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.

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 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.

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.

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!)

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.

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!

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.