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.