'Overstated' Is An Overstatement

I've read one to many articles this week touting that "Peanut Allergies Are Overstated". I posted about this already this week but I think another post is in order. In my Wheal Deal post I blogged about the fact that the Australian research does not appear to be novel in its findings, though it does reaffirm findings of prior studies which is useful.

Upon seeing this article over and over in the press, I have developed more of a concern with the press coverage than the actually study. My concern with the press coverage is on three levels.

1) The articles should be more explicit in explaining to parents that 70% of these kids ARE allergic to peanuts and that an oral challenge is a very serious matter. It needs to be done in a hospital. The risk is that skeptical parents do their own oral challenge at home.

2) Since 80% of kids outgrow a peanut allergy, it is possible that in the interval between the skin prick test and the peanut challenge the allergy may have resolved itself. I will follow up to ascertain the average duration for this interval.

3) This might be a stretch, but if a child has never eaten peanut would a skin prick test serve as the introduction of the antigen? ... or would it take oral consumption? If it is the latter then would it not be possible for the oral challenge to introduce the peanut allergy and actually sensitive the child to peanut? Again, I suspect this is a stretch but I am just trying to think it through logically.

I also took exception to Dr. Wainstein's comment that safe daily peanut consumption rendered allergy testing irrelevant. The statement may be true but the term 'irrelevant' just serves to make the article a touch more sensational. It contributes nothing of substance.

I have been very disappointed in the way this story has been communicated to the public. It is just the type of story that the Peanut Doubters want to see and it risks giving false hope to parents of allergic kids.

Kids' Allergy Video

This is a great video that shows kids talking about their food allergies. It is powerful to watch these kids. Our daughter is just starting to grasp the concept of an allergy and it gives me hope to see kids just a couple of years older talking about managing their allergies.

Our daughter recently turned two and though she says 'No Peanuts Please!' and that peanuts, eggs and doggies 'make me sick' she is not yet able to fully grasp her allergy.

It did bother me to hear over and over how these kids wish they didn't have the allergy. We wish they didn't have these allergies either!

Allergy Donors NOT Wanted

NoPeanutsPlease was recently quoted on another blog and it generated over 100 visits in just three days. I was impressed. The blog's author, Moreena, has a challenging parenting situation in that her six year old daughter has had multiple liver transplants and often has a suppressed immune system, which presents a significant risk for infection. Frankly, managing a severe peanut allergy seems to be somewhat less of a challenge, though being thorough and prepared is likely a consistent theme for both groups of parents.

In an off-blog exchange with Moreena, she noted that she became familiar with allergy discussion boards due to the number of transplant recipients that also inherit a food allergy from their donor. This reminded me of an article last week about a Scottish woman who picked up a severe peanut allergy via blood transfusion.

It never occurred to me that this would be a risk but it does make total sense given that the IgE antibody is found in blood serum. It seems that the antibody is able to make itself right at home in new surroundings! Here is an excerpt from the article:

"It is believed to be the first time a severe food allergy has passed from one person to another through donated blood. The 80-year-old patient was given blood ahead of minor surgery ... Two days later she ate a muffin with peanut butter and became ill within minutes with anaphylactic shock. Her throat closed, she was struggling for breath and she had difficulty swallowing. Doctors immediately injected her with adrenaline and steroids to halt the potentially fatal reaction.

"... When they checked the records, they found the blood had come from a 19-year-old female patient with a history of severe allergic reactions to nuts ... The National Blood Service said it does not test donated blood for allergies. Allergy sufferers are allowed to give blood as long as they are not suffering any symptoms on the day."

I find it incredible that this has not been recorded before, especially given that the Prausnitz-Küstner reaction was documented 85 years ago! I wonder how many adults who 'developed allergies later in life' actually received them via a blood transfusion or organ transplant? I suspect not all of them but it does beg the question.

Seems that screening would be a good idea. An amazing future scenario might see an organ recipient being forced to choose between waiting for a matching organ that is allergy free, but might never arrive, or accepting an available organ from a donor who has severe anaphylaxis to five or more major allergens. I suspect in just about every case the patient would still take the organ, but it does present an interesting medical quandary.

Sometimes I am struck by how little we know about severe food allergies. Our lack of information is simply unfathomable. Though I am not enamoured with the circumstances of my involvement in this issue, I have to admit that I find anaphylaxis to be absolutely fascinating.

The Wheal Deal

Today researchers from Australia announced their discovery that up to a third of children who tested positive to peanut allergy on a skin prick test did not react to an oral challenge. This is somewhat encouraging to parents with children that have been diagnosed as peanut allergic via skin prick test but who have not had a known allergic reaction. There is a chance that their child is not actually allergic ... wouldn't that be great!

I would not recommend that skeptical parents do their own oral challenge as the reaction could be fatal! In this study, the oral challenges were done carefully and in the presence of trained medical professionals. When the challenge data was compared to the skin prick data the researchers noticed that the children who had a positive skin prick test and a negative challenge all had wheal diameters below 13MM.

This is not a new discovery. As seen on Dr. John Weisnagel's site, studies have indicated this correlation before, for example a June 2002 study noted that "the performance characteristics of the skin tests were superior using raw extracts because the negative predictive value was 100% (if the wheal diameter was less than 3mm, they could be quite certain the child was not allergic). On the other hand, if the wheal diameter was larger than 3mm, the predictive value was only 74%. If the skin test wheal was 16mm or larger in diameter, the predictive value was 100% that the child was allergic.

There is indeed a strong correlation between a positive skin prick diagnosis and the results of the oral challenge, albeit less than 100%. In the majority of cases, a positive skin prick test does correctly indicate that the child has an allergy. Parents should consult an allergist before making a decision to confirm or refute the skin prick diagnosis with an oral challenge. It's best to err on the side of assuming that your child does have the allergy unless proven otherwise.

Happy Mother's Day!

Happy Mother's Day to all the moms out there who frequent NoPeanutsPlease.

Not even Mother's Day went by without an allergy incident in this house. I made dinner tonight. I had a beautiful Chianti that I wanted to pair with a nice pasta dish. By now we are programmed to research before feeding anything to our daughter, especially when nuts or legumes are involved.

I love pesto. I was thinking that a pesto pasta would be nice and though we believe that our daughter is okay with pine nut I double-checked online to make sure that there was no specific issue. This is what I found:

"Peanuts are sometimes used as a substitute for pine nuts in food products such as pesto, so people who are allergic to peanuts should be very careful about eating foods traditionally made with pine nuts."

Oops. I opted for a creamy herb sauce with chicken and roasted peppers.

Shell Game

Another weekend, another allergy scare. We've been on a roll lately it seems.

I play in a touch football league here in Vancouver and my wife takes the kids to games whenever the field has nearby playground equipment. During the first half of this week's game our daughter was playing near the swings when she came over to my wife with something in her hand.

My wife casually looked down to see her holding, of all things ... a PEANUT SHELL!

Turns out that (I'm guessing) some kids might have been in the park the night before, eating peanuts while sitting in the swings. They left the shells on the ground. I try not to judge people's actions. I was a peanut eater before December and you just don't think twice about that pile of shells you leave at the football game, hockey game, etc. It is simply a lack of awareness.

This time around we were lucky. There was no reaction at all this but we did give her Benadryl and play the fearful waiting game. For the rest of the morning even the slightest little facial blemish looked like a 1cm wheal!

It's virtually certain that you'll see somebody eating a bag of in-shell peanuts someday soon. Consistent with cultural practice, they'll likely be throwing the shells on the ground. Please ask them politely to throw the shells into the trash. They'll likely be unaware of the potential danger to an allergic child.

It Takes A Village.

Thai-ing To Remember

My wife and I have already agreed that our the next time we are away without the kids we are having Peanut Butter toast and a huge omelet. For at least ten years I ate peanut butter for breakfast every morning. Many of those mornings I also had eggs. I am struggling a little with my fruit smoothies and oatmeal, though both are certainly great. I still haven't found Sun Butter but apparently that might be a solution.

The irony is that the peanut butter was easy to cut out of the house since it was right in front of me every day. It has been harder to break old habits such as eating Thai food. We used to order Thai at least twice month but of course that stopped once we discovered our daughter's allergy.

Thai cuisine might be the earth's single biggest supporter of peanut on a per-staple-dish basis. They put peanuts in everything.

I have blogged before about how it is not reasonable to expect a Thai restaurant to be peanut free, and I have seen why first hand. I am currently on a training course and last night our team had work to do in the evening. Once tummies started to rumble we ordered out. It was natural instinct to suggest Thai ... it's easy, many people like it, etc. As I began to order I remembered why I had not eaten Thai since December 2006.

As I placed my order I remembered that the Chicken Skewers had peanut sauce and the Pad Thai contained peanuts. The team seemed intent on Thai and my daughter was not around so I figured I'd just go ahead and order and make sure I did not have any peanut. I requested that the peanut sauce be left out and did not order the Pad Thai with peanuts.

So naturally when the order arrived I had double peanut sauce and for some strange reason they included a cup of crushed peanuts for me to use as a topping. Clearly something was lost in translation. I threw out the peanut toppings and tried to remember to wash my hands and face when I arrived home later that night.

When I walked through the door my daughter stirred and I went in to give her a kiss. Oops! I did not wash my face before doing so. Even though I did not knowingly eat peanuts, my default to the worst case scenario left me very worried about cross contamination. I went into her room every five minutes for an hour to make sure I did not bring home a peanut treat.

Everything was fine but for an hour I sat in my chair waiting for the worst to transpire.

Pathfinder Leads The Way

This is just the story I needed to read tonight. After our daughter's anaphylactic reaction this week and today's unfortunate incident I needed a feel-good story. I needed to read something that would remind me of the many, many people out there who are focused on helping our daughter. I found solace in the story of David Dockendorf, principal of Pathfinder K-8 school in Seattle.

Typically when parents of allergic children push for better anaphylactic policy or (God forbid!) a peanut ban, they are met with resistance. Not the case at Pathfinder! Machel Spence has a second grade daughter in the school and when she raised concerns about the schools level of preparedness for an anaphylactic emergency, this is the response she received:

"The principal, David Dockendorf, was very quick to respond and after their meeting was completed with the nurse and staff he sat down with me and shared his list of steps the school was going to take to make my daughter's school environment a safer one. The school nurse, Terri Helm-Remund, was also very responsive to my concerns and within days there were signs all over the school, a separate nut-free table in the lunch room for my daughter and her friends who bring nut free lunches and an article sent home to all Pathfinder parents to read asking them to avoid peanut products for snacks in the classroom as well as bake sales."

This is great. Though I do not see mention of the school purchasing EpiPens, providing teachers with emergency response training or educating students that there are several allergens that can create a fatal allergic reaction, I will take comfort in the fact that Dockendorf was so responsive and caring in his approach.

It Takes A Village and clearly Pathfinder is showing the way!

Peanut Butter Family

Today my parents tagged along for our daughter's weekly gymnastics class. The instructors have been great with the allergy and we've not had any serious issues to date.

This morning a new set of classes began and, per standard practice, we made sure that the other children, parents and nannies knew of our daughter's allergy. The instructors made an announcement and as always, the class was without incident.

After class our daughter made her way out to the foyer to get her coat and the Peanut Butter Family decided it was snack time. Parents, kids and Grandma all had peanut butter sandwiches and when Grandma caught our nanny's eye she sort of smiled in a way that suggested, 'what's the big deal'?

I understand that others cannot be expected to think proactively about our daughter's allergy. It is our responsibility. That being said, upon seeing our daughter they should have shown us the courtesy of putting the sandwiches away given that they had just heard about her allergy. This type of passive aggressive behaviour in response to our daughter's allergy bothers me.

Fittingly, as the family left one of the kids polished off his sandwich and innocently slid his hand along the rail as he ran down the stairs. One of the toughest things about the allergy is its ability to replace the joy of watching a child happily playing with the invisible terror of microscopic peanut proteins that might not even be present.

It's amazing how different the world looks when you're managing an allergy.

Dear Grandma, "It takes a village".

Bill M210 Update

As you recall, Bill M210 is making its way through the legislative process here in British Columbia. I recently posted about the bill and also how you could help. Titled the 'Anaphylactic Student Protection Act 2007', the proposed law would make schools a safer place for allergic children.

On May 7 Sara Shannon will be in attendance at the BC Legislature. David Cubberly, who has put forth Bill M210 will introduce Sara and tell the story of her daughter Sabrina, who left us several years ago as a result of an anaphylactic reaction in her school.

We are all hoping that Bill M210 does make it to its second reading on May 28. For that to happen we need the support of the Liberals who have a majority government. Through my network I have personally contacted 10 Liberal MLAs including 4 ministers.

Here is the text of the letter I sent:

Dear _________,

I am writing to you in an effort to build support for the "Anaphylactic Student Protection Act, 2007" as tabled by MLS David Cubberly in March 2007.

This past December our 21 month old daughter had an anaphylactic reaction to peanut. It was terrifying. She did not actually even eat a peanut - she ate a gingerbread cookie that came in contact with a peanut butter cookie from a friend's Christmas baking exchange. Within 60 seconds she was covered in hives and losing her ability to breathe. Without the quick response of the paramedics we may have lost our little girl.

Just this past weekend our daughter was rushed to the hospital again. Without my wife's quick response, including the administration of an EpiPen epinephrine auto-injector, there is no way to know how far this allergy would have progressed.

It has been said that one of the hardest things about anaphylaxis is convincing non-allergic people in our daughter's life that this is real. As we have all seen with the tragic death of Carley Kohnen in British Columbia recently, these allergies are very real and very dangerous.

In an effort to mitigate risk, we have educated ourselves on the allergy and rid our home of peanut products. That being said, there are others in the community that we will come to rely on heavily for our daughter's safety, especially the staff in our schools. In many cases emergency response is required in a matter of minutes and without without clear emergency preparedness policy and procedures out daughter is at risk of a fatal reaction.

In his first reading of the Anaphylactic Student Protection Act, 2007, MLA David Cubberly mentioned the case of Sabrina Shannon who died at school after an anaphylactic reaction. There are many other cases just like hers. These children face considerable risk in a school environment but through awareness, policies and emergency response preparedness this risk can be significantly reduced.

People often say that this only affects 2% of the population but that is simply not true. These children have parents, friends and relatives that would be devastated should they have a fatal reaction. I would like you to consider this math ... if the the death of an anaphylactic child directly affected even 20 friends and family members in the community, then it is reasonable to estimate that over 40% of your constituents are directly and positively impacted by this legislation. Anaphylaxis is not just the concern of a small, vocal minority. It is becoming pervasive in our community and this will only increase given that the incidence of food allergy growing at an alarming rate.

I ask that you to support the "Anaphylactic Student Protection Act, 2007". It is sensible, pragmatic policy that will save the lives of children. There is also considerable support for the implementation of this policy. Organizations such as Anaphylaxis Canada have deep experience in supporting schools with education and safety programs. They would be eager to help. Teachers, principals and staff will not be left alone.

It takes a village to support children with anaphylaxis - you would do these kids a kind service by voting in favour of this bill.

Thank you in advance for your support ... and for your vote!