Gunshy

A Reuters article caught my eye tonight. It talked about anaphylaxis in general and specifically mentioned that many parents are apprehensive in using an EpiPen. I have blogged about the fact that teachers and other care givers are frightened by the thought of using an EpiPen to save a child's life.

Parents too are frightened, and perhaps even to a great extent since it is their child's life that is hanging in the balance. I tend to be calm in the moment of an emergency and would not hesitate to use an EpiPen. The statistics say that there is a reasonable chance that we will have to do this. Am I ready? Yes. Would I use the term 'comfortable' to described how I feel about the thought of having to save our daughter's life with an EpiPen? No.

Be ready, but don't feel bad if the thought of using an EpiPen on your child makes you queasy. I think I would be more concerned if it didn't.

The bottom line however is that in the event of an emergency, you need to be able to put your fears aside and act quickly. There would be no time to waste. You would need to be strong!

I would be interested in comments from those who have had to do this.

Duke Immunotherapy Trials

For those of you who are not aware of the Duke immunotherapy trials, this is worth reading.

Dr. Scott Nash of Duke presented at the 2007 Annual Meeting of the American Academy of Allergy, Asthma and Immunology in San Diego this past Saturday.

I have covered the Duke trials before and I have actually interviewed Dr. Wesley Burks, who is leading the project. I am overdue in posting my interview to the blog - I'll get it done this week!

This trial holds significant promise for the peanut allergic ... there are many questions still to be answered but in my opinion this is the best hope there is for a 'cure' today.

Xolair

I posted in January about current peanut allergy research. I noted that Xolair, an asthma treatment that nets Genentech over $400M per year in revenue, could possibly be used in the treatment of anaphylactic food allergies. However, I did note that the cost of the annual treatment could be as high as $10k.

This week the FDA required a warning label for Xolair due to the drug apparently causing anaphylaxis in some patients (specifically it occurred in approximately 'one in a thousand cases').

I suspect that a drug that causes anaphylaxis in some patients, however remote the risk is, might not be useful in the treatment of anaphylaxis. Perhaps Genetech will now revisit research into TNX-901?

Air Peanut

Today I flew for the first time with our daughter since we learned of her severe peanut allergy. I was not really that concerned but certainly made sure I was prepared. Though I did forget the flannel crib sheet (to cover our seat) I had wipes, snacks, water and the usual assortment of snacks from home. Of course Benadryl and two EpiPens were in the bag as well.

My wife called Transport Canada and they noted that EpiPens were fine to bring through security in Canada but if we traveled to the US we would need to have a doctor’s note to bring them on board.

We also called ahead to West Jet. The woman on the phone was helpful but noted that they ‘couldn’t guarantee a peanut free flight’. West Jet does not serve peanuts but passengers could bring peanuts on board. She also said to make airline staff aware of the allergy at check-in time so that I could board early. In addition, she said that the inflight crew could make an announcement to other passengers letting them know that a peanut allergic child was on board and that it would be appreciated if people refrained from eating peanut snacks.

I was impressed that West Jet would be so accommodating … however, it seems that these policies did not make their way to the airport.
When I arrived at YVR I let the check-in staff know of our daughter's allergy. I was met with a look of ‘what would you like me to do?’ and the stock ‘we can’t guarantee a peanut free flight’ statement. I told her that I was just letting her know as customer service thought it would be a good idea.

I let it go and moved on.

After convincing my daughter that our baggage would return to us even though I sent it down the belt, we went through security. I found it ironic that security was more concerned with the bottle of Benadryl we had than the two EpiPens. Liquids are the concern of the day it seems.

We arrived at the gate just prior to boarding. I went up to the gate agent and explained to her that our daughter had a severe peanut allergy and I was told to let the staff know. She gave me the same look of ‘what would you like me to do?’ and the stock ‘we can’t guarantee a peanut free flight’ speech. With a note of condescension she added, ‘tell the flight crew; there’s nothing I can do’. Then she turned away and went back to work.

Again, I let it go and moved on.

We boarded early and I pulled out the wipes to clean the surfaces around our seats. During a stopover, cleaning crews pick up visible garbage and recycling but do not have time to clean surfaces. I am not sure what the cleaning schedule is but I was appalled today at the layer of grime that covered the windows, meal trays and the console buttons. Given that my daughter apparently needs to press her face to the window to see the mountains, this is a concern for all kids and especially those with allergies.

I also informed the flight staff of the allergy. The attendant noted the allergy and again started in on the 'we can't ensure a peanut free flight' speech ... I told her I knew and that I understood but I was told to let her know.After the first series of announcements did not include a mention of our peanut allergy, I motioned for the flight attendant as she walked past. I mentioned that customer service noted that she could make an announcement. Again I got the ‘we can’t guarantee a peanut free flight’ which was followed up by ‘if we announce anything about peanuts then we have legal exposure’.

So there it was. West Jet’s policy on accommodating a peanut allergy is to warn us four times that they cannot guarantee a peanut free flight and then do nothing else for fear of a lawsuit should an allergic reaction occur.

I was really disappointed with their service. I expected better from West Jet given that their brand is based on being friendly. When it comes to peanut allergy they really missed the mark. I was not really asking for anything special. The expectation of an announcement was due to our conversation with customer service, and frankly the announcement would be a good idea.

Instead, they did nothing to accommodate my daughter’s allergy and made me feel as though I was being a ridiculous ‘peanut parent’. Nothing could be further from the truth.

West Jet needs to do more than simply not serve peanuts.

I think that it would be great if they made sure that no peanuts were consumed in the three rows on either side of an allergic child. I also think that a simple announcement does not have to create supposed legal exposure … wouldn’t this work? … “Passengers are advised that there is a child on board who is severely allergic to peanuts. We ask that passengers in rows 22-28 refrain from eating peanuts and suggest that remaining passengers avoid peanut snacks as well in the interest of safety.” Nothing invasive there. Shouldn’t create any lawsuits.

As a condition of making the announcement, I would be willing to sign a waiver discharging the airline’s liability should a peanut brought on board by a passenger cause an anaphylactic reaction. I would trade my right to sue for a safer environment any day.

This doesn’t just apply to nuts. Though nuts pose a greater risk due to their ability to roll away, if a child is allergic to milk then the people sitting in the immediate seats around the child should perhaps avoid milk to prevent an accident. This just makes sense doesn’t it?

The peanut risk is this … kids play on the floor of the plane. If you drop a peanut it could easily roll 5+ rows away. Kids also play peek-a-boo with the people in the seats behind them. Today I was terrified that the kids behind us might pass a ‘peanut snack’ through the seats to my daughter and I had visions of her eating it before I could stop her. These are not unreasonable or imaginary risks.

Today West Jet made me feel like I was being ridiculous. Ridiculous would be if the people behind us rolled a peanut under our seat, my daughter ate it and the plane had to make an emergency landing due to an anaphylactic reaction.

6 - Love

This article is a great follow-up to my last post on whether peanuts should be banned.

I contended that a peanut ban would not necessarily help all children ... in this case I was (happily) wrong.

An Iowa school district banned peanut products to ensure the safety of peanut allergic children. While the peanut debate usually generates a degree of controversy, I was surprised to read that the school board voted 6-0, with some board members noting that they "hoped the procedures struck a balance between protecting children and sparing them the embarrassment of having an unusual condition." As a tennis player that is a score I am used to ... I never though I'd see it in this context.

The best part of this ruling however has, imho, nothing to do with peanuts.

The ruling is cryptically comprehensive in that it covers off several aspects of managing anaphylaxis, despite the fact that the ban was targeting peanuts.

In particular, I really like the fact that a network of school personnel are required to discuss the health needs and symptoms of children. There is a ban on homemade food items. Young children are essentially prohibited from preparing their own food.

Even better, there is a "mandatory review of emergency procedures before field trips" and "required notification of bus drivers carrying students with such allergies."

I like this policy. If your child is allergic to something other than peanut you benefit from the group discussion, the field trip preparation and the bus driver awareness. This is an anaphylaxis policy in peanut clothing.

It's all good!

To Ban, Or Not To Ban

I came across a question at ABCPeanuts that stirred up some debate. I thought I would add my two cents. The site posed the following question:

What Is Peanut Free?
Peanut free means peanut safe. Does that mean an entire lunchroom must eliminate peanuts to be safe, or is a peanut free section sufficient? What is your opinion?

As is commonly the case with online peanut debates, posted comments ranged from practical to extreme. Here are two of my favourites:

Lilly (CA): I do not agree that we need to cater to the few that have this allergy. I do understand that it can be severe but we need to educate not ban. We live in a democratic society. All this banning of various items is becoming more of a dictatorship.

Kirsten (NY): I agree that we cannot become a dictatorship. If parents are so worried about the allergies they should home school their children and not go out in public.

I actually agree that a peanut ban does not solve the issue of overall food-related anaphylaxis but to compare a ban to the country sliding toward dictatorship is over the top.

I posted the following comment, directed in part toward these two posts but trying to discuss the overall situation:

It does not make sense to take such an extreme stance against a peanut ban. Claiming that it encroaches upon your participation in a democracy or that a child should be home-schooled due to peanut allergy is sensational and just serves to fan the flames of the debate. I will make the assumption that you would not want that for your child? That being said, I do not think that an outright peanut ban is absolutely necessary for a number of reasons … there are more reasonable solutions.

My blog (www.nopeanutsplease.com) chronicles our journey in dealing with our daughter’s peanut allergy. I take a moderate approach and one of my core concepts is that ‘It Takes A Village’ to manage severe food allergies. Peanut parents need the support of many people to ensure that their child is safe during the day and we need to support and educate those who help. While a peanut ban indeed helps my daughter avoid an anaphylactic reaction, there are several severe food allergens and banning them all is not feasible. Furthermore, a ban creates a false sense of safety and while it is helpful it does not make the school 100% peanut free.

Schools should have an emergency plan in place. They should also ensure that the contents of cafeteria food are clearly identified and that food-related activities are restricted in settings where allergic kids are involved.

Parents of other children should make sure that their children know not to share their food with other kids due to the risk of allergic reaction. It is also helpful when other parents ensure that allergic children are not left out of activities such as birthday parties just because they have an allergy. Parents of allergic children are eager to help in these situations and it is important that their kids be able to have normal social lives with other children.

Our role as ‘peanut parents’ is to make sure that the school is aware of our child’s peanut allergy and that they have a plan in place to deal with anaphylactic reactions. We also have to make sure that our daughter is fully aware of the allergy and all of the precautions that entails. We understand that sometimes we will have to make an extra effort to manage the allergy and we accept that.

It truly takes a village to manage these allergies, especially where children are involved. We all have a role.

NP.

So Long Peanuts!

Before our daughter's anaphylaxis to peanut became apparent I was a huge peanut eater. I had just cracked a brand new jar of organic peanut butter and as always had a reserve jar of Adams downstairs. My brother was the beneficiary of the peanut purge.

In addition to the (delicious) peanut butter, I also threw in that one can of Planters mixed nuts that seems to be in everybody's pantry.

I thought it ironic that the label on the mixed nuts advertises the fact that the mixture is now with "BIGGER Peanuts". Great!

I have tried almond butter and cashew butter since we had a peanut ban in the house. I found cashew butter a little too sweet but almond butter is actually quite nice. Peanut butter is of course the best ... I'll miss it but it's hardly worth the risk to have it in the house.

I am open to any and all suggestions for a peanut butter replacement! =)

Catering To The Allergic

On the heels of the Cadbury labeling recall and Peter Pan peanut butter's salmonella recall, I was understandably concerned over who was ensuring quality and safety of our food.

Then I read this article.

Seems that 17% of catered food provided to (known) peanut-allergic government officers in Northern Ireland contained peanut protein. Furthermore, over half of the samples that tested positive for peanut protein had incorrect allergy warnings. On top of this, 10% of the serving staff showed no knowledge of peanut allergy at all. I guess the silver lining is that 90% of caterers had at least a basic or passing interest.

It is tougher to manage our daughter's anaphylaxis to peanut and egg when you realize that catering (and buffets) may be a source of hidden allergens and cross contamination.

Clearly the caterers above require education as to the risks associated with food allergies and what they should be doing to help manage those risks. When 17% of the people who declared a peanut allergy are getting peanut protein in their food, that's a problem. It is reasonable for a politician who is having food prepared on a very frequent basis by a single caterer to expect an allergy-free meal when declaring the allergy well in advance.

There should perhaps be a component to the health certification for restaurants and caterers that considers their management of the most serious allergies. That doesn't mean the whole menu is without wheat, egg, peanut, tree nut, shellfish, soy, sesame seeds and wine (sulphites), it just means that the restaurant is able to offer allergy-free meals when given advance notice and time to prepare. It would also consider whether restaurant used financially-feasible precautions such as the restaurateur I referenced in a post earlier this month (his name is Chris Woodyard of Australia).

The good news is that there seems to be a changing of the guard. While I am still concerned that the mislabeled Cadbury eggs made it through safety checks, I was impressed that they went public quickly once they found out. That is progress irrespective of whether the corporate giant did this altruistically or out of fear of reprisal.

I also think that over the next few years many more restaurants will publish their menus online just like Damon's Grill. I am going to start calling into some local restaurants in an attempt to spread this idea.

The Perfect Roommate

Each day I read a variety of articles from the mainstream media on food allergy and anaphylaxis. Today I stumbled across one article that was disappointing.

In an article entitled 'What To Look For In The Perfect Roommate', the author included the following item for a roommate screening checklist, under a section called 'Habits' no less:

Habits: Living with someone who loves rock and roll at midnight might not jive with a devotee of Mozart at noon. Food choices also play a vital role when sharing space. Whether you're a vegetarian or a fan of junk food, seek someone who shares or at least respects your food preferences. Food allergies should also be discussed and ruled out, especially if severe. Peanut butter in the pantry can be fatal for some people.

So apparently food allergy is a bad habit and those with such a trait should be avoided when choosing a roommate? Wow. Forget that this may exclude excellent candidates - it is much more important to keep that jar of peanut butter on the shelf!

Anaphylaxis is not a 'habit' and it is disappointing to see food allergy trivialized in this fashion.

My 22 month old daughter has a great little spirit and I am sure she'll make somebody a wonderful roommate some day! It would be the author's loss to avoid selecting her due only to her peanut allergy.

Furthermore, there is also minimal responsibility for the author in helping to manage a roommate's severe peanut allergy. Learn how to use an EpiPen. No peanuts in the home.

It is irresponsible to advise people to discriminate against the food allergic, especially when the one is without the facts. Though there are people with multiple severe allergies, and that might prove to be a challenge, I would hope that people would select roommates based on their merit and the personality fit, not based on their food allergy.

It takes a village to manage an allergy ... and the food allergic need roommates too!

It Takes A Village - Online Menus

This is cool. A restaurant chain called Damon's Grill has put its entire menu online in a manner that lets you identify possible allergens. Though they have the standard caveats noted about risks and the fact that you need to be careful relying on the data, the interactive menu shows you the possible allergens in the food.

This would be a good tool for anybody dealing with anaphylaxis to food allergens. It would be perfect for identifying unexpected danger foods for my daughter's allergy to peanut and egg.

Here is a sample menu for my daughter and I ... hmm, I am not sure how the list auto-sorted but it might not be a bad idea to start with the sweet apple cobbler ... ahh, but wait ... my daughter can't eat the eggs! I guess that leaves more for me =)

Item	Allergens
Sweet Apple Cobbler	Egg, Milk, Soy, Tree Nuts, Wheat
House Caesar Salad	Egg, Milk, Soy, Wheat
Buffalo Chicken Pasta	Egg, Milk, Soy, Wheat
Kids Ice Cream Sundae	Milk, Soy
Kids Mac and Cheese	Egg, Milk, Soy, Wheat
Lemonade	None
Ketchup (Serving Size: 1.50 fl oz)	None