Longer Expiry Date on Milk Allergy?

It seems that this was the week of the question mark, as just about every post title this week ended with said punctuation. I posted regarding human rights in Ontario, the possible role of RGS13 protein in the suppression of anaphylaxis and the mystery of vaccine-related anaphylaxis.

In each case the news provided as many questions as it did answers. This is nothing new to those dealing with severe food allergy and anaphylaxis. There are many questions yet to be answered, and likely many questions that we have not even thought to ask.

That theme continues tonight.

I read an article about a recent study that seems to refute the old adage that 75% of children with milk allergy outgrow their allergy by the time they turn 3. In this study, only 20% of children outgrew their milk allergy by age 4 and it took until the age of 16 for 75% of children to outgrow the allergy.

Could it really be that it is now taking 13 years longer to outgrow milk allergy?

There were concerns about the integrity of the results in that the population studied was highly atopic, however the study's co-author Dr. Robert A. Wood noted that "it may also be that the character of milk allergy has changed over time".

It was already difficult to study food allergy given limited budgets and a demanding time frame. If the 'target' now begins to move that research only becomes more difficult.

A Protein That Suppresses Anaphylaxis?

In late November research was published suggesting that a protein called RGS13 may play a role in suppressing allergic reactions and anaphylaxis. The research showed that mice deficient in RGS13 had higher mast cell activity and a higher incidence of anaphylaxis.

This study has the potential to help scientists understand why some people develop severe food allergy and anaphylaxis, and could possibly lead to a treatment down the road.

"Because RGS13 is also a protein found in humans and is expressed in only a limited number of cells--including the immune system's mast cells that are central to allergic reactions--scientists believe the protein may be an attractive target for developing new drugs to treat and prevent certain allergic reactions, including anaphylaxis."

"We still do not know what triggers the allergic or anaphylactic reaction in some people," says NIAID Director Anthony S. Fauci, M.D. "These findings open up important research avenues, such as examining the role of RGS13 protein in humans to determine if its deficiency or abnormal function triggers the mast cells to release chemicals that cause allergic diseases."

Though it will be several years before this research is complete and any resulting treatment is commercialized, this is certainly encouraging news.

Measles, Mumps, Rubella ... And Anaphylaxis?

Health officials across Canada have stopped using a vaccine for measles, mumps and rubella after several patients experienced anaphylaxis. Merck Frosst Canada shipped almost 300,000 units of the vaccine, with over 200,000 of those landing in Alberta. In all, six people experienced anaphylaxis. All six were treated and have fully recovered.

Though the response was swift, the disconcerting part is that the exact allergen has not yet been identified. I am sure that the first step will be to consult the six patients who had a reaction in an effort to identify common allergens and then to identify where in the process a new allergen was introduced.

"At this point, we haven't seen any problem," Merck spokeswoman Sheila Murphy said. "We've come up empty-handed so far."

Another interesting factor is that "at least five of the six patients who fell ill in Alberta had a history of allergic reactions." Though it is unconfirmed, that implies that one of the people might have had their first incident of anaphylaxis as a result of this vaccine.

Let Them Eat Candy Canes!

Our friend Gina at AllergyMoms posted a list of allergy safe candy canes today. Our daughter will be thrilled!

Is This A Human Rights Violation? - Part 2

Yesterday I blogged about the human rights action that has been taken on behalf of six children at St. Stephen School in Ontario. Today I interviewed the key spokespeople on both sides of the issue. Maurice Brenner is the human rights expert who is supporting the children and Chris Cable is the Communications Manager for the York District Catholic School Board. (I want to first acknowledge my appreciation for their time today.)

Student safety is the priority
Both sides agree that the ultimate goal is to provide children who have anaphylaxis with a safe environment at school. Mr. Brenner noted that there is a "need to minimize risk with a safeguard" though he did acknowledge that "no safeguard will be 100% effective and since accidents will happen an emergency plan must also be in place".

Ms. Cable concurs and noted that "human rights call for accommodations for disability and though anaphylaxis is not actually listed as a disability, the onus is on schools to minimize risk" for those students with food allergy and anaphylaxis.

So why have things escalated to the human rights tribunal you ask? Good question.

Brenner's goal: Reinstate the prior process of parents checking ingredients
Mr. Brenner noted that the sole objective of the human rights action is to reinstate the prior two- step process where parents noted that lunches were safe and teachers confirmed that each lunch had a parent's note attached.

Brenner said that the former process involved "a simple note, not a detailed ingredients listing. It was just a simple note that said the lunch was checked and it was allergy free." He continued to say, "teachers are fine with the existing practice and are just following the direction of the school board. The (ingredients list) practice had been in place for five years without incident and the recent change in administration resulted in a change in attitude."

Why was the ingredient list process canceled?
According to Cable, the school board canceled the ingredients list process for two reasons. The first is to mitigate risk and the second is that she questions whether the process adds value from a safety standpoint. "(School) staff is not qualified to determine if a lunch is allergen free and neither are parents," said Cable. "You would have to be a dietitian to do this and parents would have to send in packaging so (staff) could read the ingredient list. (The process) gives a false sense security".

Where do we go from here?
Both sides are determined to see this through to the human rights tribunal. While Brenner noted that he is open to mediation, it was clear from speaking with Ms. Cable that the school board is going to stand firm in its position to go without the ingredients list process. This does appear to be headed for a formal tribunal hearing and you can bet that every school board across Canada will be paying attention.

Ms. Cable is fine with whatever ruling the tribunal makes and feels that "if York is a test case for the betterment of all schools (the school board) is okay with that. If there are specific things that the tribunal wants they should be put in place and resources will be required. This is a bigger issue than York. It impacts school boards across Ontario and beyond."

Shrove Tuesday 2007
I was struck by the Brenner's comment that the change in administration resulted in a change in attitude. This perceived change appears to be one of the biggest reasons that there is a human rights action today.

The turning point in school board / parent relations just might have been the cancellation of a 'Shrove Tuesday' celebration earlier this year. Brenner noted that in preparing for the celebration the school departed from prior practice, where a community allergy committee was consulted, and instead went ahead and ordered a new pancake batter that contained an allergen. Cable countered that the school purchased the same batter it always purchased, and a parent raised a concern that the batter "might have been made in a facility that might also have made products containing nuts".

Not only do the two sides have their own version of what exactly happened, they also differ on what transpired thereafter. Brenner noted that the school board sent a letter to parents noting that the celebration was canceled and "made it sound like the allergic kids had it canceled". Cable does not agree that the letter blamed the children with allergies.

Though it is not surprising that the two sides have different versions of events, it does appear that the biggest issue with Shrove Tuesday might have been miscommunication.

NoPeanuts' take ...
I have to admit that I am surprised at the extent to which the children, and more importantly their parents, have held steadfast on this issue. Though Mr. Brenner noted that the prior practice was easy to implement and consistent with recommended guidelines for special events, I tend to agree with Ms. Cable's contention that the process provides limited additional security for allergic children while possibly exposing the school board to significant risk.

Think about it. How diligent do you think most parents would be when they are making lunches at 10:30pm? They would do a quick surface check for peanut butter or eggs, but do you really expect them to know that hydrolyzed vegetable protein might contain peanut or that
casein might trigger an allergic response in those who have anaphylaxis to dairy?

School staff would face similar challenges when doing a quick surface check of lunches. As I noted yesterday, it is not likely that a teacher would would catch the sandwich that accidentally contained egg mayo instead of the eggless variety.

It does not make sense to have added risk without a reasonable expectation of an incremental 'reward'. While Brenner noted an increase in the number of serious allergic incidents at St. Stephen since the ingredients list process was canceled, Cable is only able to recall a single incident requiring Benadryl but not an epinephrine auto injector.

I concur with Ms. Cable's contention that the ingredients list process might actually create a "false sense of security" for parents. As I noted yesterday, I would certainly not rely on it to keep my daughter safe. I would instead take comfort from St. Stephen's comprehensive allergy policy which extends beyond the requirements of Sabrina's Law. It seems to me that the allergic children at St. Stephen are indeed being afforded accommodation for their disability.

While I fully appreciate the right of the children to refer this matter to the human rights tribunal, my original conclusion remains intact. The specific issue to be decided is whether the ingredients list process is an accommodation covered by human rights for the disability of anaphylaxis.

As this process seems to provide limited additional benefit beyond the extensive policies and safeguards already in place, I would be surprised if their action was successful.

Is This A Human Rights Violation?

A very interesting story is emerging in Toronto. Human rights expert Maurice Brenner is supporting six children, aged 6-11, in bringing a human rights complaint against their school and its school board as a result of food allergy policy.

For the past six years St. Stephen Catholic Elementary School, in Woodbridge ON, has had a program aimed at making schools safer for children with severe food allergies. To augment the provisions of Sabrina's Law, which enacted formal policy to protect school children with anaphylaxis, St. Stephen required parents to list the ingredients of school lunches and required teachers perform a quick daily inspection of lunches.

The policy was appreciated by parents of children with severe food allergy, but has been canceled due to a need to conform with other provincial schools who do not have similar policies.

Chris Cable, spokesperson for the York Catholic District School Board, said that while the "Ontario Human Rights Code requires schools to accommodate children with disabilities, 'it makes no mention of daily inspections of children's lunches by school staff, nor does Human Rights require parents to send in notes with each lunch and snack to describe the ingredients.'" Cable added that schools in the district already comply with Sabrina's law and school board staff are trained twice a year to recognize anaphylactic shock and use an EpiPen.

Sabrina's Law sets reasonable minimum standards for anaphylaxis preparedness and the York schools appear to be in compliance. Though the heightened ingredient monitoring was well-intended, it did not align with other schools in the district and would certainly not have provided 100% safety for allergic children.

As I have written many times before, even the most well intended attempts to prevent food allergen exposure will not succeed 100% of the time. A quick surface inspection of lunches by a teacher would catch an obvious offender such as a peanut butter sandwich, but it would not likely catch something that contains a more obscure allergen, for example a sandwich that mistakenly contains real mayo (Daddy used the wrong jar) but the student honestly thinks thinks it is egg-free mayo.

The bottom line is that awareness and emergency preparedness are just as important as pure prevention.

While I share the fear that St. Stephen's parents have in sending their food allergic children to school, I am not convinced that there is a human rights violation in Woodbridge.

(Note: there is a follow-up to this post.)

From Soup To Nuts

Amanda (aka Mrs NoPeanuts) was in Toronto this past week. She had lunch in a church basement and the cooks had made a lovely Moroccan soup. She was surprised to find out that the soup had peanut butter in it! She was even more surprised that the staff demonstrated strong food allergy awareness by noting the inclusion of peanut butter directly on the soup placard. Very cool.
I was intrigued by the inclusion of peanuts in soup. I had no idea that it was so common.

I did a search at Epicurious.com and found 19 soup recipes that contained peanut. Most of them had peanut in the name so you'd clearly notice but several others, Szechwan Carrot Soup (1.5 tbsp peanut butter) and Long Leaf Noodle Soup with Hoisin Marinated Shrimp Soup (1/2 cup peanuts), are more obscure from a peanut perspective. Many other soups, including Chinese Hot And Sour Soup, contain peanut oil.

Obviously if we were making these soups we'd modify the recipe to leave out the peanut. That being said, if we were at a restaurant and saw carrot soup we would not have immediately thought 'watch out for peanuts'.

Of course we always ask about peanuts when ordering but I did not realize that so many soup recipes used peanut and I might have trusted the judgment of a seemingly astute waiter who told me their carrot soup was safe. I will ask a couple of follow-up questions in the future.

I am sure that people out there are saying, "I knew that soups often include peanut!" I guess this just highlights that allergy management is a perpetual learning process.

Thanks to the church staff in Toronto. Your simple sign noting that there was peanut butter in your soup has been more helpful than you know!

Over The Hills And Jar Away

This week I was at a software event in Los Angeles. In typical fashion there were cookies and other sweets laid out to fuel the event's patrons, many of who would spend hours on their feet presenting their products to customers.

Though people with peanut allergy would always be wary of cookies of unknown origin , I was somewhat surprised to note that the chocolate chunk cookies were set out in large glass jars filled with peanuts. Peanuts filled about half of the ~10L jars and the cookies were then stacked on top.

Though it is unlikely that a peanut allergic person would eat those cookies anyway, there is a chance that somebody could ask about the cookie, be told that no peanut was in them and then eat a cookie cross-contaminated by the peanuts that they were stacked on.

I know that seems like a bit of a stretch, but I am never comfortable around 5L jars of peanuts!

NoPeanuts In The Globe

Today we were quoted in the Globe & Mail, Canada's national newspaper. Globe reporter Tralee Pearce was intrigued by the rapid growth in the incidence of food allergy and we were interviewed as part of her research.

In reading the article I was interested to learn that "the median age of first peanut-allergy reactions has dropped to 14 months from 21 months over the past decade." Over the same period of time "the median age at which the allergic child was first exposed to peanuts has dropped to 12 months from 19 months."

As we all know, there is no definitive explanation as to why the incidence of peanut allergy is increasing. Pearce also pointed out that the drop in the age of the first reaction might be due to the fact that parents are now more acutely aware of the signs of a possible allergy.

In the course of our discussion I intimated that the most frightening aspect is the suddenness with which a reaction can appear. "It's all or nothing," Mr. Smith says. "She's either totally fine or it's an emergency."

Thank you Tralee for taking an interest in food allergy.

Fear, Frustration and Hope

Today I came across a great article on CNN. The article is written by the mother of a young boy named Teddy who has anaphylaxis, to peanut, egg, dairy and wheat. Unless you have a experience managing severe food allergy, you would not appreciate how difficult it would be to manage the allergy and keep Teddy safe. Teddy's exclusion list would dwarf Madeleine's, which is just egg and peanut.

I was struck at how well Teddy's mother articulated the fears, concerns and frustrations that parents face when they have a child with severe food allergy.

In the midst of managing a tough dietary regimen, Teddy's mother also faces the ignorance and fears of others. It is important to understand that most people just do not understand food allergy. They cannot comprehend that the perfectly healthy child in front of them goes into a life threatening reaction within seconds upon contacting the allergen.

An example of this is when people say to Teddy's mother "Oh, a little bite of cake won't hurt him" and "Why do you need to read the label -- I'm sure this is OK." If you have a child with food allergy you have almost certainly encountered this. It is frustrating, but your role as a parent protecting a food allergic child is to treat that as an opportunity to educate vs a reason to become frustrated.

Another classic example from Teddy's mother involved air travel. "When we fly, we have to fill out paperwork for a peanut-free flight, since even airborne peanut particles can pose a risk. Once a flight attendant slipped up on a connecting flight and began passing out peanuts. I asked her to please keep them away from our rows. "Oh? Is the peanut allergy still on board?" she asked." Though it is frustrating to have your child reduced to a label or stigma, this is another opportunity to spread awareness. It might he helpful to talk calmly to the flight attendant after the flight about her choice of language. Getting angry during the flight would just make you look like a 'peanut parent' who is totally overreacting.

School of course is a fear for all of us and Teddy's mother shares our concern that Teddy will "most likely have a segregated seat at lunch, and while that potential exclusion saddens (his mother), the growing number of children with allergies would seem to indicate he'll have some company in the lunchroom."

I chose to highlight this article as it covers many of the major concerns and fears encountered by parents if children with severe food allergy. We face these psychological challenges in addition to managing complex 'dietary logistics'.

Another element of the psychology of childhood food allergy is hope.

Teddy's mother says, "we still have hopes that Teddy will outgrow some of his allergies. After all, he's only 3½. If he can outgrow only one allergy, I hope it is cow's milk. He'd be able to eat the lengthy list of foods whose only allergen is caramel coloring. And I'd like to be able to drink a glass of milk and kiss him on the cheek without him getting a hive."

I've had this sample mental conversation myself many times.

Though we all have become adept at managing severe food allergy, the truth is that everyday we hope that it will somehow vanish in the same mysterious way that it appeared.