Friday, April 27, 2012


dah dah dah DIT dah dah...
dah dah dah dah dah dah dah DIT dah DAH...
Can you hear the music in your head? Can you see the red carpet? Can you picture the Food Allergy Luminaries getting out of their limos, walking down the red carpet to receive their little gold statuettes?

Yeah, me neither.

Just because food allergies don't get a lot of respect as a disease though is no reason for us not to award our stand-outs their own award! to present our nominees is...the FOOD ALLERGY BITCH! (Me.)

  • NAET! This amazing cure involves mysterious energy blockages! It's complicated and expensive! Best of all, it has shillers all over the internet recruiting people to the fold!
  • IgG Level Testing! They look like doctors! They feel like doctors! They test like doctors! If you love doctors and want a reason to needlessly limit foods in your/your child's diet, this is your kind of test!


When my sister told me this weekend that she had seen a naturopath and that the woman had asked her to hold a container of powdered milk in her hand and thereby diagnosed a milk allergy...the idea for the Bitchies was born.

The concept? Organ dysfunction is tied to muscle weakness. My favorite line from Quackwatch? "A few even perform "surrogate testing" in which the arm strength of a parent is tested to determine problems in a child held by the parent."

If you want to throw your money down the drain, you now have the best way to do it!

Let's move on. The next category is a competitive one.

  • The two moms at the Hamilton School (Glen Rock), New Jersey, who punched it out over food allergies

    "According to several parents and one district source, a recent argument between two Hamilton School parents, one dealing with an allergy situation, reportedly became physical, though no details were provided and no serious injuries were indicated."    
  • Curious (and compassionate!) Christian blogger

    "The interview with the father [of a child with food allergies] was the tip of the iceberg for me.  Watching him in his car, because he was to fat and lazy to get out of it and stand up, almost in tears because his daughter could not go to sleepovers was my decision point."


"I don't think my child should have to rinse her mouth out three times a day. Nine times out of 10, peanut butter is not coming out of her mouth," said Carrie. 

"If I had a daughter who had a problem, I would not ask everyone else to change their lives to fit my life," said Chris, whose wife was part of the protests. 

(There were also rumors that at least one parent in this school threatened to put peanut oil on their children's backpack.)

Teaching your kid compassion by putting a hate sign in their hand and asking them to picket against their classmate...that takes the award!

 We have just one more award for today.


  • Sarah Palin! Get the food out of schools? Heck, no! 

    "I had to shake it up a little bit because I heard there is a debate going on in Pennsylvania over whether most schools condemn sweets, cakes, cookies, that type of thing," Palin said. "I brought dozens and dozens of cookies to these students." 
  • Joel Stein! You're still a wienie, Joel. (If you didn't read his first article calling food allergy parents nuts, here you go.) I had hoped you had learned a little more compassion after your son was diagnosed with a nut allergy. But no...still gotta differentiate yourself from the rest of us crazies:

    " We're not banning nuts from our house, and we aren't going to send Laszlo to a nut-free school." 

    We'll look forward to seeing how your child does in a preschool filled with nut products and baby slobber.


 "For everyone calling me anorexic I have a gluten and lactose allergy. It's not about weight it's about health. Gluten is crapppp anyway." 

Thatagirl, Miley. Take all those impressionable teens and teach them that they can say they're allergic to any food they consider crappppp...and people will get off your back.

Did you diagnose your "allergies" with NAET? IgG? Maybe you held a baguette in your hand and measured your muscle strength?

Do you have someone who you think deserves a Bitchie? Let me know!

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Wednesday, April 25, 2012

BTDT, Got The FAHF-2 Food Allergy Clinical Trial T-Shirt!

Both...I think.
My son loves clever t-shirts. He got an opportunity to wear the one at left for a totally new outing this week: the FAHF-2 clinical trial.

As I mentioned in a post from last month, our family applied to the FAHF-2 clinical trial at Children's Memorial in Chicago. Getting in was actually a little iffy because my son's peanut numbers are so low. (Despite the low numbers, he had failed a peanut challenge last summer.) To participate, candidates had to be over the test threshold for SPT/RAST, have controlled asthma, be allergic to one of the allergens being studied (peanut, tree nuts, sesame, fish, or shellfish), be between the ages of 12 and 24 and not have a history of an allergy to corn or of a serious past reaction that required intubation or resuscitation.

Our initial visit included a thorough exam and consent paperwork for both me and him, since he's still underage. They took blood for a RAST (in our case, for both peanut and hazelnut to see which they preferred to challenge). They also did a skin prick test, a spirometric assessment of his lung function, an EKG, urinalysis and a general physical.

The next day, we got a call to say his peanut RAST was just over the 0.7ku/L cut-off. His SPT was also just over the line: 3.5mm, and it took until the very end of the time period to show up. Everyone shrugged and said perhaps we'd be celebrating him passing BOTH food challenges (the peanut and the placebo). The numbers were so low!

On the day of the food challenge, we got to the hospital at 8:30. He was allowed to eat up until 2 hours before the trial, as food in the stomach can help dampen reactions. However, he was not supposed to eat too close to the trial for the opposite reason - vomiting is common and they wanted food that was digested enough to not cause choking. Luckily, my teen-age wolf is able to eat anything at pretty much any time of day, so breakfast at 6:00 was no hardship.

The clinical research area is a very busy place! My son was only one of several test subjects there for the day. The area is divided into little clinical rooms that basically contain a treatment chair, some procedure carts and enough other chairs for the various people who come in and out. My son took the Chair of Honor and the nurses worked on getting an IV line in for him, a challenge given his strange veins. The doctor did another exam to make sure his health status had not changed from the initial exam, and asked him to blow into a peak flow meter several times so they could get his max. level. They took another set of blood from the IV line. Then we were ready to go.

The clinical trial manager brought into the room a big bin, filled with applesauce. There were two batches, labeled "A" and "B", divided into 9 doses. Should he finish them all, we were told, the total potential peanut dose was 2000mg, the equivalent of around 9 peanuts.

I did not get the dosing amounts during the trial, but they did tell us that the doses double and then double again, so this is about how many milligrams were probably in each dose*:

40 80
1 peanut = ~225-250mg

Because the trial was done "double blind", no one in the room knew which dose was going to contain peanut and which just applesauce. What we did know was that, if he did not react to the first batch, they would wait 2 hours to be sure and then go right into the second batch. No doubt every mother in the study whispered a prayer at the beginning of the day: "please let the first batch be placebo so this can all be over in one day!"

They started the dosing. Because of the delay in the reaction time on his SPT, the doses were spread out over a half hour, instead of the usual 10 minutes between. Around dose 4, my son started complaining of a tightening in his throat. Both the doctor and clinical trial nurse were with us and both asked for a number for the discomfort (2) and whether he wanted to continue. He did. We all really wanted to confirm that he was truly still allergic, given his numbers.

After dose 6, things started to get much worse. In the course of 20 minutes, his discomfort went from a 2 to a 7. The two clinicians looked uneasily at each other. They did a physical exam, listening for wheezing, and had my son blow again into the peak flow meter. His peak flow was down more than one hundred points. Additionally, I could see he was starting to panic.

"I'm calling it," said the doctor and the relief on the clinical study nurse's face was evident. They offered my son either liquid or IV push Benedryl (he took the liquid) and we all watched him like a hawk for the next half hour while it took effect. There were two other clinicians popping in at times now and asking how he was feeling. Finally, we all burst into laughter and the doctor said "we need to coordinate this better so we're not driving the poor guy crazy!" I laughed and said "hey, at least it's not just me bugging him for once!" The Benedryl kicked in quickly and everyone relaxed into the 4 hour observation period. They made sure we had our meds with us and sent us home around dinnertime. As fails go, it was as good as we could have hoped for.

The fail point? Just under 3 peanuts, according to the staff.

Monday, we girded our loins and drove back to the hospital for a repeat with Batch B. While we were all anticipating a fast, easy placebo day, there were no guarantees. Over the weekend, thoughts of psychosomatic reactions, sensitivity to something in the applesauce and EoE all went through my head. The good news is that it was indeed uneventful - he ate a bunch of applesauce, they waited two hours, and then they gave him his first dose of FAHF-2.

The pills are not small. They are a half-inch each in circumference, a little bigger than an M&M. Over the next six months, he will take THIRTY of them daily, 10 each with breakfast, lunch and dinner. Yesterday, I met with the school nurse to give her the permission slip, dosing schedule and medication. My son will need to stop by her office each day after lunch to take his mid-day dose. (For some strange reason, they object to teens popping 10 unlabeled pills at lunchtime in the cafeteria.)

From here on out, he will need to talk with the study coordinator once a week to report any issues. He will keep a journal to record medication dosage times and any illnesses or funny symptoms. Since these are natural substances that have a long track record in Eastern medicine, they do not expect side effects, but they are possible. We will return to the hospital for an exam and blood work every few months.

At the end, they will put him back through the two food challenges to see if anything has changed. If he is taking the placebo, they would expect to see a fail at about the same point as last time; if he's taking the real drug, we will have to see what happens. The ratio of real-to-placebo is 2:1, so we have good odds of getting the real drug.

I asked him after what the hardest part was and he replied, without hesitation, "discontinuing the antihistamine!" Apparently even the palms of his hands itched! However, that does put things in perspective. While he did not look forward to failing a food challenge, he's done it before. As fails go, this one was really very mild   no vomiting, no wheezing, moderate sense of doom, no major drop in blood pressure. We feel very lucky. However, it's also an important reminder: low numbers need to be tested once a history of allergy exists. It is very possible to be allergic with low numbers, just as it is possible to not have an allergy with high numbers.

The good news about this trial is that, if it works, it probably works for every allergen. As I mentioned, they did pull a RAST for hazelnut as well as peanut. Between January and this week, the number went from 3 to 12! My husband was very unhappy when he heard this. However, I reminded him that it's spring. It's possible that the spike in RAST is from a cross-reaction to birch pollen, not a real allergy to hazelnut. (My son has never reacted to hazelnut IRL.) The PPV for hazelnut is not well-determined, so it's hard to know if that 12 is important, but we will no doubt have to test this at some point down the road. (Hazelnut is a hassle because it's in so many coffees, so cross-contamination would be a serious issue.)

The expectation, as the trial continues, is that his RAST will go up....and then come down. No one knows why it works this way, but that seems to be the pattern, almost like the immune response has to be turned on before it can be tamped down.

If you are in the Midwest and interested in a trial, here's the link to the Children's Memorial research page. Our trial manager did mention that they are planning two more trials for 2012: one for the peanut patch used in Europe, and an oral tolerance study for wheat (not gluten intolerance/celiac, but true protein allergy).

*Based on the total of 2000mg and knowing he failed at Dose 6, which we were told was the equivalent of about 3 peanuts. 

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Friday, April 20, 2012

Converting Slacker Allergy Moms: Advocacy Edition

Who gets to be in the food allergy Big Tent? Any mom who has a child with a food allergy? Or only those moms who "follow the rules?"

Food-allergy advocacy almost always focuses only on the front end of the tent: getting new moms into the fold and compliant. As I pointed out in The Stress Lasagna, the accepted method to do this is to scare people silly. Talk about deaths    name the names. Scare them into carrying epinephrine and locking down their comfort zone.

After mothers have been through the mill for a while, the result can be an anxiety disorder for them and/or their child. Advocates aren't there to pick up the pieces   they've moved on to more newbies.

I obviously really dislike the scare tactics because they can have such devastating effects over time. But...I also think it's important to point out that, a good portion of the time, scare tactics do not get people into the tent in the first place.

The controversy over the new Mylan/Dey ad (see The Ethics of Converting Allergy Slacker Momsdemonstrates the limits of fear. We know a really big group of mothers take their kid to an ER, are given a talk/referral/prescription from the on-call doctor...and don't follow up. The comments on the regional advocacy sites over the last few days all seem to focus on one thing: WE NEED TO EDUCATE THESE MOTHERS!

Advocates, you're missing the point. These mothers are educated. They have seen the reaction. They have the prescription in hand. They are choosing to ignore it, despite having the information they need.

In the advertising world, we would call this customer resistance, or a barrier. And the one thing you don't do to overcome a barrier is throw good money after bad. If a message doesn't work, you try a different message.

I read a fascinating book yesterday called "The Tipping Point: How Little Things Can Make A Big Difference" by Malcolm Gladwell. In the book, he talks about how one college campus wanted to increase the percentage of students who received tetanus shots. The researcher did an experiment where he gave one set of students a "high fear" brochure with dramatic terms and color photography, and the other set a "low fear" brochure without the drama and pix. The results?
"...those who were given the high-fear booklet were more convinced of the dangers of tetanus, more convinced of the importance of shots, and were more likely to say that they intended to get inoculated. All of those differences evaporated, however, when Levanthal [the researcher] looked at how many of the students actually went and got a shot. One month after the experiments, almost none of the subjects - a mere 3 percent - had actually gone to the health center to get inoculated."
Sound familiar? Scared silly, said they would follow through...but didn't. In the vernacular of the book, the message wasn't "sticky."

The book goes on to talk about the the message and the concept of "stickiness." Stickiness says that often trivial things can tip an end user into action. In this particular case, the group with the highest vaccination rate was the one in which a map of the health center with the times it was open was given to the group. This was curious, because the students clearly already knew where the health center was. But...for whatever reason, it worked.
"If we didn't know about the Stickiness Factor, we probably would conclude that something was wrong with the way the booklet explained tetanus to the students. But the Stickiness Factor suggests...that the problem probably wasn't with the overall conception of the message at all, and that maybe all the campaign needed was a little gold box."
So, back to the Mylan/Dey commercial. The concept of the mother's convenience is the "gold box" of the commercial. ("Even with your peanut allergy and a cake made with who knows what. Because we're prepared - with EpiPen®.") It isn't about education. It's about that little tidbit that tips them into that next step.

When a commercial like this gets developed, there's generally a good bit of market research that happens first. Several concepts are developed, and each of those concepts has an emotional theme. But all those concepts generally tie back to one of two mega-emotions identified back in the Mad Men days of advertising: fear or greed.

Mylan's ad agency probably gathered as many moms with allergic children as they could get in a room. Some of them would have been the moms they were targeting - moms who knew their children were allergic but still didn't carry an Epi-Pen® injector. They would have showed them each concept and watched their response. Ideally, they would have done this in several cities, with different socioeconomic mixes. And then they would have picked the message that worked the best. They didn't even need to know why it worked  and it's often surprising which one does.

How does this relate to food allergy advocacy? Passion is great, but knowledge and effectiveness are more important. If food-allergy advocates really want to convert the slacker moms, they need to have more weapons in their arsenal than fear.

I don't really think people are mad at Mylan for uncovering the "gold box" message that works. I think the food allergy community is really mad at the slacker mothers. The ones who "get away with it", seemingly without consequences almost all of the time. Because the message they send to the world is:
Mothers who get all stressed out about their kids' allergies are overreacting. Look at me    my kid lives life without all these restrictions or prescriptions. 
We don't want to convert these women. We want to hate them.

But the negative messages that make our lives so hard are coming from them, whether stated or implied. Shooting the Mylan messenger isn't going to make these women go away.

Advocates - if you want the world at large to stop hearing this message, you're going to have to get these mothers into the Big Tent. And you're going to have to learn new circus tricks to do it   they're bored by the ones they've already seen.

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Wednesday, April 18, 2012

The Ethics of Converting Allergy Slacker Moms

There's a video that's moving like wildfire today through the various local advocacy groups. (Note: as of 4/20, it's been taken off Facebook/Youtube so I can no longer link to it here.) It was just released by Mylan Pharmaceutical (formerly Dey), the makers of the EpiPen® autoinjector. In case you can't hear the audio, here's the script:

Slacker Allergy Mom: "Excited for Max's birthday party? Should be pretty awesome."

Adorable Kid: "Yep"

Slacker Allergy Mom: "Even with your peanut allergy and a cake made with who knows what. Because we're prepared - with EpiPen®."

When I first saw this last night, I reacted in the way I've seen 99% of other posters react  with disgust. How dare this mother think she can just give her kid any random cake! Doesn't she understand that an EpiPen® is a BIG DEAL? An automatic hospital trip? Traumatic for the kid and stressful for the parent?

But then I did a little thinking...and a little research. I came across the Indeed profile for the brand manager for the EpiPen® injector*. He states the objective of the new ad series pretty clearly:
Repositioned the EpiPen professional campaign to better capitalize upon an expanded "at risk" indication.
For those of you who don't speak fluent Resume-eeze, this means they're trying to get moms who DON'T currently use an  EpiPen® injector to buy one by making them feel they need one.

So who are these Slacker Allergy Moms they're targeting? Based on their commercials so far, there seem to be two types:

1) Moms who are a little scared about allergies but just not scared enough to get that prescription filled. There are two commercials for these moms, called BUS and CAMPING. Both of these ads target situations where anxiety for mothers is already ratcheted up - that first day of school or camp. (Just to snark here for a minute...does anyone else think that blond, ringletted child and dark-haired mother are genetically improbable?) By associating the EpiPen® injector with that anxiety, they're hoping to tip these mothers over into GETTING THAT SCRIPT FILLED!

2) Moms who don't like the hassle of food allergies. Our SAM in this ad is socially cool. She's definitely not going to want the hassle of taking that kid to the ER after she gives him an EpiPen. So...this commercial is about her convenience. She probably already lets him eat that cake, as long as it passes the simple "does it have peanuts in it?" test, but now she doesn't have to feel guilty about it. Sure, we know he's going to need an ER afterward, but if that gets emphasized up-front she'll never buy that EpiPen® injector in the first place. Better to just bury it in the mumbled warnings all these commercials have to have and emphasize the convenience. It's a magic bullet!

So now that you know what they're doing...what's wrong with it? Is there really any difference between the strategy used to "convert" SAM #1 vs. SAM #2?

Before you decide, you need to understand the size of this under-penetrated market. Here's a great study that shows how parents in the real world deal with allergies. Of 14,677 patients in an HMO (gotta love HMOs for epidemiology!) who received an EpiPen® prescription, only 46% filled the prescription even once. Patients with a food allergy diagnosis and those under age 12 filled them at a higher rate, but the numbers are still nowhere close to 100%. Talk about opportunity to expand market share! the incensed advocates who are out there right now posting and fuming, I have this question: who does this commercial hurt?
  • Mylan makes more money.
  • FAAN's new CEO is a former marketeer for Dey -- they're gonna be fine with it.
  • Slacker Allergy Mom gets an  EpiPen® injector. It may be because she's been emotionally manipulated...she may not understand the need for that hospital trip...but she still orders one
The only people upset about this are the food allergy community members who already buy EpiPen® injectors, and we're not their target market. It may feel wrong to manipulate mothers into buying pens simply for their convenience, but keep in mind that our SAM #2 probably already lets him eat the cake

If scaring allergy moms into compliance is perfectly ethical, why is greeding allergy moms into compliance (their wish for convenience) suddenly not? Doesn't the end of them having an EpiPen® injector in hand justify the means of emotional manipulation? Don't we use emotional manipulation every day on our allergy chat boards for the same purpose? 

Leave me a comment if you're thrilled by the first example but horrified by the second. 

*Removing his name and profile link as of 4/24...don't want to Google-bomb the poor guy forever!

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Monday, April 16, 2012

All I'm Missing Is The Buggy

There are days when I think the closest thing to living with food allergies is living as a member of the Amish community.

Other people really just don't get us. The cooking. All the cooking. The obsessive search for recipes. The crazy avoidance rules. The eating out only on special occasions in a handful (if we're lucky) of trusted places.

When a friend of mine heard how much we cook and how little we eat out, she was horrified. "We order in EVERY NIGHT!" she exclaimed. Now, granted, she's at the extreme end of a very economically-privileged bubble. But the message wasn't lost on me: real Americans do not cook any more.

Our kids can seem overprotected and antisocial, even when they're not. My son does go along with his friends to the various restaurants in town at times, but there are times when he'll also stay home. "It makes them uncomfortable when I just watch them eat," he tells me. Sometimes he's just not up for ordering the Coke and trying not to stare.

I know what he means when it comes to social avoidance. There's no way to fly under the radar; showing up with unsolicited food for just your child always required explanation. If I do it without warning, people are offended. If I try to explain before the party, the host usually will want to try to make something safe...and try is the operative word. Years back, I used to attempt the crash course in kitchen cross-contamination, label reading, substitutions. Now I know better. There's just no way to explain it without opening up that wide cultural gap and I'm tired of people looking at me like I'm wearing a Quaker cap. Far easier to just beg off from social events that involve meals.

Our tribe is so very important in life. There's nothing worse than feeling isolated from, or even shunned by, those who should understand what we need. It's easy to start to think of ourselves as a group apart.

The problem is that we don't live in a community of individuals dealing with the same issues like the Amish do. Our food-allergy connections are mostly virtual ones. It's great to learn on a chat board that applesauce subs for egg, but that doesn't help with the grind of making those three meals and after-school snack every day. Plus, these ties are surprisingly tenuous. It's easy to chat on-line with someone for years and then, when you finally meet in person, get a completely difference sense for who they are. Face-to-face interaction trumps the internet every time.

Respite care is also a huge issue. For most of us, there are only a few people who really understand food allergies. What do we do when those people aren't available, especially in an emergency? Even in the everyday, food allergies take a toll. Date night can be a difficult goal when a trained, adult sitter is required. And those elusive weekends away? Unfathomable for the food-allergic parent. Yet emergency backups, date nights and weekends away are necessary if we are to keep our stress levels low and our marriages together.

If we identify too much with the "tribe" of food allergies, it's easy to see people who would genuinely help us as hostile outsiders. "It's hard to make them understand" can quickly become "they really don't want to understand or help."

I know I need to do a better job of asking for support. It takes a village to raise both a barn and a kid, as the sayings go. Time to hitch up my buggy and mingle among the English.

Wednesday, April 11, 2012

The Stress Lasagna

Balancing Food Allergy Stress With Mental Health
Sabrina. BJ. Nathan. Ammaria. Katelyn. If you immediately knew what those names have in common, this column is for you.

Food allergy deaths are never an easy topic, but one I feel obligated to write about. Since I started writing this column, I've re-immersed myself in the chat world of food allergies and I've been struck -- all over -- by how often we reference these children. (I was even in one conversation recently where one of these dead children was used with the intent to "win" an argument.)

I'm going to assume you've done your homework as a parent. You've met with a good allergist. You've done the testing required to truly identify your child's allergies.You have an Epi-Pen if appropriate, and a good action plan from your doctor on when you should use it. You've done everything you can to make the people and environment around your child as safe as possible.

Given all that, why are we still obsessively reading these stories? What is it we hope to learn?

The answer I've heard over the years is that parents want to know what went wrong so they won't make the same mistake. On the surface, that seems sensible. But, after a while, the reasons for these deaths become familiar. Cross-contamination. Manufacturing mistakes. A caregiver substitutes the wrong food. An Epi-Pen was not readily available. Food was eaten in a restaurant without checking for ingredients. Or perhaps ingredients were checked but the server/chef/manager gave inaccurate information.

And, of course, the ones that haunt us most are the ones where the parents did everything right. They recognized the reaction, treated it promptly and the child still died.

Stress from food allergies is like a lasagna. When we first start on our food allergy journey, the first few stories we hear are like the first few layers -- necessary, nutritious. But the stories just keep piling on, layer after layer after layer.  After the 20th layer, something's gotta give. It's just more than any human being could possibly digest.

And, oddly, there's a whole other list of children whose names we do not reference. Mercedes Mears died at school from an asthma attack. Aylin Rodriguez died when the car in which she was riding was broadsided. There are four thousand deaths a year from asthma. More than a million children worldwide are killed each year in car accidents. And yet, these children do not get added to our stress lasagna. Why is that?

Daniel Gilbert wrote an excellent book about risk entitled Stumbling on Happiness. The book posits that there are four characteristics crazy-making threats have in common:
  1. The perception that someone is doing something to us. Chance events (think global warming) are nowhere near as scary as events where someone intends us harm (think terrorism).
  2. The feeling that someone is acting immorally. Feelings of anger or disgrace kick us into high gear.
  3. The immediacy of the threat. The further away in time the bad thing may occur, the less we respond.
  4. How quickly change occurs. If a threat happens gradually (that funny on-and-off knocking in your car), it's taken less seriously than changes that happen suddenly (the THWAMP noise).  
If you think through these, it's easy to see why we might focus on food allergy deaths over asthma deaths (even though many of our children have asthma) or car accidents (even though our kids are in the car every day and at much higher risk of death there):
  • We perceive schools, friends and society as neglecting our children, and even sometimes intentionally wanting to harm them. 
  • We feel angry and societally-marginalized when our children are excluded. 
  • We are aware that food allergies can happen anywhere, at any time. 
  • When they do happen, the threat is rapid and dramatic. 
Because our brains work this way, it's difficult to resist reading the stories that re-emphasize our fears. We take precautions for the threats that seem the most dire. I am horrified at the thought of giving my kid a grocery store sample...yet I still (yes, I admit it) talk on my cell phone while I'm driving home. The more we read...the more we avoid...the more we obsess...the more layers we add to the lasagna, and the less attention we pay to equally-preventable dangers.

I've attended several FAAN conferences over the years. The highlight for my husband and I is always the parent lunch, the opportunity to meet other parents from around the country dealing with the same things we're dealing with. The conferences are somewhat self-selecting. Most of us are there because we're not casual parents when it comes to this stuff. We want to know everything we can know, prevent everything we can prevent.

I'm always surprised at how quickly the get-to-know-you banter is set aside and the big issues come out. And the "big issue" is never dealing with reactions - it's almost always anxiety. "My nine year old is afraid to eat; we had to put her in therapy," was one year's subject.

"There are days I feel like it would just be easier if we never left the house," said another mother. "It just seems like there are dangers everywhere."

By now, we know it all. We're doing it all. And yet, we're still piling on the stress, layer by layer by layer. We're still reading the stories.

Don't get me wrong - I think what the parents of children who have died from food allergy reactions do to spread awareness in our community is an amazing thing, and one that I'm not sure I could do if I were in their shoes. It's important work to reach out to the just-diagnosed and help them to learn. But there comes a time to say "I've learned what I can learn" from these situations.

I'm sure some will call that denial. But anxiety disorders can be just as debilitating as food allergies. And you don't see them coming because they don't involve others, don't make us angry, take time to develop and have no dramatic symptoms. It makes no sense to ignore the mental health threat to our community and focus only on the physical.

17 years is a LOT of lasagna. I'm putting down the fork.

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Thursday, April 5, 2012

It's Zealot To Deal With

Jesus, praying his disciples
will just mellow out already
It's Holy Week for much of the country. Perhaps that's why Jesus' name is so often on my tongue these days.

Or maybe it was my run-in with a food allergy zealot on Facebook.

Jesus had his issues with zealots. (He still does, if my Facebook newsfeed is any indication.) The term "zealot" was coined from the group of Jews in Jesus' time who supported overthrowing the Romans through military means. How did the Big Guy handle it? He made (at least two of) them disciples.

Once again, Jesus is a better person than me. The minute I get a whiff of even verbal violence from someone, I hit the "defriend" button.  (WWJD = Who Would Jesus Defriend? Or would Jesus just have 6 billion Facebook friends? But I digress...)

This week's Faceslapbook quote was: You're endangering your child's life just so you'll have an easier time managing his food allergy. It was in response to my post about total avoidance and how little sense total avoidance probably makes in light of all the oral tolerance and baked protein studies.

The poster in question was having none of it. There were multiple posts with ! and CAPS and every other manner of keyboard emphasis that could be applied. The message was clear - not only was I wrong, I was lazy, neglectful, even abusive. I was poisoning my child. All presumably because we are introducing baked milk, and therefore questioning whether it's still necessary to avoid things like medical-grade lactose.

But irony is fine.
I understand fear can make us zealots. There are times for all of us when the anxiety is all-consuming and it's seductively reassuring to believe our path is the only path. But that's still no excuse to EVER accuse each other of endangering our child's lives with our choices. I've seen too much of this over the years and it's where I draw the line. I do kick people out of my life at the point they accuse me of willfully trying to harm my child.

I'm hearing the little voice in my head saying judge not lest ye be judged. (I'm going to assume it's Jesus and not schizophrenia.) But it's very hard to listen when people are really crappy.

So here's my public appeal: if you're the parent of a child with allergies, or are allergic yourself, commit to dropping "you're lucky your kid hasn't died" from your arsenal of ways to win an internet argument. Consider it a food allergy Godwin's Law - if you go there, you've lost.

Don't make me resort to comparing you to a Nazi.

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Wednesday, April 4, 2012

Over The College Barrel

Six colleges. Six different types of campuses. Six different approaches to communal dining. And what did all of them have in common?

Cluenessness. Utter, complete cluelessness.

I had been feeling pretty good about college. Our high school counselor said "they deal with this stuff all the time, it will work out." The college admissions officers we've met at the various college fairs said "oh, yeah, food allergies are common! They make tons of accommodations!" The parents on College Confidential said "it's totally different than when we went to school and everyone ate the same thing."

This was the first time we had really sat down with food service at any of these schools. The first time we had tried to actually eat lunch during a tour. And guess what? CLUELESS!

It started with the admissions office calls. "Well," said the woman on the other end of the phone, "it looks like we're having barbeque chicken that day. Would that work for your son?"

I don't know. Would it? What are the ingredients? Did your kitchen staff use good cross-contamination protocols? Can you guarantee they followed the recipe, instead of throwing an extra dollop of butter in at the end to make it all look glossy? And, if he does have a reaction, is there anyone there to help? Will his cell phone even be able to access 911 there, assuming he's in good enough shape to dial?

I didn't say that, however. I'm infinitely aware that my son is not a catch when it comes to college admissions. He doesn't have a 4.0. He's not an athlete. There are no "hooks" to get him in the door, like us donating a library. They don't need one more reason not to admit him and the typical holistic approach to admissions at most colleges ensures that the kid with the mother who calls and badgers about food service is going to get a flag on his file.

So, we asked to talk or meet directly with food service on campus. Their responses were equally startling and horrifying.

"So your child has a gluten allergy, you say? We have a lot of gluten allergic kids on campus now." I gently remind him that gluten intolerance and food allergies are very different creatures, with only one having the possible outcome of quick death. "Oh, like a peanut allergy," was the response. "We only have a couple kids with those kind of allergies and they're all peanut. Those kids just have to learn what they can't eat."

When I told him about the MILK allergy, his eyes glazed over. "Well, I guess there's the salad bar." My husband went over to take a look. When he returned, he said "the fruit would be totally off limits all the time - there's yogurt everywhere. Even the lettuce looks like it may have sprinkle cheese in it." The three of us stared at each other.

"I guess we can go through the recipe books and see if there's going to be anything safe for him, but just about everything we make has milk in it," says the food service guy.

"You do understand that there are a TON of kids just like my son coming right behind him, right? You know that 1993-95 seems to be the start of this uptick in food allergies? That there are a couple kids in every kindergarten class now?"

"Yeah, we talked about it at a conference this year," he said. "We know it's coming. I guess I felt better because even the big schools don't know how they're going to deal with it yet. We have to figure it out, but we just don't know how to do it. How do you control the food to that degree when you're dealing with so many kids and so many allergies?"

One big campus we checked out on-line had this to say:

Because of the number of meals served and the number of items used each day, along with food product changes by our food vendor, it is nearly impossible to identify and label every allergen in the food that is being served.  There is also the possibility that manufacturers of the commercial foods we use could change the formulation at any time, without notice.  Customers concerned with food allergies need to be aware of this risk.  [Happy Shiny School] cannot assume any liability for adverse reactions to food consumed, or items one may come in contact with while eating at any University Dining facility or catered event.

In other words, we can't guarantee you're not going to die...but pay up for the food service plan anyway.

I'm lost. It feels like the start of kindergarten all over again except, unlike kindergarten, they don't have to take my kid. They don't have to learn. They don't have to accommodate. If I had any doubts that my child is moving into "the real world", this experience clarified things for me. The power is all on their side.

One thing I have learned is that there's no point — and even potentially great harm — in doing a thorough exploration of food service before we have an admittance in hand. I'm going to have to put all my anxieties in a little box for another year and just hope we can make the best of things wherever he gets admitted. There's always the community college option or commuting to a local school, although I really wanted the freshman dorm experience for him specifically because he's been so sheltered.

And who knows. Perhaps this clinical trial will succeed beyond our wildest dreams and all his allergies will be magically gone by the end of the summer.

One thing's for sure - it would give him a damn good topic for a college essay.

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Monday, April 2, 2012

Are We Nuts To Ask About Nuts?

I am back from a Spring Break involving 800 miles of driving and six college visits. So, of course, this post is about the local coffee shop.

It does make sense. After 10 days of 24-hour time with my children, love them though I do, I had earned my occasional-because-it's-too-expensive latte. I had even earned the cookie. I peered through the case, trying to figure out what the little white lumps were. White chocolate? Or nuts?

To be clear, I do not have a nut allergy, or any allergy. I'm just a picky eater. Plus, after years of worrying about cross-contamination and peanut-butter breath, I still hesitate to pick the peanut/nut choice. So I asked: "Do the cookies have nuts in them?"

The startled look on the face of the woman behind the counter said it all. "Well..." she started. "I used to say they were nut free because that's what our supplier told us. We have two kinds, and one of them is supposed to be nut free. But then, the other day, a mom came in and asked if the cookie had nuts. I said no. Her kid started eating it..."

What happened after that point in the story had clearly shaken her up. However, she didn't want to go into details so I couldn't tell if the boy had had a terrible reaction or if the mother had just reamed her out following a minor reaction. I reassured her that I did not have an allergy but she repeated two or three more times that she couldn't guarantee the cookies.

It was a bad cookie anyway. Waste of calories. But here's the thing - should we really have the expectation of nut-free cookies in this type of environment?

I don't know the answer to this. Because my son has multiple allergies, there has never been a bakery option for him (other than a very specialized Kosher bakery several towns away). But if there was a supposedly nut-free, milk-free, soy-free option baked in the same kitchen as other allergen-containing goodies, I can't imagine just handing it to my kid and saying "here you go - hope there's no cross-contamination."

Some parents of allergic kids I've met declare that their child has a "mild" allergy. I think they mean one of two things (and sometimes both):
  • Their child has a high threshold to allergens. In other words, it takes more than cross-contamination to trigger reactions in their children.
  • When their child does have reactions, the reactions tend to be limited to only hives.
Am I more conservative because my son has had reactions from cross-contamination and typically (now) has breathing difficulties during them? Or does the level of a parent's fear really not correspond to a child's reaction history?

Don't get me wrong - I think food service establishments could do a WHOLE LOT better with regard to these issues. (I did try to make a pitch for them to start carrying Divvies, but I could tell from her glazed-over look it wasn't going to happen.) However, label-less baked goods in the glass case are always going to be a risk.

Tort law in this area has not been kind to the allergic. The concept of "strict liability" - meaning that we can sue for injury without having to prove fault - is generally not upheld. Instead, liability requires proof of negligence.

It isn't negligent to have peanuts in a manufacturing environment as long as the manufacturer uses ordinary and reasonable care to prevent cross-contamination. It may not even be negligent to have "trace" amounts of an allergen in the food produced as long as a manufacturer can show an accepted process was followed and it would not be unexpected for the item to be in the food (i.e., nuts in a cookie). While the ADA was expanded in 2008 to provide a broader scope of protection for conditions like food allergies, there's been no test lawsuit brought to trial yet. When one finally is, there's no guarantee of success.  (This is a great article if you're interested in reading more on the topic.)

So, basically, the only absolute protection the allergic consumer has is to not eat the food. If, like my son, you're allergic to a common allergen like milk, you're on your own any time you eat out.

We all have to play the odds. I think it's reasonable to let my son have that cup of coffee or the cut fruit at the buffet. But clearly -- for us -- the bakery shop cookie is still on the NO side of the line.

I would love to hear from parents who consider their children's allergy mild and/or who DO eat the bakery shop cookie! If that's you, please leave me a comment!

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