Component Testing (Pt.2) - Why Should We Care?

So, in Part 1 of this labor of love, I talked about EIA vs. component testing for allergies. If you followed the science, you can start to see some situations where component testing might be helpful to figure out what's going on with our kids:

1. To identify cross-reactivity between food and pollen.

There are six peanut allergens that are currently the focus of component testing: Ara h 1, 2, 3, 5, 8 and 9. It's important to note that there are at least 24 identified, potentially allergenic epitopes just for Ara h 1!

The first three are what are known as seed storage proteins. They're important to the plant to ensure the next generation of little plants is grown. As a result, they're extremely durable and usually make it intact through break-down process in the stomach. Ara h 9 is a lipid transfer protein, responsible for moving fats across membranes within the cell. Again, it's a pretty hardy little beast.

In contrast, Ara h 5 and 8 are wimps. They also have homologues across many other plants, especially pollen from those plants, so the chances of cross-reactivity on a traditional allergen panel are high.

The traditional method of testing that uses a natural extract cannot tell these two types of results apart. One recent study showed that 11.8% of kids tested using a traditional RAST test showed up positive for peanut. However, when challenge tests were conducted, only a quarter of the kids actually reacted when they ate peanut. This roughly correlates with the estimated 1-2% rate of peanut allergy in the population.

The uKnow test is currently being marketed to parents whose kids had a positive peanut test but who have  never experienced an actual reaction to peanut. If you are in that category, this test could change your life.

Remember those look-alike proteins, or homologues? In the case of kids who test positive, but who really don't have a peanut allergy, there's a distinctive pattern that shows up:

Remember that Ara h 8 is a wimp. It mostly breaks down in the stomach to the point that the body doesn't react to it. That's why it often causes an itchy mouth but limited other symptoms.

This may be the explanation for the fabled "mild" peanut allergy. These kids will all have itchy mouths. Some of them may even have a few systemic symptoms. But, the thought is that they are not likely to tip over into serious anaphylaxis. (Of course, whether you're ready to turn in your epinephrine injector under those circumstances is between you and your doctor.)

Another great example of where the test is useful is my son's situation. His January RAST for hazelnut was ~3, yet the RAST just taken for the FAHF-2 study in April was a 12. That's a huge increase for a RAST in just four months!

It turns out that hazelnut (Cor a 1) and Birch (evil birch Bet v 1!) are strong homologues.¹ The large increase in his number during tree pollen season is a good indicator that we're probably looking at a less serious form of hazelnut allergy. We're hopeful that a component test can take this worry off his plate.

2. Possibly: to provide more information on the timeline to outgrow milk/egg allergy.

Milk and egg allergies are really tough on parents! For 17 years now, we've asked the question of our allergist that I'm sure all of you MA/EA parents ask each time: "when will my kid OUTGROW this allergy?!"

There are some things scientists have found out about these allergies. As with peanut, if kids are allergic to multiple allergenic proteins, it generally makes the allergy more persistent. Additionally, if a child's body can recognize epitopes when they're not folded up in a protein, that also means they're likely to have the allergy longer, maybe lifelong, and potentially have more serious reactions.

A traditional RAST test can crudely test for the different components of milk: whey, casein, α-lactalbumin, β-lactalbumin, but it can't identify specific epitopes and it can't demonstrate whether the allergy is to "folded" proteins (not as bad) or the "unfolded" strand of protein (bad). The component test, though, gets down to just the very small (sometimes just 10 amino acids) unfolded "hot spot" on the protein that's causing the problem.

For milk and egg, there are "hot spots" that have been associated with severe, persistent allergies. For egg, these hot spots are all on a protein called ovomucoid.²  For the persistent milk allergy kids, the epitopes were associated with the casein protein.³

So is this test really able to tell which kids will outgrow their milk and egg allergies? The answer is maybe. Some doctors are already using it to look at patterns in milk/egg and determine whether introducing baked milk will be helpful in speeding up the tolerance process. It's definitely something to ask your allergist about.

NOTE: Right now, ISAC (Immuno Solid Phase Allergen) testing is being done by one experimental laboratory (Phadia), with only 103 components from 47 allergens available.⁴  Your allergist may not have a relationship with this lab or be ready to roll this out to patients.

3. Future hope: to separate "potent" epitopes from less harmful ones and find the pattern for life-threatening allergies.

This is where we start to get into weighing the cost of the test against the information it provides. If you have a child who has already experienced a reaction to peanut, why might you want to have the test done?

So far, 95% of people who react to peanut in real life and who have had component testing show a sensitivity to Ara h 2. However, there also seems to be a correlation between how many epitopes of peanut you're allergic to and how allergic you are.⁵  The current theory for why is related to T cells, the first type of immune cell that responds to the allergen. (The Allergist Mom just did an awesome post on all the science behind this if you are interested.)

T cells are specific to the epitopes to which they bond, but the T cells all compete for the same pool of resources (the "antigen presenting cells" Allergist Mom mentions). Like fighting kids, they're fine if they think all the toys in the room are available to them, but when they see other kids who might want the same toys, they get upset and all hell breaks loose. So...the more epitopes a peanut-allergic person is sensitized to, the more likely it is that their reaction will be severe.⁶ 

However, so far there is no "smoking gun" epitope, or pattern of epitopes on any of the allergenic proteins, that signals potentially fatal reactions. Like fingerprints, the patterns from person to person can be very different. Scientists are still busily identifying and characterizing all the epitopes for peanut. Plus, different populations show different patterns of epitope sensitization, and even allergen sensitization (for example, Ara h 9 is more prevalent in Mediterranean populations). In order to answer these questions, they'll need a lot more data from people willing to take the test. However, those people taking the test will probably not benefit right away.

Are you willing to spend the money to get a picture of your kid's epitope "fingerprint", even though the data to understand what it means is not yet available? We're still thinking about this one.

4. Future hope: to help determine potential pitfalls for MFA kids.

When my son was around age 4, we went through a horrible period where we thought he had idiopathic anaphylaxis. Instead, it turned out that he had developed allergies to a wide range of legumes. The probable culprit? Ara h 1, which shares a seed pod protein with many other legumes.

The problem is that not all kids who are positive for Ara h 1 have allergies to other legumes! There's likely some other mechanism involved in sensitizing children to these look-alike proteins. (Remember the faces from the homologue example? Some people are just better at telling faces - and proteins - apart than others.)

This test has great potential to eventually tease out these linked proteins, far better than the crude botanical family relationships many of us use today. It's definitely not ready for prime time. But maybe someday soon, your doctor will be able to look at your child's peanut epitope pattern and make a good guess as to which tree nuts may or may not be a problem.

So...all in all, component testing is promising...but probably not 100% there yet for anything except for identifying those peanut allergies that are most likely cross-reactions to pollen. But what a gift this will be to those parents who are terrified their child is peanut allergic on the basis of testing only! And apparently, that's a good percentage of the kids out there.

PLEASE NOTE: these are MY thoughts on the value of this testing only. You should definitely discuss this with your physician. Additionally, I would love to hear from others interested in the science as to how they see this playing out in future.


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Component Testing (Pt. 1) - The Science

I've been seeing a lot of articles and comments lately about component testing. That's gotten me to thinking about under what circumstances it would be useful.

To explain what's new about component testing, I first have to explain what the current method of testing —  enzyme immunoassay — involves. (While I do have some background in the lab sciences field, I definitely welcome any corrections from actual scientists! Leave them as comments, please.)

EIA (sometimes called ELISA), is done using plates that are preloaded with the allergenic substance into a indentation called a well. Your doctor checks off the allergens she wants tested (egg, milk, peanut, etc.) and the technician puts a sample of blood from the test patient into the well that contains the appropriate allergen. The analyzer then sends the panel through a series of chemicals and processes that encourages the antibodies in the patient's blood to bond with the purified antigen/allergenic protein (like egg) that's in the well. The extra, unneeded gunk (technical term!) is washed away and then a chemical is added to make the bonded antibodies/antigens either change colors,  fluoresce (FIA) or become radioactive (RIA) so the analyzer can count them up.

The RAST (radioallergosorbent test) numbers we get back as a result is measures in kilounits per liter (kU/L), where the "unit" part is arbitrary. (One of the problems with early RAST testing is that the different analyzer manufacturers did not standardize on how they reported results, so result sets from two different analyzers could be very different.) This number is just telling us how much antibody from the patient's blood actually stuck to the plate.

The allergen extracts used in the current process are a little clunky. Laboratories extract the allergens used in the test panels from natural substances. This can be a big problem because, for example, using different varieties of apples or even a male vs. a female cat can result in variations in the amount of some proteins. The extracts are continually improved and modified, but different individuals or populations can be sensitive to different proteins, so the test is a one-size-fits-most process.

Additionally, proteins in the body and proteins in the lab don't always behave the same. For example, stomach acid can pull pieces of them apart, changing their three-dimensional shape and therefore how they bond. Other blood components (like plasma) can also alter how much antibody sticks to the plate. All of these things can contribute to false positives and false negatives on tests. That's why RAST test results have to be interpreted in conjunction with patient history and/or skin prick testing.

The "Ep" epitope areas on the protein hook up with
the "Ab" antibodies, triggering the immune response. 

Instead of whirling up a batch of peanut butter and purifying it to create an extract for a plate, component testing focuses very narrowly on just a small strand of protein called an epitope. These protein "hot spots" are the trouble makers on a food that cause the immune system to go nuts. A food protein may have just a few of these hot spots, or it may have dozens. And, to make things fun, a person may react to just one epitope within a protein or to several.

The enzyme immunoassay process used up until now contained ALL the appropriate epitopes because it started with a natural source. However, there was no way to tell which epitope or epitopes were causing the problem. In contrast, a component test uses a recombinant DNA process to make only a specific epitope. If the child is positive, he or she is positive only to that epitope.

Just like with faces, some bodies
are better at telling proteins apart 

There's another concept that can explain many of the false positives we experience with RAST testing: homologous proteins. Often just called homologues for short, these are look-alike proteins.

To give you an example, the birch protein (Bet v 1) looks like a whole lot of other proteins to the body, including those in celery, hazelnut and apple. Sometimes a primary allergy to birch pollen can cause a food allergy test to show a false positive. For many people, this cross-reaction only causes oral allergy syndrome (OAS) and their reaction never proceeds beyond an itchy mouth.

Sometimes homologues are harmless misunderstandings...and sometimes they mean a little bit more.  This study from 2004 shows that up to 40% of patients sensitized to birch pollen experienced more than just an itchy mouth when they ate peanut butter, even though their peanut allergy was the result of their body thinking birch (Bet v 1) was really peanut (Ara h 8). Evil birch can also cross-react with soybean (Gly m 4).

So...the takeaway is that there's a continuum of severity of reactions when it comes to these look-alike proteins. Some are just not likely to be problematic, but with others, whether a full-out allergic reaction occurs may depend on the individual's body chemistry, how much it "looks" like the other protein and how durable the protein itself is. Knowing which protein is involved is only the first step in the process and a food challenge is still the best way to figure out if an allergy exists.

So now the question is...which epitopes cause the problems in people who are allergic? And why would knowing which epitope help us in any way to understand our child's allergy? Can we use this technology to know which allergies are life-threatening? Persistent? Interlinked, so we can predict which foods not to give our kids? Or is it just another $300 we'll never see again?

Part 2 - Why Should We Care.


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Getting What We Need

Lately, I've been somewhat removed from The Quest to Get What My Son Needs. But now, with college, The Quest begins anew.

About a week ago, he came home, beaming from ear to ear. He had been awarded a scholarship from a local organization to attend to a prestigious summer program for juniors interested in government. This is a GIANT deal for him. My son is quiet and shy, so the fact that he was able to impress his interviewers enough to be chosen for this says a lot about how badly he wants to do it. But it's a full week away at a college campus, with hundreds of other kids.

It feels like pushing the boulder up the hill again, writing all these emails to start the process. But write them I did: to the camp organizer, the organization that gave him the scholarship, the campus health service, the food service. And now I wait.

As I sit here, fuming that this is taking so long ("If I have to COOK for the whole week I need to get STARTED, you know!"), it has made me realize that I have gained some insights into what keeps things rolling and what just causes the boulder to settle in deeper. I offer them here to you. (And me. I'm definitely writing this for me. Maybe I'll listen to myself this time.)

1. Don't tell the whole story to everyone. 

I still fight this. I have food allergy diarrhea mouth, as I've established elsewhere. I want everyone to know right away that they're FOOD ALLERGIES and they're SERIOUS and they NEED TO LISTEN!

But usually I get passed from person to person until they actually establish who's going to be responsible for the food, responsible for the health care, responsible for the supervision. At the beginning of the process, the people who will ultimately be responsible are not even necessarily selected yet. (That will be the case with the adult counselors for this program - I am simply writing them a letter, explaining my son's health issues and seemingly excessive medication consumption.) Sending a long email up front just makes us look bonkers. A few sentences will suffice until you've identified the right person.

Likewise, I truly believe that leading with Dead Kid Stories does not help us. Other people just don't have the frame of reference to understand our fear and focusing on the worst-case scenario can make us seem over the top.

2. Don't carry over resentment from the last battle.

Yes, it was really hard to deal with that Outdoor Ed guy. Yes, he made a mistake and missed an ingredient that could have resulted in a reaction. But leading with that story just makes them defensive because they will identify with people in similar roles to their own.

If there's something to be learned from the incident, try to make it neutral ("we've found that it can be hard for people unfamiliar with our son's allergies to catch all problem ingredients") instead of specific ("yeah, that last food service guy totally screwed up"). It also never hurts to express faith that they are competent at doing their job, even if you don't know (or believe) they are. Butter the toast, baby!

3. When you find the right person, be specific and factual about what you need.

People don't read any more. (I like to think my blog is an exception...but really - shorter is better.)

That means make a LIST with ACTION words. Any sentences that start with "We think" or "We feel" or "In the past" should be ruthlessly removed from letters and replaced with sentences that include an action, a participant and a timeline:

I will need to review all labels prior to the start of camp
You will need to develop a set menu by 5/30 so we can review it together

We all want to tell our story to channel our anxiety, but that's not as important as getting at the heart of what it is we're asking them to do.

4. Show a united front.

I always copy in my husband and I use his work email. That tells the people on the other end that they are dealing with TWO crazy parents (and that one of them works for a respectable company that must see SOMETHING in him). And yes, I've found that his maleness and tallness can also be key weapons in getting people to pay attention and not condescend.

We don't have to like sexism to use it to our advantage.

5. Keep it simple and look for the obvious pitfalls. 

I felt pretty good when I heard the food service person say "a lot of mothers of milk-allergic kids have just sent desserts and breads." Smart decision! There's no way a food service is going to get these areas right, since finding these things (and even making them) can be a challenge. Don't ask them to do flawlessly things that you have difficulty doing yourself.

6. Be honest about your child's capabilities. 

It's easy to feel defensive about whether our children are ready to be on their own. But it's really important to give an honest assessment of their capabilities with:

• Reading labels
• Advocating for their own needs (finding food service, speaking up if something doesn't look right, questioning adults about ingredients in prepared meals)
• Self-administering medication 
• Understanding that an adult has to be contacted IMMEDIATELY if a reaction is suspected, even if that means they are the awkward center of attention

If they can't do these things, we are responsible for ensuring there's an adult there to help, even if that adult has to be us. Don't let the school or camp shame you into not attending if you really feel you need to be there!

7. Do a walk-through with your child. 

If it's possible to do this on location, great! If not, you'll have to do a little acting.

Walking through the event with a series of questions is a great way to uncover issues you haven't thought through enough. Here are some of the "walk through" questions we've started to compile:

• Is there space on the bus for your food? Can you carry everything once you get there? If not, who will help you? (Or will I need to drive down with you...)
• Where is the freezer/pantry to store foods? Can you put things in the freezer right away, or are there activities right when you get there?  
• Who are you going to tell about your allergy? What will you do if your roommate brings a bunch of peanut butter with him?
• Will your meals be prepared at the same time, before, or after the others? Who is your contact in the cafeteria? What questions will you need to ask them about each preparation?
• How will you carry medication and ensure it travels with you if there's an emergency?

You can see my point. Envisioning each step along the way uncovers all sorts of opportunities for problems (unclaimed, thawing food left out with luggage, no time for meal prep, isolation, social issues...). It's much better to talk through it all prior to the event than deal with the phone calls (assuming they're even allowed) at the event. 

8. Take ONE step at a time and ask for help. 

It's a big boulder. They're ALL big boulders and they just get bigger as our kids get bigger. But they can all be pushed, and it's much easier to do it with a group.

There are always going to be people who don't get it. After a while, it's easy to think of everyone as just another boulder in your path up the mountain. With some people, there's nothing we can do but go around them. But many people will help if we let them...and if we don't let our assumptions and prior experiences color our interactions.

Yes, there are times when I'm pushing the boulder that I just want to step out of the way and FLATTEN some of the people I'm dealing with. But every step is worth it when we see our children standing at the top, successful in one more step toward independence. 

9. Give Don Quixote Junior the lance. 

I protect my kid too much. I do too much for him. "But it's hard!" I say to myself. "There will be time for him to learn it all...he should just have fun now."

That's when I have to take the helicopter mom inside myself and shake her silly. "Time's a tickin' -- let HIM write the emails!"

Why is it so hard to let our children do what they are capable of doing? Am I so happy to have this job that I really want it forever?

10. Don't listen to that little voice. 

I wrote tips 1-8 last week. When I came back to this, it felt like a load of crap.

See, today I feel overwhelmed by what's required. I don't WANT to call this woman and follow up. I'm afraid she's going to be mean, or condescending, or clueless. I'm afraid my child will never be self-sufficient enough to leave home. I'm afraid he'll die at camp because I didn't do a careful-enough job.

That little voice —  the one that just whispered "can't do...she's mean...she hates you...you're a bad mother...you're going to fail" needs to be SUCKED OUT INTO THE VORTEX OF SPACE!

None of the voices in my head ever have good ideas. Why do I keep listening to them?

Time to call the camp director. Wish me luck.

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My Food-Allergy Halo Needs Some Tarnish Cleaner

I want credit!

It was a pretty typical weekend for us. My son came home hungry Friday (when does he not?), so I made egg rolls at the same time I was finishing the ladyfingers. Saturday: made the fake tiramisu layers and assembled it. After all that, we get to the party — and someone brought an unsafe cake.

I don't think I'm that bad a party guest. So what if I spent most of the party hovered over the tiramisu, trying to prevent people from double dipping or dropping cake parts into the bowl? After all that work, I wanted to take the leftovers home, dammit! And so what if I made one or two snide comments about people who bring cake without warning? It's not like those people were close relatives!

On Sunday, I went for a walk with a friend. I spent the first 20 minutes talking about the agonies of trying to get things organized for my son's week at a college summer program. Calls about food, emails about food, emails about campus healthcare, options for carrying meds... After I'd been going on for a while, the light went on in her eyes and she said "oh yeah, your son has FOOD allergies!" She clearly had no idea what I was talking about all that time.

Is it even possible to "get credit" in a world that is so OBLIVIOUS to what we go through? Got me wondering philosophical thoughts:

If a mommy falls down in the food allergy forest and no one is around to hear her scream, does she make any sound?

What's the point of polishing one's halo if no one can even see it?

Oh well. *I* know I'm a saint. I'm sure you are too. I'll pat your virtual back if you'll pat mine.

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I'm even attempting to Tweet now!


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World's Simplest Egg Rolls

One safe precooked sausage - we like Amy's, but even breakfast sausage works great
1/4 of a small cabbage
Any other veggies you want/have - carrots, mushrooms, tomatoes, onion all work great
A nice big chunk of ginger root. (I buy it, peel it, dice it and keep it in a Mason jar in my freezer.)
A dash of Worchestershire sauce, sriracha chili paste, or any other hot sauce you like
Fresh cilantro, if you want/have

Whirl all this together in the Cuisinart or blender. 

To assemble, you'll need safe wonton wrappers (I use Nasoya), a binding agent (I use beaten egg, but you can use plain water if you have egg allergy), a place to assemble, a brush and your mixture. I also like to use a Tbsp. measure to create the little mounds inside each egg roll. I make smaller ones as they cook faster, but you can get the longer shells and make traditional egg rolls too.

You'll also need a deep fryer or a pan. I use a stainless steel small pot. WARNING: deep frying in a pot will wreck it. Once you've chosen a pot for this, it's your forever frying pot. Don't use Teflon®-lined pots — they don't withstand the heat.

Assemble by brushing sealer on the top and right edge of the wrapper. Put your filling in the middle and fold so the edge of the top layer falls just short of the bottom layer. You can then fold the bottom over the two sides to keep the filling more secure.

Gently place each in the heated pan. (You don't need to fill with oil - just cover the bottom so there's enough to cook one side.) I give them about 20-30 seconds a side, and then drain on paper towels. They're great with mustard mixed with honey, or a little apricot jam mixed with vinegar.


World's Not-So Simple Fake Tiramisu 

Make the ladyfingers. You do NOT need to pipe these from a pastry bag unless you care that much about what they look like. I just use a spoon and spread them on parchment paper.

Make the syrup: 1/2 cup water, 2 tsp instant coffee, 1 tsp (or more) rum (optional)

Make the pudding layer:
1/2 cup sugar
3 Tbsps cocoa powder
2 3/4 cups Rice Dream or other safe sub
1/4 cup cornstarch
Dash salt

Bring to a boil, reduce heat and cook until thickened. When thick enough, remove from heat and stir in 2 ounces rich chocolate (I use Sharffen Berger bittersweet) and a tsp. vanilla. 

Make the cream layer:
1 carton Rich's Rich Whip

Whip until thick, like whip cream. Stir in 1/4 cup of the coffee mixture.

Layer the ladyfingers and pour remaining coffee mixture over them. Layer the pudding, then the cream, then top with additional ladyfingers and grated chocolate if you like. (I also use cocoa nibs - crunchy!) Cool thoroughly before your party.

Stand over bowl and guard it from contamination during party. (Optional, I suppose.)

Conditioning Our Food-Allergic Children

Thank you to everyone who supported my last blog post. I did not expect my opinion to be popular and was really touched by the support I received. ("Mom! There really ARE people in the world like me!")

However, as always, there were critics. The main criticism seemed to be: "we NEED horror stories in order to keep our children safe."

Conditioning.

What we're talking about is conditioning. We all do it as parents from almost the day our children are born:

Say thank you, darling.
Don't wipe your snot on your hand! Use a tissue!
Quit hitting your brother!
LOWER the PUMPKIN to your FATHER and come DOWN OFF THAT ROOF!

(Well, o.k., some of you probably condition slightly differently than I do.)

Food allergy conditioning takes both positive and negative forms:

1. Avoiding food. No casual sampling at grocery stores. No unknown cake at parties. Smile politely and nibble the parsley at buffets. Get only a soda if your friends go to a restaurant. We teach our children to delay gratification every single day in a world filled to the brim with temptations. The question is: do all children have the same capacity for delaying gratification (i.e., avoiding allergenic foods)?

The video above documents the famous "Stanford Marshmallow Experiment" in which children ranging in age from 4 to 6 are offered a marshmallow. If they can wait until the researcher returns, they're promised TWO marshmallows.

About 70% of children tested do not eat the marshmallow. And – guess what – later in life, their ability to delay gratification correlated with higher SAT scores and general school success.

So what does this mean for us allergy mothers? Children can be conditioned to avoid foods/delay gratification. However, continuous reinforcement is required for many kids. Most will give up the Halloween candy if the promise of the toy they're trading it for is large enough and talked about enough, and if they have developed enough natural ability to wait. But a large percentage simply cannot wait. They are hard-wired to have more trouble. If you have one of these children, you're going to work twice as hard and twice as long at conditioning avoidance as other mothers, and there may be a genetic set-up that simply makes your child more impulsive, no matter what you do.


2. Checking ingredient labels. Read every label, every time. That seems so straightforward! So why do children so often turn that into "read labels when a food looks different"?

My mother, the clinical psychologist, tells me that this is a brain immaturity issue. Grouping objects ("I know all pretzels are safe") is the way they develop a manageable frame of reference for the world. However, that frame of reference is being continually refined. By kindergarten, most kids can group objects using two variables ("pretzels that are safe for me" vs. "pretzels that are not safe for me"). However, the sets and subsets of safe foods and ingredients can be very complex, meaning that children have a difficult time consistently grouping items until well into grade school ("Newman's Organic pretzel rods that are safe for me vs. Frito Lay RoldGold pretzel twists that are not safe for me).

Reading a label also requires a number of skills we don't even think about as adults. We know that ingredients make up foods, and that foods that look the same can have very different ingredients. We need to have the vocabulary and spelling skills to be able to interpret difficult ingredients. We need to understand grammatical rules of punctuation and grouping (e.g., "soy flour" vs. "soybean oil, flour"). We need to hunt for information that appears in different places, without dependable patterns. We need to consider somewhat esoteric factors ("was this chocolate manufactured in Europe where labeling rules are different?"). We may need to understand whether a food is regulated by one agency vs. another (such as the FDA/USDA division in the U.S.). We need to double-check our work.

So, in addition to conditioning our children to read labels, we also need to teach these skills sets, some of which are not fully in place until the teen years.


3. Carrying medication. A teen boy's pathological need to avoid carrying anything that looks even REMOTELY like a purse and a teen girl's pathological need to fashionably fit with her friends makes this one a project for all of childhood. It isn't just about forgetting. It's also about image, which means it needs to be renegotiated as the child's self image changes.

It seems like a good idea to get our children used to wearing their medicine on a belt or clipped pouch at an early age. But, social issues quickly creep in. Teasing about the "bulge", changing for jr. high gym class, fashion...all can make our kids toss our careful conditioning out the window.

We can look for the obvious opportunities to help our kids blend in. A set of medication in the school backpack is easy. A bag on the back of a bike is usually acceptable. An Epi in a coat pocket, or cargo shorts. But conditioning our children to always carry medication usually means conditioning them to carry it in the same way every time. That's where parents of teens run into trouble.

And, conditioning requires reinforcement. In the marshmallow study, kids get the marshmallow. When it comes to carrying medication, there is no marshmallow. Kids have to consistently do something that has no reward, and often has a social consequence from their perspective. It's easy to see why carrying meds becomes a flash point.

Interestingly, the best defense against risky behavior seems somewhat counterintuitive: arguing with your teen. A recent study showed that effective, give-and-take arguing with parents actually helps kids resist peer pressure. In situations where mothers continually reasserted their view and the teen backed down, the teens were later MORE likely to take risks than in situations where mothers listened to their teen's opinion and ceded some autonomy. In other words, teens who agree with their mothers the most are also the ones most likely to ditch their medicine bags once they leave the house.

I don't think there are any easy answers on this one. A bad reaction can help reinforce the need to carry medication, but that's a very dangerous method of training. Perhaps the e-cue epinephrine device (supposedly coming to market in November) will make a difference for our kids.


I suppose the point of this post is to question the practice of using anaphylaxis deaths as a means to reinforce conditioning. If you look at these three areas where conditioning is required, brain development and acquisition of skill sets is also required. No amount of fear is going to help a child learn the complexities of label reading, or learn to group object sets faster. And, as I pointed out in my post about exaggerating food allergies, constantly harping on death, a consequence a child is often developmentally unable to process, can cause a child to become desensitized and overly pessimistic.

We can make our kids feel helpless and hopeless with horror stories. Or, we can give them the training and conditioning they need to effectively manage their allergy, along with a positive outlook and belief that they can manage their allergy.

Isn't it time to limit the ghost stories to the family campfire? Much better to spend the time on label reading, appropriate avoidance and carrying meds so we can ALL safely enjoy the s'mores.



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A Letter to The Mom Whose Son Just Died

Dear grieving mother:

I'm not going to put your name, or your son's name, in my column. But I know there are dozens of support sites, bloggers and magazines that are doing just that today. The sad reality is that allergy deaths sell, and underneath the food allergy support community is a big money-making machine.

But I want to do what I can to apologize for my community. Because I know what you're going to find when you Google your son's name in a month, or a year, or when you've put the freshness of your grief behind you. Maybe you'll run across my column, even without a link to his name.

I'm so sorry that you'll find parents who look like they're blaming you. Oh, they'll couch it in terms like "it's just so sad they didn't get educated by their doctor or the internet." But, underneath, they're going to take apart your choices to let your child eat at a buffet, without an Epi-Pen. I know why they do it. They need to distance themselves from you, to essentially say "this could never happen to my child because I'm a better parent who makes better choices." But I know it's going to be heartbreaking for you to read their blame, and I'm sorry that you'll have to.

Keep in mind that the vast majority of these parents do not yet have teenagers. The uptick in food allergies has increased exponentially since the early '90's, so your 15-year-old was one of the oldest allergic kids. My son is 17, so I have had some experience with "but my med bag looks like a purse, Mom!" and with wanting to fit in with other kids. Peer pressure is rough. Parents who still have the illusion of control because their child is five, or nine, may not have the same opinion in a few years when their child is 15, or 17.

They also may not understand that precautions that worked can suddenly stop working during the teen years. Your son died at the height of the pollen season, at the onset of puberty. The reality is that there may have been nothing anyone could have done to stop the reaction. I read that he got at least some epinephrine  —  there's simply no guarantee that more would have made a difference. You won't see that posted much on the boards you read because it scares the crap out of other moms. They would much rather believe you did something wrong than to believe it could happen to anyone. But it COULD happen to anyone. I'm just so sorry it happened to you.

I am not going to post on your son's Facebook memorial page. I know you are faced with the tough choice of making the page private and having to screen for those who really knew your son and might need the chance to interact and remember him, or leaving it public and allowing anyone to post. And they WILL post. The mothers from my community will feel the need to leave their condolences. They won't take into account that there are soccer friends and community members and teachers whose posts will get lost because they overwhelm your board.

Perhaps you'll become an advocate for the food allergy community in the hope that some good can come from your child's death. Or perhaps you'll  tell us all to screw ourselves and leave you alone. Unfortunately, only the first role is going to be supported and I'm more sorry for that than I can say. Regardless of what you choose, they will use your son's name as a lesson to scare their kids, and as fodder for any parent who might stray from the path of the most rigid precautions.

Yes, it's human nature. But human nature is ugly. I'm so sorry you'll have to deal with all of this on top of your son's death. If he had died in a car crash, or from drowning, or from any of the other myriad common ways we lose teens, he would not be splashed all over the internet. I'm sorry you didn't get to choose this. I'm sorry that, even if you do choose to fight it, there's nothing you can do to control it. I'm sorry for my community. They do a lot of good, but at times like this I'm just ashamed.

FAB

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To my readers: I realize a lot of you will be pissed off and say "but I didn't mean it that way" when you read this. You'll may even unsubscribe from my blog. I'm angry enough that it's worth it to me to have at least had my say. Please - have the decency to just leave this family alone and not dissect their choices. They haven't even BURIED their child yet!

Food Allergy Public Service Announcements

You may have seen some of the new PSA-type graphics going around the various advocacy groups. This one is from the Arizona Food Allergy Alliance.

I'm not exactly sure what's going on here. I think most people would look at this and ask "there is no cure for eating?" Even if you assume people knows it's about food allergies, I can't figure out who the audience is supposed to be. Sadistic mothers who keep delicious bins of cookies on the kitchen counter that their allergic child cannot eat? Parents who don't supervise their kids during playdates?

Snark aside, though, I've seen a lot of these type of graphics floating around lately. Apparently the popularity of Pinterest has made it important to capture your message with an image and 10 words. So...in the interest of doing my part for Food Allergy Awareness Week, I offer my own public service announcements.

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Designed for every friend or relative who's ever asked you why you don't just get "one of those pen/needle thingies", or whether you've heard that they've cured allergies.

Tired of your kid being left off the birthday list because "it's just too much hassle" to invite him or her? Now there's a special message you can send to the parent of the birthday child!

Ah, society moms. Their judgments are always so helpful. Walk a mile in my Clarks before you come knocking on my door, lady!

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