Blog Interrupted

Not long after our daughter was diagnosed with anaphylaxis, I began talking to Anaphylaxis Canada (AC) about joining the team. This week I was happy to receive news that I have been appointed as a Director on the Anaphylaxis Canada board.

I have tried to adopt AC’s pragmatic and balanced approach when managing our daughter’s severe food allergy, both at home and in our community. After spending the past nine years on charitable boards, (most recently six years with Covenant House Vancouver), I am excited to offer my skills, energy and passion for the cause of food allergy and anaphylaxis, to Laurie Harada and her so-called ‘A-Team’.

As an Anaphylaxis Canada Director from British Columbia, I will focus on the development of a local presence in this province. In 2007 the BC Ministry of Education passed the “British Columbia Anaphylactic and Child Safety Framework” and the next step is to support those who will implement this important ministerial order.

My involvement with Anaphylaxis Canada will also include writing a column about our experiences as parents (details forthcoming). Unfortunately I will not have the bandwidth to author a column, become involved in British Columbia and author this blog, so NoPeanutsPlease will be offline for the forseeable future.

During the past 18 months you have visited the blog almost 12,000 times and enjoyed almost 200 posts. I thank you for your support and encouragement! It’s been a fabulous experience and has truly helped me in our journey as parents managing anaphylaxis.

Though I am disappointed to interrupt NoPeanutsPlease just as it was gaining significant momentum, I am very excited to be in a position to make an even greater contribution to the food allergy and anaphylaxis community.

Rhode Island Relaxes Peanut Ban

The state of Rhode Island has voted to relax a ban on peanut butter in schools. The good news is that the peanut ban is being replaced by a law whereby "affected schools would be required to develop policies that provide a safe environment for students with peanut/tree nut allergies."

As the parent of a child who is allergic to eggs and dogs, (in addition to peanuts), I wonder why Rhode Island's legislators did not expand the bill to provide protection for all students with severe food allergy or anaphylaxis. They could have followed the lead of several other states.

NoPeanuts Poll: Bullying

The most recent NoPeanuts poll asked "Has your child ever been bullied at school due to his/her food allergy?". Interestingly, 56% of the 41 respondents have children who are pre-school age, so of course this poll does not apply. For the 44% of readers who have school-age children, there is a 50-50 split between those who have and have not experienced bullying.

A new poll is now up: "Do you belong to a food allergy support group?"

Peanut Allergy 'Gone' In 5 Years? ... not likely

Last week Dr. Wesley Burks was quoted as saying that immunotherapy could help peanut allergic patients by increasing their tolerance to peanuts.

In 2007, Dr. Burks' team at Duke University reported that "five of seven children with severe peanut allergy were able, after two years of immunotherapy, to tolerate a dose of 7.8 grams of peanut flour, equivalent to eating more than 13 peanuts ". Last week Dr. Burks noted that "these studies offer the possibility of at least raising the threshold of the amount of peanut that it would take to cause a life-threatening allergic reaction; whether these types of treatments are likely to cause eventual clinical tolerance to develop remains to be seen."

The media has run with this story under headlines such as "Peanut Allergy Gone in Five Years?" or "Allergy Expert Says Expect Cure For Peanut Allergy In Five Years".

While tolerance to 10+ peanuts would absolutely make peanut allergic children safer, and likely prevent fatalities, these headlines are misleading and will raise false expectations with parents of allergic children. When I first saw the headlines I couldn't click through to the story fast enough!

These studies are important and we are actually exploring peanut immunotherapy for our daughter, as it reduces the risk of exposure to a small amount of the allergen. The difference between a fraction of a peanut and 13 peanuts is significant when a child has severe peanut allergy and anaphylaxis.

That being said, while immunotherapy holds great promise as a treatment, it is not a complete 'cure' for peanut allergy and I cannot imagine that peanut allergy will 'gone' in five years.

NoPeanuts On Charles Adler

Today I was interviewed on the Charles Adler show which is syndicated across Canada. Here is the link to the recording. (It will be on the site for 30 days and you will need to select 2pm on May 2, 2008.)

The interview went well. Charles asked several good questions and he was well prepared on topics ranging from Wesley Burks comments this week, to the Kentucky student being charged with wanton endangerment, to Trace Adkins comments on the Apprentice.

I actually took calls from listeners this time around which was new for me.

I am very glad that this issue is being well received. Charles noted today that he definitely learned something new from our conversation. I hope that his listeners found the interview insightful as well.

NoPeanuts On The Air

This week NoPeanutsPlease was quoted in a Globe & Mail article covering bullying and food allergy. As a result of the quote, we have been interviewed several times on the radio. My wife was interviewed on CBC radio in BC on Tuesday evening and I was on Corus in Alberta yesterday. Laura Bantock of Kamloops, also quoted by the Globe & Mail, was interview by CBC radio in the interior of BC.

I am also scheduled to be on the nationally-syndicated Charles Adler show tomorrow at 12pm PDT on Corus.

If you would like to listen to my interview on Corus Alberta the recording will be online for the next 30 days. To hear it, select the specific hour on the site: April 30, 2008 at 11am. (I am on the air about 10 minutes into the hour.)

I appreciate the media's interest in this story! It is important that people are aware of this issue.

NoPeanuts In The Globe & Mail

NoPeanuts was quoted in a Globe & Mail story about bullying. The story ran today and my comment was in relation to the case in Kentucky: "This is a pretty groundbreaking case," said Vancouver father Jeff Smith, who runs a blog called No Peanuts Please, through which parents have been swapping bullying tales after hearing of the case. "In some ways it's harsh. But it is an issue and it's becoming more well-known."

Bullying And Food Allergy ... cont'd

Here is some additional perspective from the mother of the child that was featured in the recent ABC news story about food allergy bullying.

The more I think about bullying and food allergy, the more convinced I become that these young bullies simply do not appreciate the risk associated with their actions. I suspect that the majority of these kids would be out of the spelling bee if they were given the word 'anaphylaxis'! Huh?

Bullying is about intimidation and gaining power over another person. It would appear to me that bullies do not intend to cause a fatal reaction in a food allergic child. Instead it appears that bullies frequently prefer to inflict their tactics "repeatedly and over time".

As a parent I know that in many cases a blended approach of 'carrot' and 'stick' are needed to mold proper behaviours. An example of the carrot approach would be telling your child that if she behaves herself then she will get a sticker. The (metaphorical) stick approach would be demonstrated by telling the child that bad behaviour will result in a timeout in the corner.

This same approach could apply to bullying.

Improved education and awareness as to the severity of anaphylaxis will help most kids understand the risks associated with food allergy bullying. Most children feel good about knowing that they can help make allergic kids safer (ie: the carrot approach).

Unfortunately, there will also be a group of bullies that need a deterrent. For these kids the police charges in Kentucky last week would serve as the metaphorical 'stick'.

NoPeanuts Poll: Changes To The Food Supply

In my last poll I asked you what you thought was the major factor in the increase in peanut allergy incidence. 41% of you think that it is changes in the food supply, not improved diagnosis and not the hygiene hypothesis.

A new poll is up.

Bullying And Food Allergy

It is interesting that the criminal charges laid this week in Kentucky comes just after an article on bullying by ABC. The article featured a case of bullying where a girl had an apparent reaction to the smell of a peanut butter cup that was opened in her vicinity. (The prevailing wisdom is that it takes an airborne particle to cause an 'odor reaction', though the odor of a peanut has been shown to cause a psychosomatic response.)

The article noted that the incidence of bullying is rising, though bullying is nothing new. In my school days I do not recall ever encountering food allergy, though bullying and intimidation were just something you dealt with. When most people think of bullying they conjure up images of physical conflict, though (as noted in the article) verbal abuse can be more serious.

Allergic Living recently wrote an article about children with food allergy developing anxiety. I surmise that bullying can help foster that anxiety.

Here are two cases in point. The VanEssendelft children in the ABC report, both of whom have peanut allergy, have been subjected to stressful situations:

• Sarah, 14, grew up with a group of girls that "attended birthday parties and play dates and had always kept a careful eye out for peanuts. Yet, still, the girls tried to test her allergy." Recently, however, these girls did not believe that her reaction to the odor of the peanut butter cup was real, so they decided to make a statement in the lunchroom by organizing a 'peanut party'. Thankfully a friend tipped Sarah off about the plan, telling her that the girls were bringing "everything peanut they can find, to watch your face blow up".

• David, 13, recently had a "kid in the locker room say, 'I'm going to put peanut butter on the ball and I'm going to serve it to you so you have to set it,'". Apparently peanut jokes are common from this kid and he has said he wants to see David use his auto-injector.

Kids can be harsh. Clearly they do not appreciate the risks associated with severe food allergy and anaphylaxis.

The article also quoted Anne Munoz Furlong, founder and CEO of FAAN. "Whenever we talk about kids with food allergies in schools, their friends are a huge influence and can keep them safe. We have very often had teenagers tell us that their friends are their body guards, their friends are their eyes and ears."

The teen years are hard enough. A food allergy adds another level of complexity. Though it would be difficult to go through school facing these issues, I would also suspect that a certain resiliency, responsibility and strength of character could develop as a result.

While others can certainly provide support and assistance, the allergic individual is ultimately the one responsible for managing their own allergy. Best wishes to all of the Sarahs and Davids out there.

Criminal Charges in Kentucky

Just this week I blogged about progress in anaphylaxis and food allergy legislation. These policies and guidelines endeavour to protect allergic children in the school environment, by implementing allergen avoidance measures and emergency protocols, should an exposure occur.

What we forget is that these guidelines serve to augment criminal laws that are already in place. This week a 13 year old boy in Kentucky was charged with felony wanton endangerment, after she sprinkled crumbled peanut butter cookies in the lunch box of another student with a severe allergy to peanuts. Thankfully the other child did not suffer a reaction.

What was this kid thinking? I know she is only 13, but as the parent of the allergic child this would be terrifying. Actually, as the parent of this 13 year old you might be even more terrified.

There were no prior issues between the two kids, so we have to assume that the 13 year old did not want to kill the other student. Based on that assumption, we only have one plausible scenario: that the girl simply did not take the allergy seriously. I am hoping that this was a prank or an experiment, as the kid in question did not truly believe he would cause serious harm. Perhaps it was on a dare?

(Note: subsequent to writing this post initially, one report indicated that the girl sprinkled the cookie in the allergic child's lunch 'to see what would happen'.)

The bottom line is that this is an extreme example of food allergy or anaphylaxis not being taken seriously. I actually empathize with people struggling to comprehend the severity of the disorder. Anaphylaxis is truly bizarre in that 99.9% of the time allergic children are perfectly healthy, notwithstanding unrelated health issues. I've had people say to me, "surely it is not possible for a peanut to kill a child within 15 minutes ... that's ridiculous!" I might not believe it myself, had I not witnessed our daughter's near fatal reaction on Boxing Day 2006.

Clearly there is work to be done in order to help the community understand that anaphylaxis and food allergy are a very real concern. The only benefit of this one student getting into trouble is that she can be made into an example for others.

If you are the parent of an allergic child, don't be angry at this kid. Instead, try to understand that anaphylaxis awareness is still not ubiquitous. Your own child would benefit if you leveraged this example in your community, so that others may learn from it.

A death in this situation would have been devastating to the entire school population, not just the family of the allergic child. One positive outcome is that the school district and the police recognized the gravity of the situation and took strong action. There are actually two classes of wanton endangerment, one a misdemeanour and one a felony.

The fact that the police charged the girl with the felony charge speaks volumes about just how serious they perceived this act to be. The misdemeanour charge applies if the accused places another person in danger of physical injury. The felony charge requires "extreme indifference to the value of human life" and a "substantial danger of death or serious physical injury".

Whether or not the child is found guilty, there is a silver lining to this unfortunate situation. The decision of the police to press this greater charge shows that they truly get it. This should also send a strong message to schoolyard bullies who tease children by chasing them with peanuts. This case sets a precedent and sends a clear message that similar actions will not be tolerated - not by schools, and not by the police.

I actually hope that the girl in question is shown leniency. A clear message has already been sent and I suspect she has learned her lesson. Perhaps a suitable punishment would be to have her perform community service. If she was to speak to schools, teachers and other students via a short educational video, they too would learn from this situation.

(Note: my initial source indicated that the accused was a boy. Subsequent reports have indicated that the accused is actually a girl. I have edited the text.)

Do You Think This Is Funny?

Lorraine Sommerfeld, of the Toronto Star, was at a charity fundraiser this past week. There was a comedian performing at the event and during a rant about how today's children live a relatively sheltered existence, he decided to start in on peanut allergic children.

"He wanted to know what the deal was with kids today and something as harmless as a peanut. He held his thumb and forefinger an inch apart and said, 'If something this big is gonna take a kid out, guess what? He's not gonna make it.'"

It's disturbing, though perhaps not surprising, that anybody would find this funny ... though people did laugh. Others in the audience shared my dismay at the failed attempt to derive petty humour from the deepest, darkest fear for parents of an allergic child.

I concur with Lorraine's comment that joking about "a kid's affliction with a life-threatening allergy isn't even close to being fair." There is little I find funny about anaphylaxis.

Kudos to Lorraine for calling this guy out in the Toronto Star without giving him the satisfaction of having his name in the paper. Well played.

To Eat, Or Not To Eat (Peanuts)

When we first learned of our daughter's severe peanut allergy and anaphylaxis, I remember wondering if we caused it. My wife ate peanuts during pregnancy and the theory of the day was that eating peanuts during pregnancy increased the risk that the child would have food allergy.

I was reminded of this when I read an article today about the rising prevalence of food allergy. In the article a parent noted that parents of allergic children "carry a lot of guilt around". She added that as the parent of an allergic child "you look at your sweet little child and wonder what did I do and what didn't I do?"

My wife did not avoid peanuts during either pregnancy, as we still did not know the severity of our daughter's food allergy before our second child was born.

We often wondered if we 'caused' the allergy.

The prevailing wisdom is that peanuts should be avoided if you have a history of allergy in your family. However, recent research in the UK seems to indicate otherwise. "Mothers of 77 per cent of children sensitized to peanuts had avoided peanuts during pregnancy. In this cohort study, maternal consumption of peanuts during pregnancy was not associated with peanut sensitization in the infant."

On the heels of this and related research, the UK government has gone so far as to suggest that expectant mothers who do not eat peanuts during pregnancy may increase the risk that their child will develop food allergies. "Lord May of Oxford said: 'It is quite striking that the increase in peanut allergies is rather in step with the increasing Government advice not to expose tiny children to them.'" The UK government is now formally reviewing its recommendation to avoid peanuts during pregnancy.

As is the case with most other things related to allergy, there is no clear answer to key questions, such as 'What causes food allergy?' or 'Should the major allergens be avoided during pregnancy?'. There is no definitive answer at this point.

The bottom line is that you need to make the decision that you feel most comfortable with, after consultation with your allergist.

Show 'Em You're A Tiger

This is very cool, though I'm sure that isn't something that the Tigers can do for all fans. They sure made one family's day!

"I have have three big Detroit Tiger fans ... and have lamented the fact that we could not all go to a game since (my son was diagnosed) with (peanut allergy). ... (My husband) wanted to go to a game ... so I called the Tigers organization and asked if they had any plan or accommodations for kids with food allergies. ... About an hour later (they) ... offered me an 18 person party suite for NO CHARGE! I can't believe it! We are very excited and now they whole extended family will be able to join us in our own suite."

Play ball!

Not So Simplesse After All

I learn something new every day with respect to our daughter's allergies and this week I learned enough for a month! Tonight I was reviewing What's To Eat, a food allergy cookbook, and was reminded that Simplesse is made from dairy and egg white. The good news, at least for us, is that the egg white is cooked during processing, and our daughter only seems to react to raw egg white. There are many names for egg and it is hard to remember them all. At least in Canada a label must read "egg and milk protein" when it contains Simplesse.

How A Bill Becomes A Law

In the past two years there has been incredible momentum and success in legislative advocacy. Across North America there have been laws, recommendations and ministerial orders passed.

In BC we had a Ministerial Order passed in 2007 which requires school districts to develop anaphylaxis policies in order to protect allergic children. At the end of March 2008 Washington became the most recent state to pass actual law for the same.

FAAN's website indicates that there are now 17 states that have some form of government legislation, guidelines or policy requiring school districts to develop strategies that help reduce the risk for students with food allergy and anaphylaxis. In addition the vast majority of states now have policy governing students carrying prescribed epinephrine at school.

In Canada 90% of public schools have either standard policy, a policy advisory or a ministerial order (per Anaphylaxis Canada).

These achievements are a direct result of the effort and dedication of a large number of people in our community. Of course it also has required the support of key advocates and government sponsors. Thanks to everybody that has helped make such a tremendous difference.

NoPeanuts Poll: 75% To Have Lifelong Allergy?

I ran a poll on the site asking whether you thought your child would outgrow his or her allergies. 75% of you expect your child to live with lifelong food allergy. For peanut allergic kids this is perhaps the reality. For children who are allergic to milk or egg the prognosis is better with 70-80% outgrowing their allergy by age 16, though it is possibly taking up to 13 years longer for that to happen.

Anaphylaxis Canada Comes To Vancouver!

This past week I had the pleasure of attending Anaphylaxis Canada’s inaugural BC Conference held in Vancouver. The event covered two days, with a training session for spokespeople on Saturday and the formal conference agenda on Sunday.

This was my first Anaphylaxis Canada event and I was immediately struck by the sense of camaraderie and common purpose that the participants shared.

For those unable to attend, there were the NoPeanuts event highlights:

• Marilyn Allen’s Saturday training session was excellent. She has the utmost credibility in the allergy community and I learned a great deal from her. Marilyn has mastered the art of walking the fine line between firm advocacy and empathy for other stakeholders.
  

• Laurie Harada and her Anaphylaxis Canada ‘A-Team’ put on a fabulous event. You are welcome in BC any time!
  

• It was very cool to meet several regular readers of this blog. Our conversations will keep me going when I post into the faceless blogosphere at 1am! Thanks for your support.
  

• The breadth and depth of the Sunday speakers was excellent. We covered everything from Dr. Janice Jonega’s novel allergy eating plan to BJ Chute’s advice for rural folks to ‘leave the light on’ for the paramedics; and from Dr. Donald Stark’s reminder that ‘accidents are never planned’ to Laurie Harada & Gwen Smith’s advice to generate ‘the right amount of anxiety’ in our kids without instilling fear.
  

• Meeting Kyle Dine, of Analphylaxis Canada was refreshing. Kyle is a recent college graduate and has dealt with anaphylaxis his entire life. As a parent of a toddler with anaphylaxis, it is reassuring to see a confident young man who has clearly taken over responsibility for his own allergy.

• The biggest highlight had to be finally meeting Sara and Mike Shannon in person. At the end of the conference, Sara gave the participants a print featuring angels who deem themselves ‘Beacons of Hope’. We are going to frame the drawing for our daughter, as it was made by Sabrina Shannon in the year leading up to her untimely death in September 2003. Sabrina is indeed our beacon of hope.

Thanks again to the team at Anaphylaxis Canada, the event's sponsors and all of the volunteers. Of course, a big thank you as well to all of those who attended.

The NoPeanuts Playdate

NoPeanutsPlease is about to reach a significant milestone ... 10,000 visitors! To celebrate I have decided to host an event in Vancouver during Food Allergy Awareness Week (May 11-17).

The first-ever NoPeanuts Playdate will be held at 11am on Saturday, May 17 at a local Vancouver park (TBD).

If you are in the Vancouver area and interested in attending the first NoPeanuts Playdate, please email me. Of course allergy friendly snacks will be provided ... please let me know in advance what allergies you are managing and I will endeavour to provide treats that are safe for everybody. (I'm up for the challenge!)

'Free' At Last

Regular readers will know that I have an issue with unshelled peanuts at sporting events. It's very dangerous for those with peanut allergies as the dust and shell debris are generously distributed within a six foot radius of the person actually enjoying the peanuts.

The last time I brought our daughter to a Canucks game, a fan threw an unshelled peanut out of the upper section (after a bad call by the referee) ... as luck would have it, the peanut landed right on my daughters seat! My heart skipped a beat but I do not think she even noticed.

Just this week I posted about the Nashua Pride baseball team offering a peanut free section for its games. The AAA Rochester Red Wings have gone one step further, offering an allergy-free concession stand called 'Free'. In addition the team has designated an entire area of seating in left field a 'peanut and tree-nut free zone'.

The allergy free concession stand is very progressive thinking! I actually prefer it to the peanut free zone in the outfield.

So why did they take action with the food they are serving fans? Naomi Silver, chief operating officer of the Red Wings, said the idea came about as a result of "several fan inquiries." Of course it probably didn't hurt that Ms. Silver's son has a peanut allergy.

The irony is that the Wings are the "oldest and longest running minor league franchise in the history of professional sports", yet they are showing some of the most progressive thinking in terms of addressing the issue of food allergy at sporting events.

Let's hope that 'Free' excels as a AAA baseball prospect and gets promoted to the big leagues in the near future. 'Free' could possibly become a multi-sport phenom with Dave Nonis, Canucks GM, looking to make several moves in the offseason.

Perhaps one day I'll be able to go to a Canucks game without having peanut shells on my shoes and pant legs when I return home.

Air Peanuts Now Boarding

I read an article today from CTV Winnipeg, in which a mother was contending that "her daughter's spring break was ruined because of an airline policy that can't guarantee safety for passengers with severe food allergies."

I have two issues with this contention.

First of all, like it or not, airlines cannot guarantee the safety of ANY passenger. Though the incidence of medical emergency from any and all causes has doubled in recent years from 19 to 35 per 1M passengers, the increase is primarily due to the "rising number of older passengers". There are multiple safety concerns facing airlines and they cannot be expected to provide a 100% safety guarantee, short of not allowing passengers with anaphylaxis to fly.

My second issue is with the sensationalism of the statement that West Jet ruined spring break. That type of rhetoric serves only to illicit a forceful, and opposite, response from the non-allergic public. Those dealing with food allergies are best-served to remain calm and stick with facts and logic when raising their concerns.

Notwithstanding the fact that airlines cannot guarantee safety, there are precautions that travelers and airlines can take.

What can airlines do to (easily) accommodate allergic passengers?
In multiple posts I have proposed that a very simple procedure that would significantly minimize risk, without unreasonably inconveniencing other passengers.

My simple proposal:
The airline crew should announce, as a courtesy, that there is a peanut allergic passenger on board and that it would be best for people to not eat peanuts, especially in the rows in close proximity to the passenger.

I have to believe that most reasonable people, upon hearing such an announcement, would forgo their peanuts to ensure the safety of an unsuspecting allergic child.

Air Canada recently followed this procedure for us and it worked perfectly. Other passengers were more than happy to help. It was a simple, practical announcement that made sure passengers were aware without alarming them. This is relatively easy for peanuts as airlines no longer serve them, and only those passengers who brought peanuts on board would be negatively affected. This could be somewhat more difficult for a cashew allergy since Air Canada sells those in-flight.

This relatively minor concession is worth the risk. In the above-noted post I told the story of another flight (when I was traveling without my daughter) and a passenger directly behind me opened a bag of peanuts at 7am. During that flight two peanuts rolled down under my seat ... that is a significant risk factor for my daughter and if we have to make an emergency landing everybody is inconvenienced.

an-uh-fuh-lak-sis

I am often struck by life's little ironies. One such irony is that despite the volume of Blogger content covering severe food allergy, Google spell check does not recognize the word anaphylaxis.

Proud of the Nashua Pride

As regular readers will know, I have a strong opinion that unshelled peanuts should be removed from larger sporting venues. This week the Nashua Pride, a minor pro baseball team, announced a peanut free section for their home games. I am fine with people eating peanuts at these events, but the unshelled variety of peanuts poses an unacceptable risk to people in the vicinity, should they have a peanut allergy.

Many times we have come home from Canucks games to find peanut debris on our shoes, pants and jackets. I would certainly be uncomfortable watching the game with my peanut allergic daughter if somebody nearby was spreading peanut shells all over the floor.

I am happy to see organizations taking a first step toward what will hopefully be removal of unshelled peanuts entirely.

Global TV News Feature

For those of you in the Vancouver area, please note that tonight our family will be featured on Global TV as part of a news hour series on anaphylaxis and severe food allergy. The series is a run-up to Anaphylaxis Canada's BC Conference, being held in Vancouver on Sunday, April 6.

We will be featured somewhere between 6-7pm during Global TV's 6 o'clock News Hour. The local channel is 11 (Shaw).

This series is great for local exposure of severe food allergy and anaphylaxis.

Allergic Barbie

Our 3 year old daughter is severely allergic to peanuts and, to a lesser extent is allergic to egg. One of the challenges of managing an allergy in a young child is to ensure that she knows that peanuts can 'make her sick' while not causing her to have overly heightened anxiety.

Recently I tried to get the point across by telling her that her Barbie was allergic to peanuts and eggs. I wanted her to understand that her 'allergic Barbie' could do all the things her other Barbies could do as long as she did not eat peanuts or eggs. Not surprisingly our daughter has latched onto the 'allergic Barbie' and become somewhat protective.

Tonight she took the game to a whole new level.

Apparently at 6:25 PM this evening 'Allergic Barbie' ate a peanut. Our daughter surprised me by playing out an entire emergency situation. She did not panic and dealt with emergency swiftly. First she took down Barbie's pants and used a needle in her doctor's kit to give Barbie an 'EpiPen'. She then used her Elmo phone to call the 'ambuhlance' and had Mommy open the front door to let the paramedics in. The paramedics helped make Barbie safe and everybody went to the 'hostibal' together.

I was very impressed. Since our daughter is three, she would not likely have full comprehension of the seriousness of an emergency. She simply knows that Barbie is 'sick' after eating a peanut, and she wants to help make her better. That being said, the emergency game clearly demonstrates that she knows to act fast, use an auto-injector and call an ambulance. Understanding the basics of an allergy emergency will make her safer.

In this month's issue of Allergic Living there is an article about children developing heightened anxiety as a result of managing their severe food allergy. The Barbie games we are playing in our home seem to be a healthy way to deal with a serious health issue without shocking our daughter.

It will be interesting to see how this develops over time.

Villager of Distinction: Trace Adkins

The Villager of Distinction accolade goes to a person or group that has done something remarkable or special for those with severe allergies. The latest recipient of this accolade is Trace Adkins, the renowned country music star. Let me explain ...

Tonight my wife and I watched the finale of Donald Trump's Celebrity Apprentice. We have watched the Apprentice occasionally during its run. At first I have to admit that the celebrity version of the show seemed to be ill-conceived, yet for some reason I was drawn in.

The basic premise was that celebrities would play the game in the normal fashion, but instead of getting 'hired' by Mr. Trump, they would win $250,000 for the charity of their choice.

Over the course of the game I was struck by the way Trace Adkins carried himself. The man of few words seldom spoke but when he did it was often very insightful and noteworthy.

It was only in the last few episodes that I realized that Trace was supporting FAAN!

Trace has a six year old daughter with severe food allergies. In the finale Trace told Mr. Trump that he was playing for the "3 million fathers" who send their children to school living in the fear that they may not come home. He spoke with a passion that was seldom seen from him during the game. Being one of those fathers I was deeply moved by the emotion behind his words.

Trace is receiving this accolade for two reasons. As you can see from the enclosed Google Trends chart, there was a significant spike in Google searches for 'food allergy' after the March 6 episode of the Apprentice. It was in that episode where Trace was project manager and was able to talk about about FAAN.

I am also acknowledging Trace for the way in which he carried himself as an ambassador for the allergy community. He played hard but always with integrity, and he never lost sight of his motivation for playing in the first place ... his six year old daughter who suffers from severe food allergies. Very touching.

Well done Trace!

Please note: You can support Trace and FAAN by purchasing "You're Gonna Miss This - Single" at iTunes ... all proceeds go to FAAN and the charity single is only on sale for two weeks!

Eggs Still Here!

What a scare we had on Friday night.

For the second time in only three birthdays Daddy again triggered an egg reaction. As many of you know, we recently received word that our daughter's egg allergy disappeared. What we have since realized is that it is gone as long as the eggs are even moderately cooked, e.g. boiled, fried or in baked goods.

On Friday Daddy was baking Madeleine a cake. (Yes, that's right ... Daddy was baking!) As a kid I always enjoyed relieving the mixer's beaters of their cake batter. Madeleine was helping me make the cakes and she asked to lick the beaters. Now that we were free of the egg allergy I thought it would be great fun.

It was fun until she developed at least a dozen large wheals and hives on her face and hands. She then became short of breath and her voice turned raspy and faint. We were very scared but remained calm. This exact scenario plays out in our minds multiple times each day.

We started with Benadryl ... 1 tsp, 2 tsp ... okay, 3 tsp ... finally the reaction stopped advancing.

The scary thing was not the hives but the fact that Madeleine's voice faded and became very raspy. She could not yell, though she could talk quietly. Once we saw the laboured breathing we reached for the autoinjector but the third tsp of Benadryl halted the reaction and over the next hour the wheals and red patches subsided.

The good news is that once the cake was baked, Madeleine was able to eat it without incident.

It seems that the threshold for an egg reaction has increased. In the past, anything short of commercially baked pasta resulted in a reaction. Now it seems that even the smallest amount of heat, such as boiling an egg, is sufficient to prevent reaction.

The batter that she ate contained 8 eggs. Turns out that raw egg is still an issue for our daughter but at least now we know!

An Anaphylaxis Mystery

In December I wrote about the six cases of anaphylaxis that were apparently related to a Merck Frosst vaccine for measles, mumps and rubella.

This story has taken a strange twist.

Merck's vaccine has been cleared of having caused the allergic reactions. Health care providers will continue to investigate what exactly did cause the reactions.

Book Review: Allie the Allergic Elephant

One of the things our daughter most enjoys is reading. She just loves books.

Allie the Allergic Elephant is an engaging kids book, and it is a great addition to the bookshelf for any child, but especially those young children who have food allergies.

Our daughter was engaged from start to finish and was amazed that Allie wears a 'special bracelet' to tell people she's allergic'. She also enjoys finding the bracelet on Allie's leg as it repeats throughout the book. This has been particularly helpful in getting our daughter to wear her Medic Alert bracelet. Whenever we encounter resistance we simply remind our daughter that Allie wears her bracelet whenever she goes outside, and she should do the same.

The book is written well for kids, moves at the right pace and is quite educational. It provides examples of what happens to an elephant who is having an anaphylactic reaction. Allie also shows children how to say 'no thank you' when offered a peanut and gives examples of foods that are safe or unsafe. Though other books incorporate similar allergy concepts, Nicole Smith and Maggie Nichols have successfully translated these concepts into terms that a three year old can understand.

It is very hard for parents to comprehend food allergy and even harder for young children. Allie the Elephant is a staple in our regular reading rotation and I would encourage you to pick up a copy if you have a child with food allergies. Our daughter has latched onto Allie as a soul mate and I have already put in my order for a stuffed Allie (complete with Medic Alert bracelet) should one ever come onto the market.

We're Eggstatic!

I blogged earlier this week about our recent Eggsellent News and that we were expecting an upcoming egg challenge for our daughter. Well today was the big day. This morning I made French toast for Madeleine for the first time. We put the French toast in a container and headed to see the allergist.

The thought of sitting with a three year old for over three hours while she ate French toast in tiny increments was something less than optimal, but given the circumstances I was excited.

Our allergist started her with one small bite of French toast. We waited fifteen minutes with bated breath ... no hives, no redness ... we were in the clear! Or so we thought ... the second bite was double the first. After 5 minutes my heart sank. There on Madeleine's cheek was a single, large wheal. I was very disappointed.

I was afraid that the challenge would be stopped at that point, but after fifteen minutes where no additional hives appeared our allergist decided to keep the challenge going.

The portion of French toast was doubled again ... up to a quarter slice. We were ecstatic to see the first hive disappear and no additional hives surfaced, save one small dot on her hand.

Things had really turned and it was now safe to be very optimistic!

After waiting another hour after Madeleine ate one more half slice of French toast, we were given the all clear and in her honour Saturdays will officially be "French Toast Day" in our home!

The next steps are to ensure that she eats egg at least three times a week and to monitor any reactions. The addition of egg to her regular breakfast routine will help her develop tolerance.

This is huge news. Though I knew I would be happy, I have to admit that I was surprised by the wave of relief I felt once we were fairly certain that her anaphylaxis to egg had finally dissipated. I think that after two years you just learn to live with the allergy. In some strange sort of way I actually miss it a little because it was part of the fabric of who our daughter was. That being said, we will happily kiss the egg allergy goodbye!

Let's hope to have a similar result in two years when we revisit the peanut allergy.

Education Crisis (Averted?)

I read an article tonight about an apparent 'crisis' situation in one Australian school region. It seems that in New South Wales "nearly every classroom" has a child with a serious allergy. I have blogged before about the fear that teachers have in dealing with serious allergy. It can be very traumatic even to imagine that you would have to give a child an injection from an epinephrine auto-injector during an emergency.

That being said, I was surprised to read the following passage. "'From a legal point of view, we would advise teachers not to medicate because they do not have qualifications,' Ms O'Halloran said. 'Obviously, if there's an emergency, the teachers need to act but ... it's very problematic.'"

It is no wonder that there is a (perceived) 'crisis' given that the teachers' federation leadership is implying that teachers need formal medical training to administer an EpiPen. That just adds to the anxiety teachers already feel. The teachers' federation is likely taking this position to bolster its efforts to secure a dedicated nurse for every school.

While it would be helpful (for a variety of health and safety reasons) to have a nurse in every school, teachers need not fear an EpiPen or Twinject. They do require training of course but the device is easy to use, and it is generally pretty clear when an emergency situation requires its application. Furthermore, there is minimal risk associated with administering an 'unnecessary' EpiPen dose in a less-serious situation that did not actually require epinephrine, but was 'mistaken' for anaphylaxis.

Though I am not a lawyer I would also question the validity of the legal advice the federation offers to its members. Teachers likely have 'duty to rescue' exposure should they be equipped to aid a child in an emergency situation and take no action. I think they would have no choice but to help.

In addition they would likely (hopefully?) fall under some degree of 'Good Samaritan' protection, codified or not, should something untoward happen during the attempted 'rescue'. I did a quick search for the presence of said legislation in Australia and though it appears that some form of law has been passed, it was not clear whether it extends to teachers.

There is also non sequitur in the federations legal advice to abstain from giving medical treatment. Why would a teacher administer emergency treatment in a situation other than an emergency?

Eggsellent News

It seems that our daughter's egg allergy is gone. We made a switch to a new allergist in November and not only do we prefer our pediatric allergist, we have good news to report on the egg front.

First of all, find a pediatric allergist!
Back in November we took our daughter in to see a new allergist. We did not hit it off with our first allergist and I left the office very concerned about the level of care our daughter received. I discussed my concerns with a pediatrician that I know, and he confirmed that given the rapid rate of change in allergy research a pediatric allergist was the way to go. He also knew an allergist in our area that was very current with respect to her knowledge and helped us get an appointment.

In our first visit with our new allergist we did a new skin prick test (SPT). The first allergist did a SPT when Madeleine's arm was covered in so much eczema that there was barely enough room on her arm to do the testing. Many people (including us) have questioned whether we should not have been sent home to return another day.

Our first allergist also did not break the skin when he did the skin prick test (SPT) for peanut. Apparently current research indicates that the chances of a SPT triggering anaphylaxis are sufficiently low to allow the skin to be broken, especially since the test is administered in the care of an allergist.

Our new allergist is great with our daughter and very current in her research (at least from our vantage point). I am very glad that we made the switch.

Eggsellent News!
Of course it helps that in our first visit with our pediatric allergist that Madeleine did not react to egg in her skin prick test, though dogs and peanuts are still a concern. The negative SPT for egg was followed up with a blood test that confirmed that the egg allergy does appear to be gone. Let's hope that's true!

On Monday we have our egg challenge ... stay tuned for the results!

Mixed results on peanut
Though we were excited about the results on the egg front, it was interesting to learn the results of the peanut allergy. Though the SPT produced a 14mm wheal, which is very large, it has been shown (1) that an 8mm wheal is a reliable indicator of a peanut allergy incidence, but has a weaker correlation with the allergy's severity. "The positive predictive accuracy of the (SPT) is only in the range of 50-60%, meaning that a positive reaction will only predict a positive food challenge in 50-60% of patients." (2)

"No Peanuts, Please"
So it appears that we are in the clear on egg and given the mixed results for peanut, we may have good news there in a couple of years. In the interim, it's "No Peanuts, Please" for Madeleine.


References
1 - Hill DJ, Heine RG, Hosking CS, Pediatr Allergy Immunol, Oct 2004
2 - A. Ives, J. O'B. Hourihane, Current Paediatrics, Oct 2002

Bisphenol, Say What?

Over the past year and a half I have read countless articles on the possible risks of early exposure to the severe food allergens. You ask yourself questions ... is there a risk due to soy being in formula? when should we introduce cow's milk? etc, etc, etc. All parents ask questions like these but as parents who manage a severe food allergy, we have certainly seen this self-questioning intensify.

The irony is that we spent all of this energy on optimizing the contents of our baby bottles, while it might actually be the bottles themselves that are a greater concern.

The news media and blogosphere have been heavily engaged in the debate on bisphenol A (BPA). The concern is that BPA mimics the hormone estrogen and even in minute quantities might lead to several health concerns. The only good news in the article referenced above is that once our Gerber and Avent bottles cool it appears that the BPA no longer leaches in to the liquid. In other words, though BPA would possibly leach in the dishwasher, the fact that we steam our bottle milk using an espresso machine, versus 'nuking' the bottles in the microwave, might possibly limit the exposure.

It strikes me that the BPA scare has a parallel with the concerns over the apparent increase in the incidence of childhood food allergy. We do not know whether early introduction of peanuts causes peanut allergy, nor do we know whether the use of bottles containing BPA really causes early onset of puberty or cancer over the long term.

The chemical industry contends that BPA in baby bottles "is not a risk to human health at the extremely low levels to which consumers might be exposed."

Forgive me if I do not take your word for it.

We will be replacing our bottles today.

Rounding To Zero

There has been recent press about the fact that the rise in the incidence of food allergy may not be based on sound data. Authors have referred to anaphylaxis fatality estimates as a 'wild guess' or cited research that indicates that "the incidence of food allergy is not on the rise".

Does this matter? Yes and no.

It matters insofar as increasing food allergy incidence makes for good press and has generated significant awareness. It matters insofar that as food allergy becomes more common children with severe food allergy would be be afforded protection for their life threatening disability.

On the flip side the statistics do not really that much in our home. Though food allergy incidence in children is in the 5-6% range, it is 100% in our children. (Our second daughter has had a mild allergic reaction to mushrooms). Which number do you think is more important in our home?

The math is also less relevant since even a single child should be afforded protection in a school setting. It is critical that food allergic children participate equally with their peers at school and in social gatherings.

Overall I do hope that the incidence of allergy is lower. Though we have become comfortable with the management of out daughters' allergies, it would be great if fewer parents have to manage a severe food allergy. Though the allergy is a key part of what makes our daughter who she is, living with a constant fear of an anaphyalctic reaction is very difficult for parents.

Martha Stewart Living (With Allergies)?

The staff at Martha Stewart are considering ideas for new publications.

One of the ideas being considered is a magazine dedicated to people who are living with food allergies or sensitivities. Here is the summary from Alexis, the Deputy Home Editor: "a special magazine that offers delicious allergy-friendly recipes, making life for people with food allergies and sensitivities easier and more delicious ... I’d like to empower people to make great recipes even if they can't use all the standard ingredients."

To vote head to the Martha Stewart blog.

Right now the allergy publication leads the way with 58% of 543,000 votes. A pet lovers magazine is in second place with 26%.

Surely awareness of food allergies would continue to grow, should there be a publication on the shelves with the Martha Stewart marketing machine behind it.

Next Stop Please

I read an article tonight about a family that is suing Subway because their daughter had a fatal reaction to peanut in one of their restaurants. This case is very interesting. The key question will likely be whether or not Subway exercised sufficient care in the way it handled food.

I have received emails and read message board posts about Subway's careless food handling practices, at least with respect to severe food allergy. Based on first-hand observation I have often seen Subway employees go straight from handling cookies to handling sandwich ingredients. The risk of cross-contamination is obvious and I would never let my daughter eat Subway due to her severe peanut allergy.

Whether or not this lawsuit is successful, look for the case to have a major impact on how restaurants operate. What do you think corporate lawyers will say about the heightened risk associated with food allergy after this incident?

Though the knee jerk reaction will likely be for peanut cookies to be removed from Subway stores, there are other allergies to consider and what is really needed is comprehensive food allergy training and awareness for employees. Staff in these restaurants are often young and do not seem to appreciate the seriousness of severe food allergy.

My deepest condolences to this young girl's family.