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.

We can pick our friends but we can’t pick our families and when you’re dealing with food allergies and intolerances over the holidays, you might just want to hang out with your friends. What is it about food allergies that can cause so many family feuds?

And why is it that all holidays between Halloween and Easter are excessively celebrated with food? From US Thanksgiving on Thursday through to Christmas especially, every get together is frought with minefields that we must safely navigate. These holidays can be the most stressful of all, especially if you gather with family who just don’t understand the severity of your needs. Is it any wonder that some of us just want to hibernate?

I’m the first to say that I’ve been really lucky in that I have great family on both sides who take our family’s food allergies very seriously when we’re visiting. Everybody always goes out of their way to make sure that the food is safe and that we have lots of choice. It’s what has allowed us to sanely navigate our way through many a pot luck family reunion. Even if extended family is not on board, we’ve always been able to enjoy ourselves with what’s available to us from our closest family, away from the main food serving area.

But I’ve heard horror stories ranging from the grandma who leaves the bowl of peanuts out on the coffee table near an allergic toddler to the sister-in-law who gets offended when you can’t eat her wheat laden house specialty. Is it worth it to even go to a family member’s house if they just don’t get it? Will they ever get it? If so, what does it take? If not, is it easier said than done to write them off?

Researchers at National Jewish Health released a study in the Journal of Pediatrics on October 29 that says that many people are mistakenly avoiding foods that they believe their children are allergic to or believe is affecting eczema in their child.

Part of the problem is the difficulty in diagnosing food allergies. It turns out that a combination of patient history (including family history and previous anaphylactic attacks), skin tests, blood immunoassays and food challenges have to be assessed before a truly definitive diagnosis of food allergy can be applied. However, in practice, patients do not always go through these as part of the diagnostic process.

Add to that the fears of the food allergic and their parents, such as my child’s strong aversion to a food challenge, and you get many people who are avoiding foods unneccessarily. Check out the link to the study to see how many study participants were able to add foods back into their diets: http://www.sciencedaily.com/releases/2010/11/101104171350.htm

I always loved the quote from allergy expert Dr. Scott Sicherer in response to whether moms eating certain foods when pregnant could increase the rate of food allergies in their children, “We’ve also seen a rise in cat allergies and, as far as I know, mothers aren’t eating more cats than they used to.”

Not only did this quote make me laugh out loud when I heard it, it made me feel a whole lot better about my role in my children’s food allergies. Not so fast, it would appear.

Now Dr. Sicherer has released preliminary food allergy data that indicates that what we eat during pregnancy may indeed have an affect on the development of food allergies in our infants. When reading the article, it was like reading 100% of my own experience including milk allergies in both my daughters and quite severe eczema in my youngest.

Read the article here: http://www.ctv.ca/CTVNews/Health/20101102/baby-peanuts-101102/

During my eldest child’s pregnancy, I ate peanut butter rarely because I found it made me nauseous. She now has no allergies. During my youngest child’s pregnancy, peanut butter was one of the few nutritious foods I could eat that didn’t make me ill and she currently has 4 food allergies and continues to have eczema. Hmm.

Dr. Sicherer does go on to say that more studies are needed to provide advice on what should be eaten during pregnancy. And obviously, for those of us who are finished our childbearing years and already have children with food allergies, the horse has escaped and there’s no closing the barn door so to speak.

Now in my forties and a little further along the food allergy path with my family, I’m not going to jump on the blame train quite as quickly as I might have in the past. Perhaps it’s also because, like any health issue, different studies often show conflicting data and so I don’t take absolutely every study as gospel truth anymore.

Besides, my husband has allergies to shellfish and I have environmental allergies, sulpha allergy, asthma and eczema, so I’m feeling we’ve got some murkiness in there. So I’m pretty content to share the blame with him, my mother’s environmental allergies, my uncle’s shrimp allergy, my grandfather’s…

My husband absolutely loves Halloween and we have more decorations at our house for this event than Christmas and the rest of the holidays combined.  We have flying bats, tombstones, skeletons, giant spiders, special lights, candy bowls, chains, cobwebs, sound effects and more.  We even looked at an enormous skull for the front porch on the weekend (no, it never made it into the cart).  But here’s a secret:  I dread Halloween as the parent of an allergic child.

It starts in August with the Halloween candy down every store aisle.  This has been handy for nabbing the safe treats that my allergic child will keep at school for unexpected events.  But navigating past all of the peanut butter cups and nut filled candy bars is frustrating when they put them anywhere they think they have room.  They even put piles in the produce department! Read more »

Much has been written about oral immunotherapy over the last while and 2 of my favorite enewsletters, Kids with Food Allergies and Allergy Moms, have recently reported on different aspects of this food allergy treatment.

Kids with Food Allergies is asking for parents of food allergic kids to fill out their survey asking your opinions about various aspects of this treatment. If you’d like to fill out the survey, here is the link: www.surveymonkey.com/s/Y3G69JH

But before you start filling out the survey, you might want to know a little bit more about oral immunotherapy as it has been successfully practiced in several clinical studies. Unfortunately, it has also been practiced unsuccessfully in less controlled settings such as at home and by some naturopaths, one of who was sued for the death of a client in England.

Essentially, oral immunotherapy is giving controlled doses of the food allergen protein by mouth starting with miniscule amounts and gradually increasing as the immune system builds tolerance.

Properly done, in the right controlled setting including at Mount Sinai, approximately 50 to 75% of the patients in the study showed a tolerance to the allergic food. I know of 2 families that were enrolled in the Mount Sinai study. One child has outgrown one allergy and is working through another food allergy with successful results so far. The other family was forced to drop out of the study as their child was having very strong reactions to the food allergen (in this case, dairy), and was unable to continue for safety reasons.

Gina Clowes, founder of Allergy Moms, recently did an interview with Dr. Richard Wasserman, who is an allergist and uses oral immunotherapy in his practice. I found it very helpful in understanding the process and you can check it out on the Allergy Mom blog.

I have to admit that I don’t think oral immunotherapy is for us. Dr. Wasserman indicates that some patients have severe anxiety with this process and I believe that is how my allergic child would respond. She won’t even go for scratch tests to see if she’s outgrown any food allergies as her last scratch and blood tests were traumatic for her.

I am hopeful though. Even if not every person can be desensitized, oral immunotherapy is a potential link to solving the food allergy health concerns that just continue to grow. In any case, this is one therapy that must be left to the experts and not tried at home.

Why does it always feel like the new school season sneaks up on me, even when I’m thinking that I’d welcome the return to routine?  Some of you have already gone back to school (either yourself or your kids), and some are heading back shortly.  Even if you don’t have children and school is the furthest thing from your mind, it’s still a great opportunity to review the systems you have in place to control your special dietary and medication needs. 

1.  I know it is stressful to put your child’s life in someone else’s hands.  But remember that this may be an educational journey for the staff you’re speaking to.  It is imperative to work through the issues positively but firmly and recognize that it may take several meetings and contact on your part to implement an appropriate plan.  Having all staff who will deal with your child present at the same meeting is helpful but also ensure that part-time staff or teacher substitutes are included in the staff plan.  If you are in a workplace environment, take the time to educate your boss and co-workers.  Don’t assume that because someone has dealt with your same medical concern before, they know everything about the condition and treatment.

2.  As a former elementary teacher, I really appreciated having the parent of the child with medical concerns (food or otherwise) provide me with some helpful information and tips that I should be aware of.  This could include suggestions for healthy lunch ideas for the class that don’t include the allergen, facts about the food allergy he or she will deal with, providing safe treats to keep in the classroom and perhaps offering to come in and speak to the class about your child’s allergy.  Back to school is an incredibly busy time for teachers so taking away the burden of doing their own research about the allergy is appreciated and gives them something to refer to throughout the year.

3.  If the school does not already do so, create a bright, colorful poster with a picture of your child on it, what they are allergic to and the steps to take if a suspected reaction occurs.  Consider making several posters for the office, the staff room and any classroom your child will be in.  This is one situation where it is okay for your child to stand out; it may save their life.  Dorm rooms and offices where allergic adults are should be considered for this as well.

4.  Now is the perfect time to ensure that your epi pens are up to date, any antihistamines required are stored with the epi pen and instructions have not worn off the side of your epi-pen. 

5.  If you do not yet have an alert bracelet or necklace for yourself or your child, now is the time to get one.  If you don’t want to get a medic alert brand bracelet, you can find what you need at your local jewellery store and have it engraved as to your medical condition.  If you already have a bracelet, check that any engraving has not worn down and is still readable by emergency personnel.

6.  Do you have any old epi-pens or an epi-pen trainer?  If not, get one.  This is the time to refresh yourself on the use of the epi pen at the same time as teaching any new people in your or your child’s life from teachers to daycare providers and bosses to friends.

7.  Make sure your child is well prepared.  For us, this meant a lot of instruction on hand washing and setting ground rules for not sharing food, etc.  Include them in their choices of safe treats that will be kept at the school so they always know they’ve got something yummy should an unexpected food event occur, like another child’s birthday.

8.  Speaking of hand washing, make sure that your school has appropriate soap and towels (we had to get the school board to put up liquid soap dispensers) and that your child always has ready access to running water with ample supplies.  Hand washing before eating is much easier to control then having all surfaces washing consistently.

9.  Be prepared to be involved at school with everything from baking/bringing safe treats for parties to field trips and participating on the Parent Council.  It’s time consuming but worth every second.

10.  Finally… be good to yourself.  Worry and sleepless nights take their toll on not only you but your allergic child.  Take the time to spend extra time with your allergic child doing something fun just for the two of you; you’ll be glad you did.

Do you have some of your own tips?  Be sure to add your comments.

Do you ever wonder why you never see the words allergy free on our products or website?

I began using the term allergy friendly about 6 years ago and ever since then have been correcting those who refer to Nonuttin’ products as allergy free.  While I can understand that like “gluten free”, it’s a quick and easy way to refer to products that are designed for those with food allergies, it doesn’t communicate the true reality of food allergies. Read more »

I’m here to tell you a secret;  traveling is not all glamor.  Hard to believe, isn’t it?

I remember when my kids were little and my husband had to travel for work conferences.  I’d be exhausted when he came home and he had the nerve to be exhausted too!  How could that be when he’d had a hotel to go to sleep in, meals provided, banquets to attend, no children to wake him up in the middle of the night, no carting the kids back and forth between childcare plus work?  Now, I’ve discovered why as the shoe is on the other foot.

Because it is my company that I travel for, no one is planning my dinners for me at lovely restaurants when I’m away.   And, like many of you with food allergies and intolerances, I cart my own food with me so that I can eat safely and healthfully and try to book hotels with a microwave and fridge wherever I can.  I’ve been traveling so much in the last 3 months that I haven’t spent more than 10 days at home at a time.  At one point, I looked out of my plane at the city beyond and forgot where I was (Vancouver)!

So you might ask, why do I do it?   Here are the things that keep me going:

The eleven year old boy at the Canadian Celiac Association’s National Conference in Winnipeg who mowed through all of our samples once his mom had determined all of our products were safe for his Celiac disease, peanut allergies, egg allergies and dairy allergies.  What a smile on his face and his mom’s too!

The lady at Choices gluten free fair in White Rock who found out we’re free of sulfites and dairy.  She told me that she was in love with our company. 

The store owner who came up to our booth at the Canadian Health Food Association’s Expo West who said she can’t keep our Energy Explosion trail mix on the shelf, people love it so much.

The lady who’s been a customer for years who introduced herself at the Celiac Disease Foundation’s Annual Conference in Los Angeles in May.  It felt like I was meeting an old friend.

But it’s the same in all that we do isn’t it?  We handle all of the education and anxiety necessary to deal with our family’s food allergies and at times it can be really overwhelming.  We plough on, sometimes just putting our heads down and marching ahead because it’s really all we can do.  But then we get those moments of bright light; that small thing that may not mean much to someone not in our shoes but can mean the world to us.  A new safe product, a medical situation handled well, excitement over finding someone else who really “gets it”.

Small things – they’re really what makes the world go round.

It’s bad enough that we need to convince people in our lives that food allergies besides peanut can create life threatening reactions too.  But what happens when even allergy researchers believe that certain food allergies are not as serious? Read more »