Are We Afraid to Let Go of Food Allergies?

I'm disheartened.

A couple of weeks ago, I sunk a lot of time into researching, and then explaining the value and limits of component testing. I was so excited at the end of my research because I realized this test has the potential to change the lives of thousands of families who believe their child has a food allergy when they really don't.

Think about it! 10% of kids test positive to peanuts, but only 1-2% have a demonstrable reaction. Why in the world aren't those families who have never experienced a reaction jumping up and down in joy and rushing out to get this test? 

I realize it's not cheap, so clearly money is a factor. But the reason I'm disheartened is that I saw the first of probably many "not ready for prime time" type messages make the rounds of the chat boards over the last couple of days. It involved one case where a child had a reaction to peanut despite a low Ara h 2 measurement. 

The boards were peppered with words like "disappointing" and "researchers don't seem to know a whole lot" and "the test cannot tell you if you are safe from anaphylaxis."

All this on the basis of one child, one reaction.

YES, this is a test, and tests are not perfect. Yes, there are exceptions to every test. Yes, a food challenge will definitely be required if the test shows low Ara h 2. Yes, some kids will have the test done, show low Ara h 2 and still fail a challenge. But does it really make sense to sit on the sidelines, waiting for the test to be perfect, and potentially miss out on years of worry-free childhood? 

Honestly, it seems to me that people are looking for reasons to avoid this test, to talk themselves out of it. There was such a palpable rush of relief from so many people. Yay! We don't really need to do it yet!

Why? Why would that be? I have asked myself over and over again this week. Are parents really so phobic about the idea of a subsequent food challenge that they are willing to just bypass the test altogether, rather than experience a small risk for a major gain?

It makes you start to wonder - which is the real disease, the phobia or the allergy? If a child has truly never experienced a reaction to peanut, yet the mom is so phobic that she won't even consider a food challenge in the event of a pass on component testing...which disorder is really the bigger issue for the family?

I know it's scary. We've been through at least a dozen challenges. My son has now failed three of them. It's not a pleasant day. But a curious thing has happened as a result: we no longer let the anxiety master us. A research study that examined food challenges and anxiety showed the same thing: pass or fail, the anxiety of the families involved was reduced after a food challenge.

How we think about these tests, talk about them, post about them on-line — all can add to or reduce our anxiety. We can talk ourselves out of even the smallest risk, and of course it's easier when others around us are also looking for ways to talk themselves out of risk.

Don't do it. If you have a child with a peanut allergy who's been diagnosed solely by test results, don't talk yourself out of the test because you dread the challenge. Don't live like this another day.

I read a crazy science fiction story as a child that left an indelible mark on me. The premise was that a ship had crash-landed on a planet with very high levels of radiation. The survivors of the crash all aged at a dramatic rate as soon as they landed, but still managed to reproduce. Their descendants also had shortened life spans - just 10 days from birth to death.

Those ten days were spend scrambling for resources; in particular, trying to obtain caves with better shielding so the tribe who won the battle could live lives a few hours longer. But three young warriors put their heads together and talked about how stupid and pointless it all was. They had heard a rumor that the ship that brought humans to the planet in the first place was still out there somewhere. Didn't it make sense to take a risk and strive to locate the ship, rather than dying in pointless skirmishes?

At the end of the story, they do find the ship and manage to get inside. It's shielded from the radiation. And, in that moment, they look at each other and realize that the rules have been completely reset and their lives have essentially started over.

There are so few of those types of opportunities in life. Component testing could be that kind of a moment for many families out there.

So many of us would give anything to be able to say "What do we do, now that he's not allergic?" It feels like mockery that others who really have that opportunity seem to be rejecting the chance.

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Re-Branding Food Allergies

So Monday's post got off into the absurd...probably because I got depressed while writing it. It started out as a serious post about polarizing issues and how they relate to food allergies, and veered into science fiction.

It's easier to talk about ray guns than solutions. I did do a little reading about de-polarizing hot topics, just to see what the experts say. All of them tend to start with the same point:

Acknowledge the concerns of the other
side and admit where they are right

Hmm....

It's pretty easy to sum up the thing that the disapproving, polarized 50% say about the food allergy community:

"Most of them make up allergies"

This is where things get hot, and where I really earn my bitch title because...for the most part...I agree.

I am frankly tired of making the rounds of the chat boards and seeing mothers say things like "my Susie gets a stomach ache and the sniffles every time she drinks milk. How do I get a ban at my school?" And I'm tired of reading the laundry lists of allergies diagnosed by test only, handed to the mother who eliminates milk, soy, peanut, eggs, wheat, corn and rice without a blink.

One interesting thing I've realized about my blog: because I don't make money, I really can say whatever I want. Too many allergy magazines and chat boards have an ulterior motive: separate the frightened from their dollars, either through readership or direct product purchases. That means they have no interest in telling people their children really don't have food allergies. The more the merrier, and often the moms who are the most over the top are also the most likely to want all the bells and whistles (the magazine subscription, the medication bracelet) that come with a real diagnosis. 

Which brings me to re-branding. Re-branding is a wonderful strategy, employed by businesses that get into hot water. (The Enron name has too much baggage? Just rename it AEI!).  

My proposal is that we simply re-brand food allergies. Too many people have glommed on to the term to the point that it's the object of ridicule. 

Where before I might have said "my son has food allergies", I need to start saying something different from now on, like:

"My son has an immune disorder" 

or 

"My son has protein-induced anaphylaxis"

or 

"My son has a hyperimmune reaction that
causes swelling and wheezing"

Any of those work for you? I like the last one a lot because it's not as easy to appropriate by the moms who really do make this stuff up. Swelling and wheezing are a lot harder to fake than sniffles and phantom stomach pain.

I understand why food allergies are polarizing. A lot of people are asking a great deal of others (food bans, restricted activities, etc.) without any proof that their allergy is serious...or even real. 

The Emperors are clearly out there.

I honestly think the only hope we have of ever being taken seriously depends on dealing with the 23% of the population who believe they have a food allergy but who DON'T. 

Perhaps component testing will finally provide a way to tell people they're not wearing any clothes. 

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Stand Back, Everyone - Food Allergies Are Being Polarized!

I should have put two and two together. I should have thought about the possibility. After all, there have been hints...and portents.

Polarization

It all makes perfect sense now. 


Surely you've heard of polarization! It's going on all around you! No? Think back in time...time...time...

Global warming. 20 years ago, it was just, well, science. We knew it was happening, that it was bad and that we'd have to change, or figure out a technical solution, or both.

*@ZAP!$%

Once that polarizing ray hit it, one's stand on global warming didn't have anything at all to do with the science. Instead, what you believed came down to what you wanted to believe.

George Zimmerman. *@ZAP!$% The debt ceiling. *@ZAP!$%  Gay marriage.  *@ZAP!$%


All polarized.


Do a search on the words "polarized issue" and you'll see what I mean. EVERYTHING is BEING polarized these days!

I never thought it could happen. I never thought a medical condition could fall under the bright beam. And yet...the signs are all there.

• A recent Thomson/Reuters health poll showed that 49% of households believe that food allergy fears are blown out of proportion. Populace divided 50/50%. Check.

• More information doesn't help, because both sides provide information. Truthiness. Check.

• The issue gets tied to other hot point issues, like food restrictions in schools or overprotective parenting. Controversy. Check. 

After the Mylan ad fiasco, there was a flurry of cries from our community for "More Education!" In post after post, many people said things like:

- They just don't understand that allergies can kill!
- We have to do a better job of educating the world at large! 
- Just show them the Sabrina Shannon video! 

It's too late. The polarizing rays have reached food allergies and there's no going back. Education only makes 'em meaner.

Save yourselves! 

*@ZAP!$%

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Where Are The Food-Allergy Dads?

It's Father's Day, a day I count my blessings.

When it first became apparent our son was allergic, my husband was (and is) a pillar of strength. He was the one who told me things would be o.k., that it looked worse than it was, that medicine was so much better now than when he was a kid.

My husband has asthma. Back in the  — well, I won't "out" him age-wise  — but a while ago, his parents had two choices:

• Drive him around in the car, head hanging out the window like a dog, until his lips looked less blue

• Take him to the hospital where they would put him in an oxygen tent

That was it. When my son was also diagnosed early on with asthma, my husband was amazed by the masks, nebulizers and meds that are now available and quickly developed the knowledge and awareness needed to keep our son out of the ER. 

When my son started school, it because apparent we were going to need someone there A LOT. My husband argued that he was the better choice. He knew what it meant to not be able to breathe, so he was less hyper than I was in a crisis. And, let's face it — being a male in a school of mostly women instructors and administrators is an advantage. So, he became the stay-at-home parent for many years while I worked.

Fast-forward 10 years. A decade of participation in support groups, chat boards, schools and camps, and he's the only dad I know who stayed home...and one of the few I've seen who is visibly active in his child's care.

Where are the rest of the food allergy dads?

I think one of the reasons food allergies is not taken as seriously by others as it should be is that it has become strongly associated with overprotective moms. (I noticed the other day on Slate that the article on food allergies was filed in the "Double X" section - women's issues.)

I get it, at least in part. Dads supposedly aren't good with illness. They don't want their kid focusing on illness (or, God forbid, veering into wimp territory). They don't like to talk about health issues. School and child-raising are traditionally more the mom's arena. 

But still...a little bit of Dad in the right place goes a long way. Shouldn't our husbands be attending the school meetings with us? Writing a letter to the editor now and then? Lobbying for better laws? 

Or is there really a sex divide where mothers see food allergies as life-threatening and dads mostly see them as a nuisance? 

I've always been thankful my marriage did not require negotiation when it came to allergies, but my perception is that many moms out there can't say the same.

I don't mean to rag on dads on Father's Day...but maybe the baseball diamond isn't the only plate husbands of FA kids need to be thinking about stepping up to.

Do you have thoughts on how food allergies affect marriages? Or why so few dads are visible in food allergy care, or advocacy? Leave me a comment!

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Food Allergy Incidents & Accidents, Hints and Allegations

A post on one of the chat boards today caught my eye. The writer was recounting a situation we've all been through: her son had experienced a possible allergic reaction after eating. The thing was...she didn't really know if it had been a reaction. He ate the food, he threw up 20 minutes later and life went on.

The writer in this particular case had avoided Burger King ever since "the incident", even though the ingredients of the food in question were safe and there were few chances of cross-contamination. Her child had eaten the food, gotten sick, and an association — whether true or not — was formed.

The post caught my eye because the experience was so familiar. To be blunt, my son was a barfer. The littlest thing could set him off. We were NEVER sure what was really going on. Was it a food reaction from cross contamination where the amount just wasn't enough to tip him over into a big reaction? Was his stomach just sensitive, perhaps as a result of whatever damaged his intestinal wall and caused his food allergies in the first place? (Just a theory...but an interesting one.) Was it perhaps a fever-less virus?

That process is called food aversion. It's one of the strongest responses humans have, thought to be a holdover from the days when something that made us sick was likely to be poisonous. We are trained to avoid like the plague (literally!) foods that make us puke.

The problem with this is that we can back ourselves into a corner with avoidance. To torture the Paul Simon lyric from which this post derives its name, we move from incident (the meal) to accident (the illness) to hint (was it a food allergy?) to allegation (it was! it definitely WAS! We'll never eat THERE again!).

As David Solot notes in his wonderful blog post about food aversion:

To make matters more confusing, sometimes aversions form for the wrong food. Imagine that on the way to work one morning you stop off for your traditional cup of coffee. Later that day, your coworkers all go out for Indian food. You’ve never had Indian food before, but you’re up for something new. You have a delicious meal and try lots of new items. But around 3pm, you start feeling queasy. It gets worse and worse, and by the evening you’re sick to your stomach and not able to hold anything down.

Your brain senses that you’ve been poisoned. Once again, it isn’t sure what did it, but it does remember a lot of strong spices and flavors that it never tasted before. To make sure you don’t poison yourself in the future, your brain decides “better safe than sorry,” and conditions you to feel sick any time you smell, taste or even think about Indian food.

The problem is, it turns out that there was nothing wrong with the Indian food - it was the creamer in your morning coffee that had gone bad! “No way,” says your brain, “we’ve had that coffee every day for a year. We know that it’s safe. It had to be that weird new food we ate.”

Sound familiar? Food allergies are nebulous beasts. When our child is suddenly ill, especially when it involves vomiting, we immediately link the incident to whatever novel food was last eaten. Sometimes, if nothing else will stand up as scapegoat, we'll even knock an old favorite off the safe list. Plus, we have the added reinforcement of knowing that the wrong foods have caused dire illness in the past, so we're primed by the very nature of food allergies to suspect everything going into their mouths as potential poison.

Think about it. How many times has your child been sick? How many (potentially innocent) foods could you, or have you, associated with that sickness? If you ask the food allergy community, they'll tell you to "go with your gut" (a saying no doubt derived from food aversion) and avoid it if it makes you anxious. But the list grows and grows...and the next thing you know, we're avoiding more than we're allowing.

To give you a personal example, when my son was little, he took a gymnastics class. After the class, I bought him Skittles from the candy machine. He had an immediate and serious asthma attack within minutes of eating them. Now, my son a) does not typically have exercise-induced asthma and, b) has reactions without hives.

The label was safe. I gave him an inhaler and shrugged it off, best I could. The next gymnastics class, same thing: exercise, Skittles, asthma. Yikes! I called the manufacturer - they told me no chance of peanut/milk/soy contamination, dedicated plant, no reports of other reactions.

My son has not had Skittles since. It's been 13 years.

Does this make sense? Probably not. But I learned to associate this candy with the fear of dealing with an asthma attack or, possibly, allergic reaction. The rational mother would trot out the probably-totally-innocent Skittles and do a challenge at some point. The human, fallible mother (that's me) is still phobic about those killer candies.

Each of us has episodes like this, and each of us develops a variety of avoidance behavior to deal with them. We all have a touch of "magical thinking" when it comes to allergies and it's natural to want to validate that experience.

While I have not posted on message boards and Facebook about the danger of Skittles, I could see how a scared mom could go that next step. Many moms even see it as their duty to warn others of the danger their kid experienced, even when the cause/effect chain is not absolutely clear. They want to validate their crazy (and I say that with love) by sharing it and hearing that others have experienced the same thing. And the world is big enough that someone, somewhere, will have also gotten sick at the same time they ate that food...

Does it help to know how the food aversion process works and how we FA moms are primed to fall for it because of the food = sickness connection? I don't know. Skittles are still not in our cupboard. But I'm hoping I'll get the guts to put them there sometime soon.

It's time to put them on trial, declare them guilty or innocent and finally close the case.


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Letting Go, Even Without Trust

Trust.

It's such a little word. But I came to realize this weekend that it makes all the difference in our interactions with others.

We dropped our son off for a week at a major state university, a week that's devoted to the study of politics and government, a week for which he qualified through a scholarship. We should have been all the things the other parents were - excited, wistful, proud beyond measure.

And we were. But they were all drowned out by fear.

I've done everything I can possibly do to make this week safe. I've read every label, met with food service, emphasized the pitfalls like the thoughtless pat of butter or shared cereal containers. I've talked with the camp director, health services, the adult counselors. I know they have the very best of intentions, and that they don't want anything to happen on their watch.

I also do not know if I can trust them.

You see, the food services lady seemed so very nice. She was expecting her own child. She had obviously dealt with special meal plans before. And yet...there were so many things she initially missed, so many people in that kitchen (and she could not be there every time, every meal). I have to trust them all. But I can't possibly KNOW them all.

I have to trust that the adult counselor will be available, should my son have a reaction. That he will believe my son, support my son, listen when I say he should just call 911 and not rely on the campus health service. I have to hope he will not freeze if my son is incapacitated, or just too shaky to give the injection.

I have to trust that the health director really does understand anaphylaxis and isn't just giving lip service to the situation, hoping to play it by ear if it really happens.

I have to trust that the other boys won't bully, won't slip peanut butter in, won't single him out so he gets distraught and perhaps takes a stupid risk.

And most of all, I have to trust my son. I've given him meal-by-meal instructions, talked through the scenarios. Yes, I've probably done too much hand-holding, but how do you not hold the hand of your child? The only way you can know that your child is ready for you to let him go is by letting him go.


I've let go. I just have to trust that his wings will open and that he can handle whatever comes.

I have to trust that he will come home again. What else can we do? The alternative of keeping them in the nest forever is so much worse.

I'll indulge in a little bit of mommy blubbering now. When my son was not yet school age, he came running into the house with tears in his eyes. "It's on the GROUND! They're hurt! You have to HELP!" He was so distraught that it was hard to make sense of it all, but eventually I figured out that a robin's nest had been blown out of the neighbor's tree during the previous night's storm.

I went to see what could be done. One little robin had been smashed by the fall and was clearly dead, but the other two were near the nest and quite vocal. I picked them up and put them in the nest. However, the next step was harder - the tree's lowest branch was a good 15 feet up, so they were clearly not going back into their old tree.

We puzzled through it over the next few hours. We tried chopping worms and feeding the little birds, but it wasn't terribly successful. After a while of this, I noticed that there was an adult bird who had been hovering around us for some time. "Let's try something," I told my son. We put the nest in a simple hanging planter and hung it from the lowest branch of the tree in our yard. Sure enough, the mother bird immediately started feeding the noisy babies as soon as we moved a distance away.

My son looked dubiously at the nest. "I don't think they're gonna be safe there, Mom. You need to find a way to keep them safe too." He was right. So...we got out the big ladder and the duct tape and we bound that planter into a V fork much higher up the tree. And sure enough, the mother again made the adjustment and fed those babies.

The babes were already well-feathered - it took only a week or 10 days before they fledged and were gone. What had seemed an insurmountable problem had just required a slightly less-orthodox approach.

I think I'll go mail my son a role of duct tape. It can't hurt, right?


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To the "Food Allergies Are Fake" Friend or Family Member

Hello:

You don't know me, but your friend or family member has asked that I write to you on their behalf.

I'm the Food Allergy Bitch. I say things about food allergies that other people might have difficulty saying directly. In this case, the thing that they're having trouble saying directly is that you're being an ass.

See, they don't want to cut you out of their life. They like you enough that they're giving things one more try, by handing you this letter. They want to co-exist peacefully. But you're making that difficult, which is why I'm writing to you.

We both know food allergies are not fake. Obviously, if you've paid any attention over the last little while, you know the child in question has a real health issue. You know they get very, very sick after eating even a little bit of the food to which they are allergic. You know that they carry rescue medications and can end up in the hospital, or even die.

However...you are still playing control games. Maybe you're doing a half-assed job of preparing foods, saving labels or accommodating your friend/family member when they bring alternate foods for their child. Maybe you refuse to put away the peanuts or other problematic foods. Maybe you make jokes and snide comments about wimpy kids, or "getting along in the real world." Maybe you've even hidden allergic ingredients in a food "just to see what would happen", or encouraged your own children to bully and exclude this child. You've added to the burden, again and again. 

Why are you doing this? 

Perhaps you feel that this adult is trying to control you through food allergies, by dictating what you can and can't serve in your own house. Or perhaps you have an issue with illness in general and equate it with weakness.

BUT...you're an adult. You should be able to rise above these things when a child is involved. So I ask you again...why are you doing this?

I know it's difficult. I live food allergies all day, every day. If you don't feel up to the challenge of preparing safe foods, I understand! Your friend or family member is not asking you to DO things for him or her. He/she is asking that you REFRAIN from doing certain things:

• Offering unsafe foods in situations where the risk is increased (foods left out with a small child, open allergens like a bowl of peanuts, insisting on having peanut satay on your menu, etc.)

• Teasing, bullying or making snide comments about the reality or severity of food allergies, especially directly to the child

• Talking behind their back about the issue

Really - that's all they need. They just need you to remain emotionally neutral and perhaps think a little bit in advance about the menu. Ask them what they need. You may be surprised at how easy it really is.

You're an adult. There's a child involved. Can you please suspend whatever it is that makes you see this as some kind of social affront or challenge and just support this child? Please?

Thank you for listening.

The Food Allergy Bitch


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