Could, Can, Will, Always: What's the Difference?

It's Summer Olympic time! So, consider these three young (theoretical) athletes:

• Tanya has been involved in gymnastics since the age of 2. At age 8, she participated in her first Junior National Championship, and at age 11, she won Juniors for the first time. Now, at age 14, she has already competed in two National Championships and placed 2^nd at the last one. 

• Ashley started gymnastics at age 10. While she has a great deal of potential and has been selected for her local club team, she has not yet been to a national meet.

• Jordan likes gymnastics a lot and her parents think she'd be good at it. However, she has no history at all with gymnastics. 

Tanya, Ashley and Jordan's parents have all asked that their daughters be allowed to audition for the U.S. Olympic Team. Where should the coaches focus their efforts? 

Pretty obvious, right? We all know that this evaluation should definitely not depend on what parents think. While important, potential without results is also not enough. When resources are going to be committed, it's most important to look at how a child actually performs.

So what does this have to do with food allergies, you ask? Well...I'm back to my theme from last week: polarization and why 49% of non-food-allergic people think food allergy fears are blown out of proportion. 

Frankly, I was hesitant to touch Part II of this topic, because I know it will piss people off. BUT...it's the heart of what's wrong with food allergy advocacy. And really...if I won't say it...who will?

As with our gymnasts above, there are different degrees of food allergy history. Consider our three children again:

• Tanya had her first reaction to peanuts as an infant and has been hospitalized several times from trace exposures. Two of those times, she required resuscitation and intubation. 

• Ashley has had a reaction to peanuts that involved hives, vomiting and a sensation of throat closing. She has never been hospitalized.

• Jordan has never had a reaction to peanuts. However, she was tested as a toddler and her test results showed sensitization to peanut protein, so her parents assume she has an allergy and that it's life-threatening.

Tanya, Ashley and Jordan's parents have all asked that peanuts be completely removed from their children's schools. Predictably, some parents react with hostility. And then the name calling begins. Parents who don't automatically support the demand for a food ban are labeled uncaring. Parents who ask for the ban are labeled overprotective.

How can two groups of people be so polarized? I think the difference comes down to the assessment of potential risk vs. demonstrated risk:

Food Allergy Parents Focus On
Potential Risk 

These three children are the same. It doesn't matter how small the risk. The possibility of anaphylaxis and death is there for all three kids; therefore, everyone should jump through
every hoop, every time.

Non-Food Allergy Parents Focus On Demonstrated Risk 

These three children are not the same. There needs to be at least some consideration of how likely an outcome this is before resources are committed and demands are made on others.

Doctors say reactions are entirely unpredictable and that a mild reaction history can suddenly become life-threatening. At the same time, among their colleagues they say only some reactions reach the most severe level (~15%) and that a history of severe reactions and/or asthma is important when considering risk. In other words, a mixed message that involves both potential and demonstrated risk.

Let me stop to make something clear here. I strongly believe ALL these parents need to take their child's allergy, or possible allergy, seriously and be prepared to deal with a severe reaction. Epinephrine is life-saving and we don't know who will have a severe reaction. 

However, being prepared to deal with a severe reaction, should it occur, and expecting it to occur are two different things. And, asking other people to change their own behavior (not sending peanut butter to school) based on the expectation that a severe allergic reaction will occur, without any other evidence, is where the equation becomes problematic for many people.

Food allergy parents live in a world of "could happen." We've gotten comfortable living here. I think it's easy to forget that the rest of the world doesn't live here all the time.

And, for some of us, could has become can; can has become will; will has become always. It's easy to see how the phrase:

Allergies are unpredictable and a
mild allergy could become more severe

morphs into

Allergies are unpredictable and a
mild allergy will (always) become more severe

It's such a small difference, but it's the difference between being seen by others as credible, and being seen by others as over-reactive.

The best advice I ever got came from the mom of a child older than my own. She said to me "when you find yourself getting upset and telling others what could happen, go back to talking about what did happen. Just recounting your actual experience will be enough to get what you really need."

Mostly, that's been true for us. How does it work for you?

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Six Degrees of Botanical Separation

Why do allergic parents avoid way more than they need to avoid? If you hang around any of the chat boards for any length of time, it can seem like traumatized moms are looking for more stuff to take out of their child's diet.

I think the impulse is understandable. Something bad happens on your watch -- you never want it to happen again. So, locking down the hatches (and locking up the cupboards) seems sensible. But then, over time, more and more foods can get added to the list until the child's diet is far more limited than it needs to be.

Are you doing any of the following? Time for a gut check...

Avoiding foods because of sound-alike names.

CocoNUT. NUTmeg. Water chestNUTS. 

Coconut, despite the scary name (and the unfathomable FALPCA designation as a tree nut) is a drupe, essentially a fruit with a big seed. Coconut allergy is very rare; in addition, while possible, cross-reactivity with the seed storage proteins in tree nuts is also very rare (only two reported cases). Doctors do not recommend avoiding coconut solely because a child has a peanut allergy. Coconut is an excellent source of fat for skinny allergy kids!

Nutmeg is a seed. Water chestnut is an aquatic, grasslike vegetable!

Avoiding based on botanical family. 

This is a wonderful resource I use all the time from the Calgary Allergy Network.  HOWEVER...what I hate to see is people using this list to avoid ALL the items in a botanical family, simply because their child is allergic to one item. 

Plants that have similar botanical characteristics do not necessarily share the same proteins at the molecular level. And, if they do, those proteins may have very subtle differences that can completely change how the body reacts to them. 

The body reacts to proteins based on two characteristics:

• The actual string of amino acids that makes up the protein. 
• The SHAPE the protein takes as a result of the bonds between the different amino acids.

To use an analogy, consider this blog post. It has words in it that are analogous to the sequence of amino acids in a protein. Words always contain the same letters in the same order. However, while writing my blog post, I also choose the order the words go in. The words are important, but the order I use is equally important and can make a huge difference in meaning. Consider these two sentences, which contain most of the same words:

The woman danced well for a little while.

While a little woman can dance, she cannot dance well.

Caraway seeds

In a similar way, how the parts of a protein are ordered can vastly change the shape, and therefore the "meaning" to the immune system.

More years ago than I'd like to admit, I worked in the field of chromotography, a science devoted to separating out the parts of a mixture into its components. One of the really difficult challenges in the field is separating out something called enantiomers. These molecules have exactly the same chemical structure; however, shape-wise, they are mirror images of each other.

Spearmint leaves

You would think these molecules would have very similar -- maybe even identical -- characteristics, wouldn't you? After all, the difference in their molecular make-up is essentially only in the way they twist at the end. But the reality is they're often not even remotely similar. For example, the taste in caraway seeds and spearmint leaves are both from the chemical carvone. The molecule that makes up both has exactly the same chemical structure. Go chew on both to see just how different they are as a result of that little twist!

Avoiding based on categorization or type. 

"I don't give my child any seeds or nuts" is a common way to cope with potential allergens. But does it make sense?

Tree nuts are the trickiest decision. Somewhere around half (some studies say 30%, some more) of kids with a peanut allergy may also have a concurrent tree nut allergy. Are the two related? In many cases, the answer seems to be yes.

As I discussed in the post about component testing, each allergen has several different "hot spots" that can cause an allergic reaction. Each of these hot spots has a different sequence of amino acids AND a different shape in the body. Some scientists do think that, in at least some cases, the body "sees" the three-dimensional shapes of peanut and tree nut proteins as similar enough to cause a cross-reaction. However, only some hot spots appear to have this potential and the science is not well-enough explored to fully confirm this allergic pathway yet.

So how do you know if your child is allergic to a part of the peanut that might have a similar-shaped protein as another tree nut? You don't. It comes down to testing: clinical and challenge. (Here's what Sampson and Sicherer say on the topic.)

We pushed hard for this testing, as our son's food was so very limited. He showed some sensitivity to many nuts (Class 1 or even a little higher in some cases). However, after challenge testing for all of them, he now eats ALL tree nuts except hazelnuts (and we're still hoping that one is a pollen allergy). He had mild reactions to cashews that he outgrew. We buy our nuts whole, from a peanut-free source if possible, and wash them thoroughly before use. Nuts have become a wonderful source of protein in our house. 

I don't expect many other peanut parents to travel the same path, but I do think it's important to acknowledge that, for as many as half of you, it is possible. And, since keeping foods in a child's diet may have a protective effect with regard to developing new allergies, we try to use nuts frequently in our cooking. 

There are "clusters" of allergens that seem to travel together, probably the result of homologous proteins or some cross-reactive recognition at the molecular level. However, the bottom line is that the science of molecular categorization of these clusters is in the very early stages. (If you're really curious, this article about protein family classification is interesting bedtime reading.) We know that:

• Many kids with milk allergy also end up with egg and peanut 
• Peanut and sesame can go together, and reactions can be very severe when allergies to both are present
• People allergic to latex can have cross-reactivity to kiwi, banana, hazelnut or other fruits
• 1 in 20 people who have an allergy to one legume are allergic to others in the family  
• Many milk-allergic children (studies say about 1 in 10) will have a concurrent allergy to soy.

Some day, your child's molecular allergy fingerprint may help to identify which other foods are a risk. Until then, it's important to recognize that every child is different and there are no certainties when it comes to cross-reactivity between allergens.

Does your child have an interesting "cluster" of allergies? Post in the comments!

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Show Me Your Allergy Papers!!

I listened in to the UKnow peanut test webinar at lunch today. (They have promised to post the presentation on their site later in the week.)

The information was mostly expected, but still very good. They had the research head of Thermo Fisher (the parent company) as well as a clinician who had implemented the testing in her practice with a great deal of success.

However, what struck me most were the questions once the initial presentation was over. The very first question asked was regarding Ara h 6. The inquirer didn't come right out and say he had heard the test wasn't reliable...but the question was clearly underneath. A couple questions later, we heard:

If my child is negative to Ara h 2 today, that doesn't mean he won't become allergic down the road, right? There's no guarantee?

The doctor with the clinical practice laughed a little when she heard the question. And then, she went through the reassurance tap dance that I'm sure she's done hundreds of times in her practice: yes, allergies can develop at any time but a passed peanut challenge generally means the child can eat peanuts. The test indicates the challenge will be low-risk. They'll take every precaution. They've never had a serious problem.

I was struck by the wide gulf between what the doctors and scientists were trying to communicate, and what the parents on the other end were willing and able to hear. As I've talked about in other blog posts, some parents do not really want to know if their child is allergic. Perhaps precautions are too ingrained. Perhaps "food allergies" have become a convenient repository for other anxieties. Perhaps no guarantee will ever be enough of a guarantee.

While I listened to rest of the presentation, I thought about this gulf between science and emotion. It also led to thoughts of the gulf between a provable allergy (science) and what we ask from society (emotion) as a result of an allergy. I thought about the social ramifications of this test. 

Right now, the test is being marketed to parents who presumably want it. But if they really don't want to know...but still want that 504 with all its jump-through hoops...who else might have an investment in the outcome of this test?

Schools. Lawyers. Even other parents who are angry about peanut-free-only treats.

Think about it. A couple of years from now, the "my child needs a 504" conversation may be countered with "have you pursued component testing?"

I have mixed feelings about all of this. There are some allergic reactions that will probably happen as a result of atypical molecular allergy patterns. That's unfortunate. On the other hand, those children will firmly know they have an allergy.

There's a whole other side of me that says "YES! Test EVERYBODY!" For too long, advocacy and safety efforts for food allergies have languished because so many people believe they have a food allergy when they don't. If there really is a way to become a card-carrying IgE-mediated, truly-at-risk allergic citizen, shouldn't those of us with allergic children support the effort?

No offense, but I would like nothing better than to say good-bye to this blog and all of you as the result of my child passing a test like this. Unfortunately, one of the first questions I asked was "if a child has had an in-office challenge and failed, is there any point to the test?" The answer was "no, no clinical reason." However, if proving his allergy and thereby having people take it more seriously was a social outcome, I would spend the money in a heartbeat. 

I don't know how this will all play out. I don't know much about 504 law and whether schools can require medical test results in exchange for accommodations. But my guess is, even if they cannot legally do so, there will be social pressures to pony up results before other parents are willing to place restriction on their own children. 

I am uncomfortably aware that the "show me your papers" portion of the Arizona immigration law was deemed constitutional by the Supreme Court this week. Can "show me your allergy papers" really be that far behind? 


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Candycankillyouland: The Food Allergy Game

          

It's time to play CANDYCANKILLYOULAND: the (potentially) heart-stopping game for 1 out of 13 kids and their families!!!!!!!

Just choose a piece...doesn't matter which. They're all the same...although doctors all seem to have their favorites.

Ready to get started? Roll the genetic dice and take your first turn.

Oh, too bad! Tough first turn! Your kid's allergic and you're stuck here.

Well, gotta move on anyway.

Decide whether to make your house allergen free! But avoid the Swamp of Resentful Siblings...

Princess Frosting is having a party at the palace! But...it's Totally Toffee Tastic-themed... Go back 2 social squares

Wow! A mom who didn't turn white when you explained how to use the Epi-Pen! Stay on this square for a full 2-hour playdate!

OH NO! Reaction! Maybe...he's vomiting...but where are the hives? Did he EAT anything bad? Should you wait? Give Benedryl? Give an Epi-Pen? Call the doctor?
Make a choice...you only get 10 minutes on this square.

Enter the Gum Drop Preschool Forest. Children who land on this square must eat every. five. minutes or they turn to pixie dust

Choose your path: make a big deal or a little deal out of allergies? Too far and you'll reach Helicopter Mountain. Not far enough and it's the Allergy-Must-Be-Mild Mirage

Oops! Your school administrator likes to say "back in my day we didn't have allergies" and "every child can't have special treatment." Wait on this square every day with your heart in your mouth until the school day is over

"Why can't I move ahead with the other kids, Mom?" You've become the Ogre! Make your child skip all candy squares at school, Scouts, sports half-time and parties!

Choose your path again! Will it be Eating Disorderland for your little one? Crushing Anxiety City for you? No way to know which path is best/So take a turn and and make a guess!

The Room Committee decided on a safe-food Valentine's! Hooray! Stay on this square only if you can do so without crying openly in front of them.

You're starting to figure out the best path. Move ahead 3 squares

Grandma Nutt doesn't believe in allergies! BAD REACTION!! Back to Square One


These games can go on forever, can't they? And they're never any fun.

We play them, though, because we love our kids. We play, even when we know it's not a game.

What choice do we have?

Your turn.


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Brief FAHF-2 Update

A couple of you have asked about the progress with my son's FAHF-2 clinical trial. I haven't written about it because there just isn't a lot to write!

The pills smell like a combination of chocolate
and tobacco. They come in HUGE bottles that
get refilled each time we go back.

He started the meds after our challenge testing in mid-April. We've been back for a six week check-up that was uneventful. Other than that, the biggest challenge is simply getting him to remember to take the meds and take them fairly consistently. They're supposed to be done at the same time each day.

Any of you who have teen-age children can understand how difficult the "same time" requirement is, since waking time on a school or activity day might be 6:30, and waking time on a NON school or activity day is more like...1:00 in the afternoon. So, we've stretched the rules a bit (with their knowledge) and just ensured that he eats three times and takes the meds three times, at least 4 hours apart. Apparently this is an issue with just about all the trial participants... except the lone girl, who I'm sure is organized, prompt and responsible.

I've seen on my blog stats several searches for "how can I get FAHF-2." The answer is: you can't, at least not through Western medicine. I think they are hand-making these for the trial participants. They did mention that they've reformulated the drug now so future participants will not need to take as many pills, which is excellent. This would not work long-term for anyone. The constant reminders are a major source of stress in our house.

I have had trouble impressing on my son that this is a bit like Willy Wonka's Chocolate Tour. If you break the rules, you're out, and the prize is possibly all at the end. If he's taking placebo, we want to make sure we follow the rules and stay in so we can get the real drug! No missing doses!


They still need two participants in the Chicago trial before they can "close it out." What that means to us is that, until everyone finishes the trial, NO ONE finds out who was taking placebo. And, if we do have placebo, we will not get the real drug until everyone completes.

Of course, there's one other way we could find out: by a difference in the challenge test dose tolerance.

In September, we'll go back and do the whole testing rigamarole over again. Ten days off the antihistamines, followed by two food challenges at least three days apart. I know my son is dreading it. (Not the challenges! the being off antihistamines!) If he gets to Dose 6 again, then either we had placebo or the medicine just didn't work. If he DOES get further, they will continue the medicine another two months, into November, and we'll go through yet a THIRD round of challenges in the hope he'll get even further. 

The first couple of weeks he was taking the meds, he was very sniffly and congested. Not a cold...no coughing...just an odd throat clearing and nasal congestion. Was it related? The trial coordinator just said "hmm". She did say none of the other kids were reporting that as a symptom, and that the "symptoms" seemed to be all over the board. Of course, everyone is looking for symptoms, so it's possible nothing is truly related to the medication, even for the kids taking the real McCoy.

If you are at all interested in participating in the Chicago trial, PLEASE contact them! We really want to see it get closed out so we can find out at the end what all the work was for. Also, they mentioned at the last visit that they will be adding a trial shortly for the peanut patch that will include component testing for all participants. The peanut patch trial will take kids 6 and older and is part of a network of trials throughout the US. (This patch has already been tested extensively in Europe with very good results - about the same levels of tolerance as the oral allergy trials.) Later in the year, they'll be looking for participants for a wheat protein trial.

Yes, it means a food challenge...but who knows? You might actually get good news from that challenge. After all, we heard through the grapevine that two of the kids tested for the FAHF-2 trial passed the initial challenge. (Wasserman's assessment at AAAAI this year was that 30% of kids in the initial OIT trials did not really have a peanut allergy...so it's obvious why they've added challenges to most subsequent trials.)

If you have an older child and are starting to think about the dangers from almost-inevitable exposures, I hope you'll consider getting involved. The risk calculation changes a lot as they age. That 5-peanut buffer that didn't seem like such a big deal when they were little and we could control all their food becomes much more important as they morph into risk-taking semi-adults. More than three quarters of the kids in the OIT studies showed an improvement in quality of life measurements. That alone makes a trial worth considering!


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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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