me when she realized she was being unreasonable and that we all had her best interests at heart. So we seem to have settled down but I’m still dancing on eggshells a bit.

Just don’t let Megan read this blog – I’m not sure our house could survive it.

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.

I’m not sure if I’ve shared this before but I’m a member of Rotary International. In fact, up until Sunday, I was the club president for my morning Rotary club here in Duncan and am now immediate past president. The ideals of Rotary are ones I appreciate because they promote care and understanding both locally and internationally; something I’ve always tried to teach my kids.

One of the programs within Rotary that I think is so vital is the Youth Exchange Program. This program has many different options from summer exchanges through to full year placements world-wide. My oldest daughter decided to do the summer exchange program this year which means that we get a student for a full month at the same time as my daughter and then they go together to the other student’s home. In our case, we have a student from just outside Paris who arrived last night and both my daughter and this teen will go to France July 28th. My daughter will then come back alone on August 22nd.

Rob and I have always advocated travel with our children as we believe that it opens up understanding between cultures and allows one to learn so many things that cannot be taught with books. However, it is a challenge to travel with food allergies, even when traveling in your own country. For that reason, we always planned on having our oldest child participate in a Rotary exchange (she’s outgrown her food allergies and only has drug allergies now) but never felt comfortable with our youngest child and her 4 food allergies going on an exchange. We may need to rethink that.

The 15 year old that we brought to our home last night has many allergies, including to animals and a life-threatening peanut allergy. The original family that she had been paired with was unable to accommodate these allergies and so she inadvertently got paired with ours instead. It was a very fortuitous pairing since I’m allergic to animals and my youngest is allergic to peanuts; our house is a haven for our French teen. Her parents were very relieved as we’ve arranged everything through emails over the last few months. It also helps that our family speaks French and the French student speaks very good English – so no language barrier there.

But that takes a lot of faith for our French student’s family to trust another family halfway across the world with a life-threatening food allergy. I’m not sure I’d be up for that. Until our student was coming, my food allergic child also did not feel comfortable with applying for the Rotary Youth Exchange program as she thought that there was no way she would be able to find a family who she would feel safe with. And yet, our French teen’s family found just that with us.

Is it too much to expect that we might find someone who had food allergies too within the Rotary Youth Exchange Program? And what about the language barrier that is often present? We can rank our preferences for the country our child goes but that’s not always guaranteed. Right now, there are too many uncertainties for me to feel comfortable but am I placing limits on our food allergic child that are unreasonable if she feels comfortable? Next summer she would be almost 16 and at some point I have to be able to let go but is that first step sending her halfway across the world?

What do you think?

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!

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?

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.

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.

It’s been one year since we were in the ambulance and to the hospital with Megan’s allergic reaction to kiwi.  When I mentioned it to her on Saturday (the exact anniversary date), she was dismayed.  In her eyes, remembering the date was the last thing she wanted to think about since she has no desire to ever go through that again. 

Believe me, I have absolutely no desire to go through that again either.  It was the first time she had a reaction in 9 years, the first time she was without us during a reaction, the first time she had to call 911 and the first time she had to self-inject the epi-pen.  And not only did we need to deal with the medical emergency with her, we had to emotionally deal with her older sister who was traumatized by the incident and our friend’s son who had offered our daughter the drink that Megan reacted to even though it wasn’t his fault.

As much as I want to follow Megan’s advice and forget about that last reaction, I can’t, nor do I feel I should.  I feel that we had gotten complacent because we had been so careful for so long and that was part of the reason why the reaction occurred.  It’s not that we started cutting corners like eating food products that had “may contain” on them or that we stopped checking out ingredients in the grocery store.

The complacency was more about thinking that our “safe” places (as my girlfriend’s house where the reaction occurred normally is), were absolute and that all items provided in those safe places didn’t need another check.  A  simple check of the Koala brand lemonade spritzer would have quickly revealed that it was a kiwi-lemonade drink.  But that didn’t happen.

So I need to remember and also climb down off of my high horse.  Our allergist had been surprised that despite Megan’s extremely high test numbers, we had not had a reaction for so long.  I wore it like a badge of honour (see how good I am with managing the food allergies).  Now, I think that diligence is absolutely necessary but sometimes it’s also about being lucky. 

So Rob and I are doing our best to manage the complacency that can creep back in when you don’t even know it.  We will continue to remind our children, all family members and others that come in contact with our allergic child.  But I’ll also cross my fingers and toes plus pick all of the four leaf clovers that I can find.  Whatever it takes to get us through another year.