Did This Blog Save A Life Today?

Today our daughter had her second anaphylactic reaction. It was truly another formative experience. What was scary this time however is that we do not know for sure what caused the reaction. In December we isolated the cause to be peanut, her peanut allergy subsequently being confirmed by our allergist. This time we do not know what happened, which is more frightening than the emergency situation itself.

Anaphylaxis is an invisible condition. Your child goes from perfectly fine, to near death and then quickly back to being okay within minutes. It's crazy to watch and not being able to pinpoint the allergen makes it even more frightening.

We think it might have been a dog this time! Our daughter is allergic to dog saliva - wheals appear when a dog licks her face. This is tough as our daughter loves 'doggies'. A few of our friends have dogs and initially they did not really understand how serious the reaction was. Once our daughter had her peanut reaction in December our friends usually have the dog out of the home when we come over out of concern. They have been very accommodating!

Today our daughter ran her hand down a dog's coat before we could stop her. We think she then touched her eye. Within 10 minutes her eye had swollen shut, wheals appeared on her face and she started to get serious swelling down the side of her face and under her jaw bone. I was not with her at the time and my wife was amazing in this critical moment.

My wife did not hesitate to use the EpiPen. My mother happened to be in town and helped my wife prepare the EpiPen for the injection. In the interest of full disclosure, my mother was the Teacher in the It Takes A Village series. She spent her whole career fearing a scenario just like this. Instead of facing an anaphylactic episode with a student, she was forced into a potentially fatal emergency situation involving her granddaughter.

My mother and my wife were incredibly calm and effective in the heat of the moment. They quickly and calmly administered the EpiPen, became emotional only after the reaction started to subside. It is very difficult to check your emotions and deal with the situation objectively when so much is on the line.

Once I arrived home I made sure my daughter took a little more Benadryl as the swelling had returned. We then rushed her to the hospital. I called 911 on the way to let them know what was going on. Out of concern for my ability to drive safely under the circumstances, 911 asked me to pull over and they sent an ambulance. Though I knew I would be fine I thought it best to not second-guess 911 so I pulled over. For the second time in a row the paramedics were amazing, arriving within 5 minutes and creating an overwhelming sense of calm. Though the reaction was not nearly as bad as the peanut response, the standard three hour wait in the ER was prescribed to make sure that the reaction safely subsided.

The paramedics and doctors were very impressed with the use of the EpiPen. They noted that all-too-often parents bring in a child without the EpiPen being used, often toting an unused EpiPen. The Emergency Room doctors have these parents administer the EpiPen in the ER under supervision, all the while coaching them to do this right away next time. The doctors reinforced the fact that you have to act quickly and that many parents just cannot bring themselves to drive a needle into their child's leg.

Bottom line: you simply have to do this!

My wife said afterwards, "If I hadn't heard so many stories from other parents through the blog, I can easily see how difficult it could be to use the EpiPen. You don't want to believe that the reaction is as serious as it is. You don't want to believe the situation is truly life or death. It would be easy to convince yourself that a good dose of Benadryl and a hug would be enough to make her better and that using the EpiPen is only for the greatest of emergencies. Being exposed to the experiences of other parents gave me confidence to use the EpiPen without hesitation. There was no questioning the use. It was simply the next step.

I credit the blog for giving me the confidence to use the EpiPen. It was awful to inject the needle into her leg but I knew I needed to do it. Before today I really wanted to believe that the first reaction was an isolated incident. I would never have driven a needle into my daughter's leg if I did not know about cases where children were lost due to a delayed response. Though we'll never know for sure, it is possible that today I saved my daughter's life and I credit our blog for that."

I agree with my wife that writing and discussing the blog played a major role today. She was calm and knew exactly what to do. She was also reassured by my past blog posts about the fact that these reactions are (unfortunately) commonplace for children with multiple severe allergies. Avoidance is never going to be absolute so it is critical to be prepared for an allergic reaction.

Our daughter was again a brave little girl today. It was very interesting this time to explain to her why Mommy drove a needle into her leg. She now understands that doggies make her sick. Her ability to communicate is going to be a great ally in managing her allergy ... she already says 'No Peanuts Please' when she sees cookies or other food and 'Doggies Make Me Sick' is now added to her list of phrases.

Today was a very tough day but it is comforting to know that we were ready. We acted swiftly and with confidence. Though you never want to see your child in a life or death situation, today we learned a lot about ourselves. It is very satisfying to know that we are able to execute our anaphylaxis emergency response plan.

Let's hope these skills are not needed again any time soon.

Not Soy Good

As I sifted through my gmail tonight I found a message from Robyn at AllergyKids. The article discussed recent research into the possible link between soy allergy and peanut allergy.

The researchers urge parents of peanut allergic children to eliminate soy from their childrens' diets as well. "Some sensitive children have "hidden" soy allergies that manifest for the first time with a severe -- even fatal -- reaction to even the low levels of "hidden" soy commonly found in processed food products."

This is concerning. We make smoothies all the time that include tofu and our daughter has eaten edamame on many occassions. Though the article does not give a percentage as to the proportion of peanut allergic children who are also allergic to soy, the new information on soy is a cause for concern.

As is the case with many aspects of managing our daughter's peanut allergy, we have little choice but to take this seriously and remove soy from the home. We'll also have to do additional research into soy.

Peanut Butter Bagel

This story is the exact type of story that parents fear. An 18-year-old girl from Colorado ordered a "spinach parmesan bagel with veggie lite cream cheese" and ended up getting a surprise! "Cross-contamination from a knife that had been used to spread peanut butter, got wiped off, then was used to spread the cream cheese on Lauren's bagel." Upon eating the bagel Lauren felt somewhat ill but it was not until she started tennis practice that she felt hives on the bottom of her feet and was rushed to hospital.

The owner was great in the handling the situation. He was surprised that despite all of his precaution and care, the young girl came into contact with peanut protein and went into anaphylaxis. He has since removed peanut butter from the store to play it safer. Kudos to him for responding so positively and quickly to this situation.

Girl Guide Cookies

I've always loved the classic Girl Guide cookies ... not the contemporary mint variety but the old school chocolate and vanilla. We have two boxes in the house as I was very happy to discover that they are now produced in a nut and peanut free facility.

The only downside to this is that my daughter can now eat them without the risk of an anaphylactic reaction due to peanut exposure. I've always been partial to the vanilla cookies and it seems our daughter inherited that preference. My vanilla cookies are now divided while my wife is getting the chocolate all to herself!

Better Than A Peanut Ban

One school district recently began putting EpiPens in its schools to improve its emergency preparedness. I think this is better than banning peanuts as it benefits all allergic kids and not just the peanut kids. I also didn't know that 20% of kids with anaphylaxis have their first reaction at school ... that is downright scary as they kids would not even own an EpiPen!

"In addition to obtaining the medication, Hall offered training sessions to teach school staff how to respond to an anaphylactic emergency. Each school has several trained employees, in case the school nurse is not available."

This is highly responsible by the school district. The parents in Hall district should be very proud of their education leaders' proactive, pragmatic approach to managing anaphylaxis.

M210 Needs You

Recently I posted about the proposed anaphylaxis legislation in BC. Entitled the "Anaphylactic Student Protection Act 2007", Bill M210 was proposed by MLA David Cubberly and has passed through its first reading. The next step is the upcoming second reading on April 16.

I urge you to get involved - regardless of where you live. There is a website dedicated to Bill M210 that allows you to look up contact information for MLAs, get more information on the actual bill and gather information from an FAQ.

The coolest feature of the site is labeled "a sample email in support of Bill M210" off the main page ... the link pulls up an pre-written, pre-addressed email that you can send to the Minister of Education and the Premier ... in about 5 seconds you can support this pending legislation.

Please send an email in support of Bill M210

It Takes A Village - Food Inspectors

Today I received a recall that bothered me.

The Canadian Food Inspection Agency (CFIA) and Tickleberry's are warning people with allergies to milk, soy, sulphites, peanuts and wheat proteins not to consume Tickleberry's Chocolate Covered Dried Fruit products described below. The affected products contain milk, soy, sulphites, peanuts and wheat which are not declared on the label. (Several) Tickleberry's Chocolate Covered Dried Fruit products, sold in 100 g packages, are affected by this alert. These products have been distributed nationally.

My concern with this recall is that it was a multiple allergy alert for a product that was measured in 100g kid-sized packages. I decided to pick up the phone and call Dale Hoy. It was an interesting conversation.

Eight years ago Dale's company had their labels reviewed by the Canada Food Inspection Agency. Since that time the rules have changed and due to a lack of awareness, Dale's company did not stay current. Labels were created for new products per the old rules and thus products did not include complete allergy labeling.

After a recent inspection it was determined that Dale's products did not comply with the new allergy labeling standards. The result is a voluntary recall, though Dale freely admits that the vast majority of the product is already sold. The company is based in BC but due to the inclusion of its products in gift baskets, 50,000 units of these products are spread across the country and are long ago in the hands of consumers.

Notice that this did not happen altruistically. The cost for a boutique manufacturer to revamp labeling is quite steep. Dale conceded that small manufacturers would not likely do this on their own. The food inspector is the person that triggered this 'voluntary' recall.

This plant produces fudge, ice cream, cookies and other products. Nuts, soy, milk, sulphites are all ingredients used in the plant. The bottom line is that without external intervention many producers would be going to market with outdated labeling that potentially puts kids at risk of fatal allergic reactions.

It takes a village to manage anaphylaxis and in this case the food inspector delivered.

Ambulance Chasing

Last week my wife dropped our daughter off at the Aquarium to go see the fish, dolphins and of course the beluga whales (cue the Raffi song!). On the way to pick up our daughter my wife passed an ambulance racing out of the park. Of course the first thing she thought of was that our daughter might be in the ambulance after having an anaphylactic reaction to peanuts.

It is amazing how your perspective on EVERYTHING changes with anaphylaxis. Unfortunately the hard-wired parental tendency to think of the worst case scenario is put to the test more times than we would like.

The good news is that our daughter was safely watching the dolphin show and no anaphylactic reaction took place. My wife breathed a sigh of relief.

This sort of thing happens to me all the time now ... it is a very strange thing to become accustomed to.

After Today, No Eggs Please

Easter might possibly be the official day of our daughter's allergy. The original Easter egg hunts were done with painted chicken eggs. She is allergic to raw egg and I am not sure that boiling them changes the chemistry sufficiently to avoid a reaction. Of course the modern twist on tradition is to use chocolate eggs. In theory that would be okay but only a minority of chocolate is manufactured in peanut-free facilities and even then we have the Cadbury mini-egg recall. The combination of these allergies makes an Easter Egg hunt a challenge.

This week I began to teach our daughter to say 'No Eggs Please' whenever she sees an egg. I am also teaching her to say 'No Peanuts Please' whenever somebody offers her food of any kind. She is getting the hang of it and we hope it will be one more defense against anaphylaxis.

Today the learning was interrupted. On the heels of learning to say 'No Eggs Please' whenever she sees an egg, today she awoke to coloured plastic eggs being hidden around the house for her first Easter Egg hunt. I know that is probably confusing to her but it had to be done. The annual Easter Egg hunt was one of the highlights each year in our family and it is a tradition I want to pass on.

Our daugher is into games, so the hunt was a huge hit. The fact that the eggs are not edible is irrelevant - I'm sure she had just as much fun as she would have if the eggs were chocolate. Of course, the irony is that the gummy candies we put inside were peanut free, but they have carnauba wax which can occasionally cause issues with eczema. Next year we'll hide plastic eggs that have toys inside - the whole 'food thing' is just too challenging sometimes!

We had great fun this morning ... our daughter was running around saying ... 'Hey Bunny! Where'd you put the eggs, Bunny?'.

Tomorrow we'll revert back to 'No Eggs Please'.

Wacky Birthday!

Somehow our daughter scored two birthdays this year ... hmm. For her birthdays we made Wacky Cake. I first heard of this egg and peanut free cake on various peanut blogs and thought we'd give it a try.

It was great! Very moist. Quite tasty. I would highly recommend this simple, simple recipe by Diana Rattray. There is certainly nothing sacrificed. Here's the recipe:

INGREDIENTS:

• 1 1/2 cups unbleached all-purpose flour
• 1 cup sugar
• 3 tablespoons unsweetened cocoa
• 1 teaspoon baking soda
• 1/2 teaspoon salt
• 1 teaspoon vanilla
• 1 teaspoon vinegar
• 5 tablespoons vegetable oil
• 1 cup cold water

PREPARATION:

In a large mixing bowl, mix flour, sugar, cocoa, soda and salt. Make three wells in the flour mixture. In one put vanilla; in another the vinegar, and in the third the oil. Pour the cold water over the mixture and stir until moistened. Pour into 8 x 8-inch pan. Bake at 350°F. oven for 25 to 30 minutes, or until it springs back when touched lightly.

Tragic Loss In BC

News broke last night of the tragic loss of a 13-year old girl in British Columbia due to food-related anaphylaxis. What I find so sad about this is that the young girl, Carley Kohnen, was said to always have her EpiPen as she had allergies to several foods including peanut and dairy products. Unfortunately this anaphylactic reaction happened when she was out with friends and without her EpiPen.

The timing of this unfortunate loss is eerie given the news and events of the past week including FAAN announcing increased plans to generate awareness in teens and closer to home the British Columbia equivalent of Sabrina's Law being tabled as a bill in the legislature.

As is the case with all parents in our community, Carley's father noted that he had been living with the fear of this possibility 24/7 since the day they discovered her allergy. When I read this story I followed the advice of Carley's mother: "Hug your child today, and tell them you love them."

Our thoughts are with the Kohnens today.