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.

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!

We're Eggstatic!

I blogged earlier this week about our recent Eggsellent News and that we were expecting an upcoming egg challenge for our daughter. Well today was the big day. This morning I made French toast for Madeleine for the first time. We put the French toast in a container and headed to see the allergist.

The thought of sitting with a three year old for over three hours while she ate French toast in tiny increments was something less than optimal, but given the circumstances I was excited.

Our allergist started her with one small bite of French toast. We waited fifteen minutes with bated breath ... no hives, no redness ... we were in the clear! Or so we thought ... the second bite was double the first. After 5 minutes my heart sank. There on Madeleine's cheek was a single, large wheal. I was very disappointed.

I was afraid that the challenge would be stopped at that point, but after fifteen minutes where no additional hives appeared our allergist decided to keep the challenge going.

The portion of French toast was doubled again ... up to a quarter slice. We were ecstatic to see the first hive disappear and no additional hives surfaced, save one small dot on her hand.

Things had really turned and it was now safe to be very optimistic!

After waiting another hour after Madeleine ate one more half slice of French toast, we were given the all clear and in her honour Saturdays will officially be "French Toast Day" in our home!

The next steps are to ensure that she eats egg at least three times a week and to monitor any reactions. The addition of egg to her regular breakfast routine will help her develop tolerance.

This is huge news. Though I knew I would be happy, I have to admit that I was surprised by the wave of relief I felt once we were fairly certain that her anaphylaxis to egg had finally dissipated. I think that after two years you just learn to live with the allergy. In some strange sort of way I actually miss it a little because it was part of the fabric of who our daughter was. That being said, we will happily kiss the egg allergy goodbye!

Let's hope to have a similar result in two years when we revisit the peanut allergy.

Eggsellent News

It seems that our daughter's egg allergy is gone. We made a switch to a new allergist in November and not only do we prefer our pediatric allergist, we have good news to report on the egg front.

First of all, find a pediatric allergist!
Back in November we took our daughter in to see a new allergist. We did not hit it off with our first allergist and I left the office very concerned about the level of care our daughter received. I discussed my concerns with a pediatrician that I know, and he confirmed that given the rapid rate of change in allergy research a pediatric allergist was the way to go. He also knew an allergist in our area that was very current with respect to her knowledge and helped us get an appointment.

In our first visit with our new allergist we did a new skin prick test (SPT). The first allergist did a SPT when Madeleine's arm was covered in so much eczema that there was barely enough room on her arm to do the testing. Many people (including us) have questioned whether we should not have been sent home to return another day.

Our first allergist also did not break the skin when he did the skin prick test (SPT) for peanut. Apparently current research indicates that the chances of a SPT triggering anaphylaxis are sufficiently low to allow the skin to be broken, especially since the test is administered in the care of an allergist.

Our new allergist is great with our daughter and very current in her research (at least from our vantage point). I am very glad that we made the switch.

Eggsellent News!
Of course it helps that in our first visit with our pediatric allergist that Madeleine did not react to egg in her skin prick test, though dogs and peanuts are still a concern. The negative SPT for egg was followed up with a blood test that confirmed that the egg allergy does appear to be gone. Let's hope that's true!

On Monday we have our egg challenge ... stay tuned for the results!

Mixed results on peanut
Though we were excited about the results on the egg front, it was interesting to learn the results of the peanut allergy. Though the SPT produced a 14mm wheal, which is very large, it has been shown (1) that an 8mm wheal is a reliable indicator of a peanut allergy incidence, but has a weaker correlation with the allergy's severity. "The positive predictive accuracy of the (SPT) is only in the range of 50-60%, meaning that a positive reaction will only predict a positive food challenge in 50-60% of patients." (2)

"No Peanuts, Please"
So it appears that we are in the clear on egg and given the mixed results for peanut, we may have good news there in a couple of years. In the interim, it's "No Peanuts, Please" for Madeleine.


References
1 - Hill DJ, Heine RG, Hosking CS, Pediatr Allergy Immunol, Oct 2004
2 - A. Ives, J. O'B. Hourihane, Current Paediatrics, Oct 2002

Peanut Free Baseball

In June I posted about how sports teams were beginning to take peanut allergy more seriously. I came across this article tonight which gives a first hand perspective of a father and son who attended a Washington Nationals game on a night where a peanut-free skybox was offered for allergic kids. Note that the young boy in question developed hives despite all of the cleaning and precautions. I suspect that peanuts are just 'in the walls' of a ballpark, just like eggs seem to be 'in the grill' at diners.

Villager of the Month - Jen

The Villager of the Month accolade goes to a person or group that has done something interesting or special for those with allergies.

This month's winner is our neighbour, Jen. Our daughter was invited to her son's first birthday. A few weeks before the party Jen proactively reached out to ask for our Wacky Cake recipe. She then went a step further and told all of the other parents that there would be an allergic child at the birthday party and to avoid bringing peanut snacks.

How incredibly thoughtful!

Jen made four chocolate Wacky Cakes and as always, they were moist and flavourful. These cakes are hardly a sacrifice for anybody and are very helpful for those with severe food allergies. The cake was a hit with our daughter. I think she ate five pieces, though much of the cake seemed to be smeared on her face and her dress!

Just as the party was winding down, an incredible thing happened.

I was speaking with one of Jen's friends and I mentioned that the cake was nut and egg free. It turns out that she has anaphylaxis to peanut! She was very happy to learn that she could actually enjoy the cake with the rest of us.

This was a rare treat for Jen's friend and it was also a pleasant surprise for Jen as she was not aware of her friend's allergy. Consider it allergy karma! You just never know who is going to have an allergy in your circle of friends.

Other parents could really learn from Jen. She simply asked for a cake recipe, advised other parents to bring peanut-free snacks and ensured that whatever else she served was peanut free. She did not fear the allergy. She did not make us feel like she had to go out of her way. As a result we never felt like we were an inconvenience.

Though I did have to be careful of a few egg items on the buffet style party spread, our daughter was really just there to play with the other kids and to eat chocolate cake!

It Takes a Village to manage an allergy! Jen set a great example for parents looking to accommodate children with food allergies.

Do Eggs Make YOU Sick?

I thought I would share an interesting conversation that our 2 1/2 year old daughter had with her 2 year old friend. They were playing with our daughters' kitchen set. We have about 100 plastic food items and as they played our daughter picked up a plastic fried egg. The first time she saw the egg she asked us what it was. I was struck by that because we used to eat eggs every day but once we learned of her allergy we began to phase eggs out. She had never seen an egg!

As they played, our daughter turned to her friend and said ... 'eggs make me sick. Do eggs make you sick'? Her little friend had no idea what she was talking about.

I found this interesting because the day before I had explained to our daughter that not everybody gets 'sick' when they eat peanuts or eggs. I told her that though she can drink milk, other kids get sick when they drink milk. The point was that not everybody was allergic to peanuts, but there were things that were safe for her that others could not enjoy.

The concept of food allergy is very confusing for a two year old. Our daughter is starting to understand and it is fascinating to observe her as she scrambles up the food allergy learning curve.

Please Don't Pass The Mayo

Tonight we had an incident that reinforced our decision to remove all raw egg products from our home. We ate dinner on the deck tonight. My wife ran back into the kitchen but for an instant and in the time she was gone, our daughter grabbed her hamburger and took a big bite. In the past we always had mayo on our burgers. Given our daughter's egg allergy this would likely have been a bad situation.

But alas we are now using an eggless mayo so disaster was averted. There was no way I could have gotten to the burger before my daughter. Naturally my immediate thought was a mental image of the allergic reaction that might have ensued should the mayo have been of the egg variety.

Our decision to remove eggs from the home came after I ate an omelet. It was about a month ago. Up to that point we kept eggs but removed peanuts. The thinking was that we could be careful with eggs but despite all my precautions during the cooking process, I gave my daughter a kiss after eating the omelet and she had a large welt on her cheek. That was the final straw.

Ironically a week or so after we removed eggs from the house my parents were here. My Dad found four eggs in the back of the fridge and fried them up. My wife caught him just as he was bringing the eggs downstairs to my Mom, who incidentally was playing with our egg-allergic daughter. Understandably my Dad did not think about the allergy and it was only after my wife caught him at the top of the stairs with a plate of eggs that he remembered. I did not even realize we still had eggs in the back of the fridge.

Though (like me) you'll probably miss many of your favourite food items, I urge you to rid your home of any products that contain allergens harmful to your family members. Accidents happen and it is just not worth the risk.

Dare To Dream!

I cannot even imagine how relieved I would feel if our daughter grew out of her allergies. I just read an article about a four year old, peanut allergic girl who successfully completed a peanut challenge. She ate 39 peanuts! After living with a severe food allergy for three years I suspect that it would take an adjustment for her family to get back to 'normal'.

I am resigning myself to the reality that this is an unlikely scenario for us, (ie: <20% chance) , but it sure would be nice ... dare to dream.

Restaurant Review: Avenue Grill

NoPeanutsPlease Restaurant Reviews will assess a restaurant's level of allergy awareness based on three categories: Menu, Server Reaction, Attention To Detail. I will then provide an overall rating of Peanut (allergy risk) or NoPeanuts (allergy friendly). Where possible I will foward the URL of the post to the reviewee to give them the chance to reply.

For those with food allergies every restaurant poses a risk. The point of this series is to outline where restaurants can improve and highlight restaurateurs who are astute when it comes to serving food allergic patrons. Even if you do not live in Vancouver these reviews should be helpful in terms of showing you what we look for.

Reviewee
The Avenue Grill on 41st Avenue in Vancouver, BC.

Menu
The Avenue Grill has a fairly broad lunch menu but it stays true to its bistro-meets-diner ambiance by offering up a page of egg dishes and a variety of burgers and sandwiches that all seem to include mayo. For those with egg allergies this menu is an issue. Though you could order your sandwich without mayo, the large volume of eggs going through the kitchen heightens the risk of cross-contamination. We ended up choosing a fruit salad and cottage cheese for our daughter.

Server
In my opinion, when it comes to managing an allergy the most important person in the restaurant is the server. The cook plays a central role but the server is the one who walks a food allergic patron through the menu and makes the cook aware of the allergy. I prefer to see a server who is receptive, attentive and sincere while helping us select safe food items. In this case, when we told our server that our daughter had a severe peanut and egg allergy we were met with a blank stare. I suspect she was either indifferent or slightly overwhelmed. It is critical to watch for this first reaction as a parent.

Attention To Detail
We made it fairly easy for our server by ordering a fruit salad for our daughter. We did forget to ask for no mayo on my wife's sandwich and my burger. Though we should have caught this ourselves, it would have been impressive if she noticed that mayo would pose a risk to our egg allergic dining mate.

Peanut vs NoPeanuts?
Unfortunately my inaugural review presents a great example of why I decided to add this feature to the blog. The Avenue Grill would be a suitable place to eat for many but for the food allergic, (and especially those with egg allergy), it should probably be avoided. The lunch menu offers up only soup and salad as items that are egg free and though you could ask them to hold the mayo on sandwiches, with so many eggs going across the grill the risk of cross-contamination is high. In addition, our observations did nothing to convince us that the restaurant takes care to clean surfaces fully and avoid cross-contamination in the kitchen. Though our daughter did not come into direct contact with eggs, by the time we left she had well over two dozen hives on her arms and face. This was not a good experience.

Overall Rating: Peanut

General Comments:
Though this feature is focused on the allergy awareness of a restaurant, I figure that readers would also like to know what our overall impressions were. An institution for decades, the Avenue Grill was high on the list of neighbourhood restaurants that I wanted to try. Unfortunately the inattentive service and fairly bland meal did nothing to make me want to return. There are better options for lunch in Kerrisdale, egg allergy aside.

After Today, No Eggs Please

Easter might possibly be the official day of our daughter's allergy. The original Easter egg hunts were done with painted chicken eggs. She is allergic to raw egg and I am not sure that boiling them changes the chemistry sufficiently to avoid a reaction. Of course the modern twist on tradition is to use chocolate eggs. In theory that would be okay but only a minority of chocolate is manufactured in peanut-free facilities and even then we have the Cadbury mini-egg recall. The combination of these allergies makes an Easter Egg hunt a challenge.

This week I began to teach our daughter to say 'No Eggs Please' whenever she sees an egg. I am also teaching her to say 'No Peanuts Please' whenever somebody offers her food of any kind. She is getting the hang of it and we hope it will be one more defense against anaphylaxis.

Today the learning was interrupted. On the heels of learning to say 'No Eggs Please' whenever she sees an egg, today she awoke to coloured plastic eggs being hidden around the house for her first Easter Egg hunt. I know that is probably confusing to her but it had to be done. The annual Easter Egg hunt was one of the highlights each year in our family and it is a tradition I want to pass on.

Our daugher is into games, so the hunt was a huge hit. The fact that the eggs are not edible is irrelevant - I'm sure she had just as much fun as she would have if the eggs were chocolate. Of course, the irony is that the gummy candies we put inside were peanut free, but they have carnauba wax which can occasionally cause issues with eczema. Next year we'll hide plastic eggs that have toys inside - the whole 'food thing' is just too challenging sometimes!

We had great fun this morning ... our daughter was running around saying ... 'Hey Bunny! Where'd you put the eggs, Bunny?'.

Tomorrow we'll revert back to 'No Eggs Please'.

Pat-A-Cake, Pat-A-Cake

As a peanut parent I have to deal with severe peanut and egg allergy in the household, as well as anaphylaxis. As a fairly creative person I also have to deal with random thoughts. When the two team up it makes for some weird combinations. Tonight I was playing Pat-A-Cake with my daughter and had the weird thought that she might actually be allergic to Pat-A-Cakes. Turns out that I was right ... there are eggs in the recipe. I guess we have to play the egg free version of the game!

Eggless Pancakes

This morning I figured I would get up and make pancakes. Regulars at NoPeanuts know that our daughter is anaphylactic to peanut and also to egg white.

So I began the search for the eggless pancake recipe. What I quickly noticed is that eggless pancake recipes are basically the same as regular recipes ... you just leave out the egg. Surprising huh? I made my favourite wholewheat buttermilk pancakes and ... you guessed it ... just left out the egg. They came out just fine. Too funny.

Is Allergy Blogging Bad?

I received a very interesting and thought-provoking email from a medical doctor today. It sparked some excellent conversation in the NoPeanuts household.

(Note: the original text has been modified as I included portions of the email from the doctor that he subsequently felt I should not have posted. I have removed the doctor's name and portions of the text at his request.)

I had emailed the 'Doctor' to discuss the increasing prevalence of peanut allergy. He responded by questioning whether I should be blogging at all and I wanted to use his point of view to open a discussion on this site.

Doctor:
Peanut allergy is the same as seafood allergy or milk allergy or an allergy to any food. ... Why put your daughter in a separate category, different from other children? I personally think it's bad, especially for your daughter. Nobody is doing it for other food allergies!

NoPeanuts:
This blog focuses on the journey that begins when any parent is blindsided by the discovery of an anaphylactic food allergy. I chose peanuts because that appears to have been the catalyst that brought us into the food allergy community. Before this happened, I was admittedly unaware and somewhat unconcerned. We may find out at the end of the month that our daughter is not even allergic to peanuts, but that would not lead to a name change of this site.

The underlying allergen, in this case peanuts, is actually irrelevant. 'NoPeanuts' is a symbol for any allergy that requires ongoing care and management. In the interest of full disclosure our daughter also appears to be anaphylactic to egg whites and has a strong contact allergy to dog saliva.

I contend that this is not bad for us or for our daughter. I am writing in the context of 'our reality' and that appears to first and foremost be peanut. I am not sure it is a fair characterization that by focusing on 'our reality' and 'our story' that I would be doing a disservice to other parents by not discussing all food allergies.

That being said, I will try to be as balanced as possible in my discussion of food allergies in general while staying true to the mission of chronicling our journey.

Doctor:
There are already good help organisations dealing with food allergies ... : Anaphylaxis Canada, the Canadian Allergy and Asthma Information, the Calgary Allergy Network, The Food allergy and anaphylaxis Network ... to name just a few. Your blog is not going to accomplish anymore than what's already there.

NoPeanuts:
I understand your point here but I have no illusions of grandeur that would lead me to think that I can replace or usurp these organizations. A blog is just the new 'community chat group'. Instead of engaging in the Peanut Allergy Cloud I could choose to sit in the basement of a parish hall and discuss our child's allergy with other parents. But don't you see that this is actually a higher risk proposition? I would have a smaller sample to draw from and would thus be at a greater risk of getting bad advice.

I urge you to think of the "Wisdom of Crowds" principle - global is, frankly, better. I am simply choosing to engage in an online global discussion group where I am somewhat of a moderator. I also intend to volunteer with one of the organizations above and I am in the process of researching that. I would urge people that do find this blog useful to post comments (and conversely those that agree with the Doctor should post as well).

Doctor:
You, as a parent, are reacting like many others and starting another 'help' organization. Is the same thing happening with parents of children allergic to other foods? I think there are already too many parents of peanut allergic children who have either started a personal site (or) written books on the subject, unfortunately not without some errors or exagerations ... Re-inventing the wheel? Another form of sensationalizing?

NoPeanuts:
I concur that it would be irresponsible to write medical books purporting to be an expert, etc. but what's wrong with another 'help organization'? what's wrong with greater awareness? How is it a bad thing for parents to get involved and pro-actively manage their child's allergy? Is it wrong for Nadine O'Reilly to write a book for children that makes them aware of allergies? I say 'no'. Is it wrong for parents to start blogs and launch products that alert people to a child's food allergies? I say 'no'. There is absolutely nothing wrong with engaging people in a healthy and responsible discussion. Nothing on this site intends to be sensational. That being said, some aspects of a severe peanut allergy are obviously sensational so I am not sure how you avoid that when writing about it.

Doctor:
I don't intend to offend you and others reacting the same way, but I cannot see what you are doing as anything positive, other than just making a mountain out of a mole hill.

NoPeanuts:
I am not offended in the least. This prompted a great discussion in our home and you have opened my mind to the fact that I should be as balanced as possible, while staying true to the purpose of this blog which is to chronicle our journey. To that end I augmented my PeanutsNews feed on the home page with a Food Allergy news feed. I will also consider all allergies in our journey, part by default since our daughter has multiple allergies but also as a result of the similarities across all anaphylactic food allergies.

Again, I thank you for taking the time to engage in this discussion.

Liquid Egg Yolk?

So we had another scare this week.

Not nearly the same level of reaction as the Boxing Day episode but after a week of total vigilance on ingredients, labels, avoiding nuts, etc. I goofed.

Our daughter gets a treat if she doesn't throw food on the floor during dinner ... she's young remember! This week she has been great and on Saturday I gave her Haagen Dazs vanilla ice cream to celebrate.

She immediately broke out into a rash on her face and started to get a few hives. My wife rushed to the medicine cabinet for the Epi-Pen but it seemed that our daughter was in great spirits and the rash was not progressing.

We opted for the Benedryl vs the Epi-Pen and this seemed to do the trick.

The scary thing about the severity of these allergies is that you have to be 100% vigilant. The further challenge is that everybody who is going to care for your child also has to be 100%. You cannot let your guard down for a minute.

In this case our daughter had a reaction to 'liquid egg yolk' ... (at least we think that's what it was). There was the standard 'may have come in contact with peanuts' warning on the label but chances are it was the egg yolk. Interestingly, our daughter is only allergic to egg whites so I am guessing that because the raw yolk would have contacted egg whites the liquid egg yolk is our culprit

NoPeanuts Tip:
Try your best to avoid offending foods but always be prepared for an emergency.

My preliminary research indicates that it's common for children with these allergies to have multiple anaphylactic episodes before they are even 5 years old.