The Never Ending Maintenance Doses

You know how we spent months building up to baked milk? Well, the thing they don’t tell you at the allergist office when you embark on a build up or OIT- you have to keep eating that thing. Forever. Or there’s a risk that the reactivity to that food allergen can come back. Most of the research has been on peanut, but they’ve found that even just reducing daily intake can reverse all the work of the buildup.

We’ve already been through a similar issue with tree nuts. Even though we didn’t have to go through OIT, when she passed her food challenge, we had to continue to give her that nut on a regular basis or she might develop a food allergy. This wasn’t bad when it was just eating almond butter every few days. But now we have to eat almonds, cashews, and pecans on a regular basis. Even with the frequency of toddler snacks, there are still only so many meals a day!

At least with tree nuts, we can buy nut butters and spread them on a cracker and call it a day. To get baked milk in her, I’ve made blueberry muffins and banana muffins and chocolate chip muffins and pumpkin muffins and chocolate cake and cupcakes and there’s only so much baking I want to do. My older kid would gladly eat baked goods for every meal, but the one that is supposed to eat it daily? She’s so over it. Oh, we want a three year old to eat this muffin and she knows it’s super important to us? Yeah. She’s not touching that.

I’ve just given up on muffins and just make cake all the time. But even that has lost its appeal. This past week I tried to make cake pops for the first time. You know, cake crumbs, mixed with icing, dipped in chocolate with sprinkles? There’s no way a three year old would turn up her nose at that, right? And she can't just lick the icing off of the cupcake because it's mixed in! It's perfect! Right...?

A denuded cake ball. 100% of baked milk protein left behind.

I can’t wait until there’s a baked milk powder that we can just sprinkle in food. That way I would never have to make muffins again and she wouldn't have to eat an entire muffin every night to get her maintenance dose of baked milk. Because you know what she’s definitely not going to do? Eat an entire muffin.

Chocolate bunny is back baby!

Ok, ok, I know. Just last year I had sworn off the chocolate bunny. And the delicious cream eggs. And Reese's eggs. And really, truly, all of my favorite things about Easter. But after our success with No Whey on Christmas, I knew I needed to try their Easter candy.

We got a chocolate bunny for each kid, a chocolate sucker for each kid (the winning candy from Christmas), and a bag of both kinds of their mini eggs (I mean "veggs")

The cream veggs (you know, I really liked a lot of their names for the other candies but I just don't think I can get behind vegg. That was really a choice.) were good. Less cream flavor and more just vanilla sugar, but you know what? Vanilla sugar is great. Both kids liked this egg the best.

All the adults who tried the sun butter (pea-not butter) ones liked them the best. It was a delicious creamy filling, and though the outer chocolate was a little thick, it was still a good approximation to a Reese's egg. The kids didn't care for these- the little one, who has never had any Reese's magic, just thought it was gross. The older one, who recently ate a Reese's egg and said the real thing was the best thing he's ever eaten, said the knock off safe one was "a little good and a little bad." 

The best thing, though, was the chocolate bunnies. We made the mistake of telling the little one she could eat some for breakfast on Easter, then she refused to eat any of the (chocolate chip!!) pancakes I made and told me in no uncertain terms she would be having just candy for breakfast. 

All that remained after a breakfast of champions.

She ate a good half a bunny before devolving into a sugar fit. Next time she'll start with the pancakes first!

Flying with Food Allergies

So I had this blog post all ready to go before our trip, but then I just couldn't post it before knowing how the trip went. Our kid with food allergies was flying for the first time and stress level was extremely high. For us. Not for her. Her excitement level to ride on an airplane was off the scale and she was definitely not thinking about anaphylaxis on the plane. There’s a lot of advice online about flying with food allergies, but here are the main points:

1. Have your medications with you at all times and carry safe snacks. 

 

Pretty good advice for everywhere in life.

2. Call the airline before and explain your food allergies and ask if you can- preboard to wipe down the seat and tray table and see if they can create an allergen free “buffer zone” around your row. 

 

Another important tip? The wipe needs to be bleach or alcohol based because a regular baby wipe was found to not be effective in wiping down hard surfaces to fully remove all traces of peanut.

3. They also suggest avoid using airline pillows and blanket. 

 

Yeah, that sounds like good idea even without allergies.

So, how did it go? Well, I am happy to report while we had our epinephrine with us at all times, we did not need it! We didn't end up calling ahead, just talking to the attendants at the baggage checking area. They printed us a special boarding pass that allowed us to preboard. It took a few clorox wipes to sufficiently wipe down the seat and the tray and the seat belt and the arm rests and everything I thought she would touch. She unfortunately did not want to wear her mask on the plane which made me nervous, but that was probably a lot of ask of a three year old. I also tried to get her to eat her snack before boarding, but she still wanted to eat on the plane. Snacking really is the best way to pass travel boredom so I can't blame her.

The news right before we left was all about how peanut butter wasn't allowed through security anymore and everyone was joking about how peanut butter could be considered a "liquid." But you know what? Why are people bringing jars of peanut butter on a plane anyway?! You never know who you could be sitting next to. Save your death jar for after the flight. It can wait a few hours.

Liquid? Solid? It's poison! It doesn't matter!

All in all, flying with a three year old is a stressful experience, with or without allergies. At least our airline made some accommodations to keep her safe.

The Problem with Precautionary Allergen Labels

We’re almost three years into our food allergy journey and while I’ve gotten good at quickly reading food labels, there’s still one thing I just don’t know what to do with. Precautionary allergen labels (PALs) including “may contain,” “made in the same facility as,” and “made on shared equipment with” are everywhere in the grocery store. And I just can’t get a straight answer on what information they actual provide. Things we do know about these statements:

• They are voluntary- just because you have peanut dust floating around your facility doesn’t mean anybody has to know about it. Companies can remove them at any time even if their facilities haven’t changed.
• There are no regulations- to me “made on shared equipment” and “may contain” sound a lot more serious than “made in the same facility as”. But, really, there’s no differentiation between the statements. They carry the same risk and shouldn’t be looked at any differently!

May contain peanuts, tree nuts, milk, and wheat! What do you do when you make these zbars? Take the oats and mix in everything you can find?

When I asked our allergist about it, she said that the statements are usually just a CYA situation that the companies take to remove the risk of accidentally causing an allergic reaction. But, people have reported reactions to foods with PAL statements and research studies have found detectable amounts of allergens in foods with precautionary labels (a study in 2013 found peanut in 8.6% of products with PALs).

The problem is, there’s no way to know the actual risk from a precautionary statement because they don’t tell us anything about the manufacturing process. Is this protein bar made right next to the peanut one? Is it made on the other end of the facility, never coming in contact with peanuts? How much is the manufacturing line cleaned between runs? PALs don’t differentiate.

Even if the statement is just to protect companies from being sued, all of the advice that I have seen from FARE, Allergic Living, the FDA, Food Allergy Canada is to avoid foods with PAL statements. As with all food allergies, it seems like better safe than sorry is the way to go. In that 2013 study, the amount of peanut varied significantly- 3 to 510 ppm. But I have no way to know what my kid's threshold is and in the end, it’s just not worth it. She can eat other safe bars while we wait to try a new brand.

Even without a "may contain" statement (remember, it's completely voluntary), there are a couple of places that are very likely to have cross contact with the Top 9 Allergens. The most common:

• Dark chocolate: even without a PAL statement, dark chocolate usually contains traces of milk because it’s made on the same lines as milk chocolate. Apparently, the equipment is hard to clean because rinsing with water can cause bacteria to grow. So if you are allergic to milk, avoid dark chocolate!
• Oats: if they aren’t specifically labeled as gluten free, typically contain gluten because of how oats and other grains are handled during processing.

Skin Test Recall

Last December there was a recall on one brand of peanut skin tests because of increasing reports of allergic reactions following a negative result. Now the FDA is issuing a warning on all skin tests that anaphylaxis has occurred following negative skin tests and the negative diagnosis should be confirmed with an IgE blood test if the clinician feels necessary.

Earlier this year, I wrote about the impacts of false positives and false negatives on skin tests and the cost of false negatives is clear. If a patient believes they are not allergic to a certain food, they stop avoiding it, and are at risk for a serious allergic reaction including anaphylaxis. We know there’s a high rate of false positives, but in the past we’ve been able to really trust negative results because there is such a low rate of false negatives. So a negative skin test is very valuable. It means you can rule out that food allergy with good certainty!

Now that there’s been more reported false negatives, that throws into question how to interpret skin tests and really makes them a lot less helpful. We really need better screening tests for food allergies. Allergies are on the rise! Let’s find a better way to test for them!

Egg Replacer Taste Test

Now that we’ve successfully built up to baked milk, I have to give my kid a baked good containing dairy milk daily. And you know what she’s not having? Any more of those frozen plain muffins she was forced to eat for 3 months. I’ve branched out to banana muffins, blueberry muffins, and even a lot of chocolate cakes (which she still refuses to eat some nights!) I’ve tried my old vegan recipes (replacing the milk) a few times, but it feels a wrong to put real dairy in. Since I only have to replace one thing (egg) in normal recipes, I’ve been branching out into the land of store bought egg replacers.

First up, Simple Truth Organic Plant Based Egg Replacer. Which I bought because it was the only option at my normal grocery store and I needed it to make the those muffins last fall. There are only 2 ingredients in it- chia seeds and garbanzo beans. And you know what? I have both of those things at my house. And a blender. But that’s neither here nor there. 

The first time I used it, I followed the directions on the back- 1 tb of egg replacer mixed with 2 tb water for one egg. I let it sit for a minute (because that’s what you do for a flax egg) and that was a poor choice. When it was time to add it to the batter it had congealed and didn’t remotely mix into the muffin batter. The muffins were flecked with chia clumps that my kid expertly avoiding when picking at her muffin.

The second time I tried it, I listened to the baked milk muffin recipe that said to use “1.5 tsp egg replacer” and just added that to dry mixture. Well, that was an even worse choice. The result was the gummiest muffin I have ever tasted. The package says it’s equivalent to 34 eggs, but I think it should be thrown directly into the trash.

Next up, Follow Your Heart VeganEgg. This was a roller coaster. First of all, the packaging. What is with the pretend "egg carton"? Once you open up that part it’s just a bag. A bag of powder. There is absolutely no need for that extra packaging. Not only does it take up more space on the shelf and when shipping, but it also wastes cardboard! It does have a note that the outer packaging is make 100% from recycled materials. But you know what would not create any new waste? NOT HAVING IT.

Okay, after I finally got it opened, I tried to make sense of the directions. This egg replacer is primarily for cooking on the stove to simulate scrambled eggs. There’s one set of instructions for how much water to add for that purpose and then a completely separate set of instructions when used for baking. Once I figured out the correct amount of water to use, I opened the inner bag and was accosted by a sulfur smell. So much so that I was hesitant to add it to my cake mixture. I get wanting your fake egg product to smell like eggs, but maybe shying away from rotten would be a good idea. I forged ahead holding my nose, and added it to the muffin mix.

Guys. You’re never going to believe this. These muffins were AMAZING. Taste: no sulfur. Texture: great. Crumb structure: just like the real thing. I couldn’t believe it! I ended up making chocolate cake with it, too, and it was the best one I’ve made without eggs! Is it worth the smell? I think so! Will I try them scrambled up in a frying pan? Not in a million years. 

My last trial was Bob’s Red Mill Egg Replacer- which is the egg replacer I was most familiar with but every store I went to was sold out of (I didn’t realize the avian flu causing an egg shortage would effect our egg free family!). Packaging: great. Ingredients: no allergens, mostly potato starch. Instructions: super clear. I mixed it up with water and hoped for the best. The cake was good, fluffy, but a little less moist than the weird Follow Your Heart brand. I’ll definitely use the rest of the package, but the standard has been set and this is a definite runner up.

Our First Successful Switch Witch

Valentine's day: another candy themed holiday, another chance for anaphylaxis! Just what I’ve always wanted. But, another holiday where candy is given without thought about food allergies, is another chance for the Switch Witch! And this time, we knew the actual rules.

Okay, okay, so we probably should have called "Switch Cupid". But that doesn't rhyme and witches need love, too!

We opened all of the valentines together, setting aside things that had allergens in them, and letting her choose which of the safe candy she actually wanted. She could eat as much candy as she wanted after dinner and then decided what additional candy to give to the Switch Witch. The more candy she gave away the better prize she got.

Not only did she not feel left out when some of her candy got taken away, but her brother wanted to play, too! He decided to give up a surprising amount of candy (even some that he has been hording since Christmas) to get some puzzles. The Switch Witch’s backstory got more and more elaborate as the night wore on- candy is like her vegetables, she gets all of her nutrients from it, she stores all she gets at holidays and then has to live on it throughout the year so the more you can give away, the happier she’ll be… I think there’s a book that has an actual origin story, but we definitely don't have the book. So might as well make it up!

So, happy top 9 allergen free valentine’s day to you! May the Switch Witch enjoy her spoils!