Beans, Beans and More (or Less) Allergenic Beans!

We have a little good news this week: my son passed a home bean challenge for both pinto and cannellini (white) beans last night. Hooray!

At our last allergist visit, they ran the numbers on a number of varieties of beans and many were Class 0, with values like 0.68. My son's doctor thought it was reasonable to try these at home.

Going to stop for a moment and interject: DON'T DO THIS WITHOUT YOUR DOCTOR'S DIRECTION. A lot of things go into whether home challenges are a good idea for your child: how serious the allergen typically is, how far the hospital, how experienced the parents are with recognizing reactions. Many doctors are not comfortable with this at all. But, in our case, it makes sense to do some challenges at home because my son tests slightly allergic to dozens of foods.

He has avoided all beans since around age five, when he started developing new allergies. First it was tuna. Then cashews. Then (to our great surprise), he suddenly became allergic to garbonzo beans, something he had eaten very regularly through toddlerhood. Then it was sugar snap peas. Green beans. Baked beans (a particularly scary reaction that happened at his aunt's house, out of town, without medication in hand). The doctor actually thought it was possible he had something called "idiopathic anaphylaxis" at the time - reactions from unknown causes. However, after we kept a careful journal and did some testing and even in-office challenges, it became apparent he had developed a bean allergy.

At that point, we just started avoiding all beans and peas, which our doctor thought was reasonable. It turns out that 1 in 20 kids can have an allergy to a seed protein that's shared between bean species. If my son had that type of allergy, it was possible even more bean sensitivities would surface.

Fast forward to the start of high school. My son is a very healthy, adventurous eater and he wanted beans back in his diet, so we asked about home challenges at that time. The doctor said "sure."

We followed the same protocol as in the office: start with 1/4 of a bean and double the amount every 20 minutes until he reaches several Tbsps. of the food. The hardest part is that he has to discontinue his antihistamine for 7 days before.

We introduced kidney beans and my son had no problem during the challenge. However, the next day, he threw up after eating chili with kidney beans. A couple days following - exact same result. We all sighed and put it back on the list of foods to avoid.

This time, thankfully, things were different. Both pinto beans and cannillini beans went off without a hitch.

Did my son really outgrow beans this time? Might the FAHF-2 have helped? Or were we just avoiding two varieties that he could have tolerated all along? We don't know.

It's also early days with beans. We could have the same experience as several years back, where he succeeded in the challenge but really can't tolerate beans in his diet.

My husband had a gleam in his eye last night. He said to me for the first time "do you ever wonder if he's just not allergic to anything any more except peanut?" Yes, I wonder. It's time to do an open milk challenge and find out.

Even if he fails, even if the FAHF-2 had nothing to do with any of these successes, I'm still incredibly grateful. The clinical trial didn't just change his body; it changed how we all think about this stuff. We're just not as afraid. (I actually went to bed and SLEPT while his second set of bean challenges were going on!) We understand now that our fear was as big a burden as the allergens. And, we're pushing harder to work through this stuff, even when it's incredibly hard to find the time and emotional reserves to do it.

Yes, I'm grateful. Happy Thanksgiving to all of you celebrating this week!

Follow me on Facebook or Twitter  

Taking The High Road With Food Allergies (Sometimes)

I was getting all ready to write a post about how grateful I am. You know...one of those count-down-to-Thanksgiving posts where I list all the people or things that have helped me along the way.

And I am grateful. Really. Having virtual friends who have traveled this same food-allergy road is a wonderful gift. I can name so many times when my panic and frustration were alleviated by someone I've never even met in real life, but who took the time to give me a tip, or to console me.

But frankly, my lovely gratitude post went out the window when I received this email from a relative:

What can we bring to share? I have some ideas: Sweet Potatoes glazed with Chutney and Ginger, Green beans with Dijon and Caper sauce, Creamed Green beans with Dill sauce, or whatever you request.   I am aware of [FAB's son] dietary restriction.

My son is allergic to beans. We avoid all beans. Even green beans. The doctor was surprised by this, as green beans are the least allergenic of the bean family, but we even went through the exercise of an in-office food challenge just to prove to everyone he really had developed an allergy. 

That was 14 years ago. 

This particular relative has been at most Thanksgiving and Christmas dinners over those 14 years. She has brought countless problematic dishes. She has said things like "well, a little won't hurt" and "oh, I don't think it has anything he can't have!" My son has been told repeatedly that her dishes are completely off limits for him, no matter what she says.

Nothing says Thanksgiving
like vegetable tofu lasagna!

But here's the kicker: the emails goes on to talk about HER dietary restrictions! You see, she's found the God of Dietary Control over the last few years. She no longer eats animal products. She no longer eats carbs. SO...you guessed it...this email was not really about accommodating my son. This was a not-so-subtle hint about ME accommodating HER.  

Which I will. 

I always do. I have a sister with diabetes who has to count all carbs and watch all refined flour, rice and sugar. I have a brother who doesn't eat carbs at all. I have people who won't eat fish, lamb, mushrooms, mint. I accommodate them all. In many cases, I am only paying back their own care and kindness to my son. 

In this situation, I am clearly not paying back, since she's been so gleefully unaccommodating over the years. So...I will grit my teeth a little and pay it forward, in the hopes that some day, there will be a person out there like me who will accommodate my son even when it's annoying and difficult and she really has a million other things to do than make a vegetable, carb-free tofu lasagna.

Earlier this year at a wedding shower, another sister-in-law (I have a BIG family) who has never attempted to accommodate my son announced how proud she was that people complemented her on her wonderful Christmas cookies. She went on to say "So-and-So even said they were better than your mother's cookies!" I gently reminded her that Grandma's cookies did not contain real milk and butter, and haven't in the 18 years my son has had a milk allergy. It wasn't much of a contest. 

I never want these people to feel how awful it is to stare at a table full of food and to know you can only eat the one thing you brought yourself. To know it's your life and even some of your relatives don't love you enough to ask how to help you, how to include you.

Can I mention the wine when we
all say what we are grateful for?

I am trying to be grateful that I have learned the hard lesson that not everyone is always kind, and we shouldn't base our own life choices on what others do or don't do.

But can you really blame me if I just have a tiny thought about spreading lard through those tofu lasagna layers? 

Follow me on Facebook or Twitter  

Best Food Allergy Tweets/Posts From 2013 ACAAI Meeting

Sorry, guys...I've been very busy the last couple of weeks, but just over a week ago one of the largest allergy and asthma conferences, the annual American College of Allergy, Asthma and Immunology, was tweeting its brains out.

Here were the tweets and (virtual) presentations I thought were most interesting:

ACE inhibitors are often used to treat high blood pressure. I believe Lisinopril was the one specifically mentioned. This goes hand in hand with the idea that older patients, especially men, can see changes in the severity of their allergic reactions as they age.

Here's an answer on the question many of us asked about component testing. Just as with RAST, the number itself doesn't matter; just the positive result.

Gross! But yes, give your kids the bobber after the dog/ brother/ mailman licked it.

Conversely, tree-nut-allergic individuals have a 30% incidence of concurrent peanut allergy. 

So stop blaming yourselves, FA mommies! I've said this consistently - Mother Nature would not rig the game so babies needed to be given certain foods at certain times. Our existence on this earth has been too precarious to count on that type of consistency. 

Part two of STOP BLAMING YOURSELF! It doesn't matter what you ate. It doesn't matter what you fed your baby. We don't know how sensitization happens, but it doesn't seem to be through the food itself.

Other summaries and presentations you might like:

• Fast foods associated with an increased risk of allergy
• Climate change may be the culprit in allergy/asthma increase
• Defining allergy fact from fiction (this may be a helpful one to pass around with the turkey!)
• Egg allergy and the flu shot from Sloane Miller - get the word out! Everyone needs a flu shot!
• 13 things your allergist won't tell you 
• Myth vs. Fact: food allergies
• The high cost of food allergies
• Too few food allergies confirmed by oral challenge
• Great summary of literature and the specific food allergy research (thank you, as always, Ves Dimov!)

If you only read one, read that last one.

Happy Wednesday!

Follow me on Facebook or Twitter  

Magical Thinking and Food Allergies

So we got our FAHF-2 clinical trial email notification this week.

No, it's not the trial results. It was just a brief little note:

We are pleased to let you know that study participants have completed all study visits and we are now able to inform you of which treatment arm you or your child were part of (active or placebo).

[FAB's kid] was on active treatment medication.

At this time we can only provide you with your treatment assignment.  We are unable to share any information pertaining to other study participants.  Once the data is fully analyzed and peer reviewed, we will be able to share the overall study results. 

So...good. We weren't crazy.

The problem is that history is always written after the fact. While you're living your way through something, cause and effect are never clear. When people ask us whether the medication has made all the difference in my son's life, I have to just shrug and say "I don't know." There HAVE been some major changes since last winter:

• He's now eating all soy (including soy cheese) without restriction. 
• He's eating baked milk in everything without issue. (The only thing preventing us from introducing baked cheese is our own fear and busy schedules.) 
• While I know some of you really do not like the concept, he is eating "may contain" for peanut without any issues at all, which has significantly increased the number of processed foods available to him, especially chocolate. 
• He's started to expand his list of restaurants. While we're still not at the point (and probably will never be) where he can just eat something without asking about it, we no longer worry about cross-contamination.

What we don't know is whether we can attribute all that change to the medication. Is it possible that he had already outgrown soy, that he would have tolerated baked milk at this level without the medication, that "may contain" was always o.k. for him, and that we overreacted when it came to restaurants and cross-contamination?

Of course it's possible. Perhaps even likely. 

On the other had, we did see a measurable, really significant change in his tolerance to peanut. It is just as possible that the process that created that new tolerance also affected his response to these other allergens. But we'll really never know for sure, because the other allergens were not measured as part of the trial. 

It's so easy to see how food-allergy families can have such a diverse approach. The actual evidence we have for severity and tolerance may consist of a single reaction when our child was very young. In the years that follow, some people choose to believe their child's allergy has magically disappeared. Others may re-write it as a completely out-of-control, always life-threatening monster.  Our doctors know nothing. We know next-to-nothing. But, being human, we make up stories to fill the gap. 

Thanksgiving is just around the corner again. The spread of food always prompts the inevitable questions: 

How are his allergies? Did the study cure him? Can he eat what I brought now? Will he be able to take the medication again? Do you want him to do it if he can? Was it worth it? Do you think it worked? Will it work for others? 

Our family will be challenged to write the story that goes with this clinical trial. People really hate the very short story we've told up until now: we just don't know.

Everyone wants a definitive ending...even if we have to make it up. It's human nature. 

Follow me on Facebook or Twitter  

Inclusion and Food Allergies: How Far Is Too Far?

I enjoy hanging out on Reddit. It feels a little like going to a teenager zoo and I consider it an important study tool in the quest to understand my own teens. Yes, there are other people there who are 40+, but for the most part, Reddit is a collection of teens and 20-somethings with too much time on their hands and often a Lord of the Flies mentality.

So I was not all that surprised to run across this one:

The original poster went on to say:

I was the only one in the neighborhood giving out small goodie bags of bite size butterfingers, recesses peanut butter cups,starbursts and other assorted chocolates during halloween. This woman comes back to my house and got angry at me for giving her son candy with peanut butter in it. He ate some and he was having an allergic reaction. How the hell am i suppose to know what her son is allergic to. It wouldn't kill her to be a good parent and monitor what her kid eats instead of blaming me.

I read through some of the almost 2000 comments, trying to keep my anger in check. The oldie but goodies were all there:

"if touching a nut kills you, you’re supposed to die"

"I went to elementary school in the 1960's. I don't remember anyone having any issue at all with foods."

"Your niece might need to be homeschooled..."


Don't get me wrong: I think the mom who did this made a big mistake. I do understand; in the panic of the moment, I have done some crazy things, including calling a food manufacturer in the middle of a reaction to ask about the ingredients.  But suddenly, I had a small moment of insight of how that Roma family in Ireland might have felt after the police took away their child because she looked too blond to really belong to them. Just because one person in your community does something questionable, does that make it o.k. for the rest of society to pour out their hate on all members? Where does all this hate come from?

No, it's not o.k. that the mom blamed the neighbor for her child's reaction. But it's really not o.k. that so many people are willing to jump on the hate bandwagon as a result.

My Reddit comments to that effect were just drops in the ocean, and I suspect a larger response would only make us look crazy. What is the answer? How do we combat this prejudice without seeming over-reactive?

Follow me on Facebook or Twitter  

Discuss This Food Allergy Research At The Dinner Table Tonight!

FARE's name change ruined
my awesome pun headline

My mom and I went to a reunion this summer with her first cousins, ladies I had not met before. On the way to the restaurant, I was telling my mom about my summer research into intestinal flora and fecal transplant.

The poop had definitely been circulating in the news all summer, with the popular science journals joining in:

• Why Smokers Gain Weight When They Quit Smoking: Changes in Intestinal Flora
• Gut Infections Keep Mice Lean
• Colorectal Cancer May Be Triggered By Mouth Bacteria
• Bacterial Molecules May Prevent Inflammatory Bowel Disease
• Human Microbiome Livestream channel
• Some of My Best Friends Are Germs (New York Times - excellent summary)

We ran into the cousins in the parking lot and introductions and hugs were passed around. Just as I'm opening the door to the restaurant, my mom says "so FAB, tell my cousins what you were just telling me about transferring pooh into people's colons." 

Not the ideal way to be introduced. 

But you can see the difficulty. This is an astonishing new area of exploration in science...and just not great dinner conversation. I'm going to plunge ahead anyway, but be forewarned that you might want to put your snack down before reading further. 

Here's a cartoon to get us started:

From Three Word Phrase - very funny guy!

I first encountered fecal transplant in the literature as part of my day job. It has been extraordinarily successful in treating C. difficile, an often hospital-acquired infection that can ravage its victims. 

If simply transplanting poop from a healthy person into a compromised person can have such amazing results, then why not for other conditions that involve the gut, like food allergies? 

The science of all this is daunting. The human gut contains as many as 100 trillion separate types of bacteria, which is why I always giggle a bit when people talk about "probiotics" as a treatment for food allergies. Typical probiotic supplements contain only the bacteria we can grow outside the body:  usually one of only FIFTEEN strains.

It's a bit like throwing dye into the ocean in the hopes of coloring it red. 

Scientists are working on categorizing these bacteria. One of the more notable efforts going on right now is called the American Gut Project.  That project has already demonstrated that the gut bacteria of older vs. younger Americans, and of Americans vs. less developed countries, are vastly different. All of this comes together very well with the Hygiene Hypothesis II, which says that our decimation of gut bacteria through the use of antibacterials (including triclosan, which I've called the smoking gun for development of food allergies) is at the heart of the rise in intestinal and autoimmune disorders. Even the connection to pets and reduced food allergies makes sense. When we pet our dogs and cats and they, in turn, lick us, different types of bacteria are transferred into our bodies via the skin. Families with pets have different gut bacteria than families without.  

As with everything I read, I am extremely impatient to just cut to the chase. If fecal transplant has the potential to mitigate food allergies, where do we sign up? 

At the moment, fecal transplant is only officially being performed in teaching hospitals, and these facilities are starting to look over their shoulders. Right now, this is an unregulated treatment and the FDA seems to want in on the action. 

On the other hand, if you are adventurous, you can DIY with this helpful Youtube video:

So...all I need is a blender, a way to knock my child senseless so he doesn't know what's about to occur, and a donor! Preferably someone older, whose gut bacteria were colonized before the introduction of antibiotics and the advent of infant formula. Someone in excellent health with an appropriate body weight, who has used only limited antibiotics over the course of their life. 

Gonna see my father-in-law later today. Any suggestions on how to open that topic of conversation? 

Or...maybe I should hold out for the poop pill. At least I could still look my father-in-law in the eye, come Thanksgiving. 

Follow me on Facebook or Twitter  

Examples of Food Allergy Backlash

I've been pretty busy over the last couple of weeks. So, instead of writing a long blog post, I think I'll just leave a few things here that I've recently run across.

Stores are increasingly putting signs up about allergens. Not all of them are friendly.

This is from an album entitled "Guess What Mark Is Allergic To." His oh-so-helpful co-workers put these notes on food at work.


Someecards has a card for us now.

From Your Food Allergy Is Not My Problem.

Do you guys feel there's more or less of this kind of stuff happening now?


Follow me on Facebook or Twitter  

Seasonality and Food Allergies

Does it seem to anyone else that the odds of outgrowing a food allergy are a bit of a crap shoot?

The odds seem even, well, odder lately. For example, there's this recent study that seems to promote the idea that kids who strictly avoid are more likely to see resolution of their allergy. What does that even mean, strictly avoid? My son ate next to no processed foods, so I would imagine we were in the "strict avoidance" group. When he was RAST tested as part of the clinical trial, his score was so low he barely qualified. Yet he still reacted to peanut - and now his RAST has climbed back up.

Are peanut challenges as part of these trials a bad idea? If that's the case, though, how does that square with oral immunotherapy and SLIT? What about the kids who are going through the challenges and tolerating peanut? How do doctors ever know when to flip that magical switch from avoid to introduce?

Here's another study of people who outgrew, this time for tree nuts. Some of the kids had experienced severe past reactions, yet they still passed.

Then there was that weird SLIT study earlier in the year, where two of the kids in the placebo group spontaneously saw their peanut allergy resolve. I remember laughing when I got to that section of the write-up. You could tell that the researchers were a little miffed at having to explain the anomaly (and the explanation was basically "hey, we don't know, some kids just outgrow").

Those of us who have kicked theories around for years have hypothesized that there are different types of allergies: some that will be outgrown pretty much no matter what parents or kids do, and those that won't.

But what if there's something altogether different going on here?

I've been fascinated for years by the research that showed kids born in the winter months have a higher incidence of food allergy. This study showed an almost 20% increase in food allergies among fall/winter babies. This one showed an increase of 53%! One hypothesis for this is that when very young babies are exposed to heavy pollen loads, their immune system is more likely to learn to overreact. It's also become pretty clear that Vitamin D is somehow playing a role in this.

Honestly, though, I don't care about any of that. I just want to know how to get my kid to pass food challenges. I'm sure you do as well. So...here's my theory:

What if passing or failing a food challenge depends on the time of year the food challenge is given?

Think about it. If kids are predisposed to develop food allergies based on their month of birth, then perhaps those same factors are still in play when it comes to the waxing and waning of food allergies.

Based on all this, the best time to introduce a new food to the immune system would presumably be January or February. It would be especially effective if the child's Vitamin D level was high at the time, either through a good summer/fall spent playing outside or supplementation.

Our own personal experience does align with this. My son's final clinical trial challenges (the ones where he did well) occurred in October and January; earlier this year, he passed a soy challenge in February. Would he have passed if we had scheduled it in, say, May? Or would his already-overburdened immune system have gone crazy, re-sensitizing him to soy and undoing all our hard work of avoidance?

The uneven results of many of these clinical trials might also be at least partially explained by the periodicity of testing. It would be fascinating to see the results of the last several studies graphed against the months in which challenges occurred.

If your child has passed a food challenge, was it in the winter? If failed, was it in the spring or summer? Leave me a comment! 


Follow me on Facebook or Twitter  

"Can't You Take a (Food Allergy) Joke?"

Somewhere along the way in this 18 year journey, I lost my sense of humor.

I know this is not news to any of you. After all, the "bitch" is right there in the title.

Still, I'm reminded of the loss every time I look at the web statistics for this blog. The web stats include a list of search terms people use to find my articles. Know what one of my top search phrases is?

"Food allergies are fake."

I also get lots of hits from "food allergies overblown", "food allergies exaggerated", "crazy food allergy moms", "nutty food allergy parent" - you get the idea. Any time I look at my web statistics, I get a little reminder of how much hate is floating around out there for kids with this particular medical condition.

The articles that match those search terms though (like this one) mostly defend food allergy parents. It makes me wonder what the people who find my page that way do next. Do they read the article? Or do they wander off looking for another place on the web where they can hone their hate with other people who believe food allergies are imaginary/a pain in the ass (we know!)/the latest flavor of special snowflake-hood?

If you follow them down the rabbit-hole and challenge them on their hatred, eventually you get some version of "geez, can't you take a joke?" Well, no. Unfortunately, I've forgotten how. Explain to me again how funny it is that my son has to grapple with the logistics and fear that comes from a food allergy...and then, on top of it, has to pretend that the bullying doesn't matter to him.

There are days I think how did we as a community get to this place and I'm absolutely overwhelmed by the thought that it will never get better. Food allergies will be forever polarized and my son will always have to fear that one teacher/waitress/boss who buys into food allergies being fake and therefore is just a little (or a lot) less careful than he or she needs to be to keep my son safe.

Because that's the reality: unless he goes through life eating only food he himself prepares, he will need to trust people. When half the population doesn't believe in food allergies (to the point that people are taking the time to search for phrases like "I HATE FOOD ALLERGY KIDS"), how well-placed is that trust?

There was a great article in Slate a while back about the dangers of loneliness. A phrase jumped out at me:

In terms of human interactions...the key is in the quality, not the quantity of those people. We just need several on whom we can depend and who depend on us in return.

With food allergies, it's all about quantity. It's about every person who touches my son's food, or schedules an event involving food, or who makes a choice to support him (or not). It takes all of them — even the ones who are actively spending their time searching for others who hate food allergy kids as much as they do.

A little further down in the Slate article, I saw this:

When we are lonely, we lose impulse control and engage in what scientists call “social evasion.” We become less concerned with interactions and more concerned with self-preservation. Evolutionary psychologists speculate that loneliness triggers our basic, fight vs. flight survival mechanisms, and we stick to the periphery, away from people we do not know if we can trust.

Ouch. The food allergy periphery. Choosing never to eat out. Choosing to avoid social events that involve food. Choosing not to share information about a food allergy with others because of the fear of ridicule. 

I see the haters. Even when I don't look for them in my blog stats, they're there, in my peripheral vision. Where is the magical line between safety and loneliness? 

Follow me on Facebook or Twitter  

Mylan and Walgreens Team Up To "Remind" Us to Fill Our Epi-Pen Prescription

This is the Mylan slogan from their web site. I'm here to tell you that you should take them at their word. It's personal, all right.

We received a letter yesterday, ostensibly from Walgreens, as part of their "Walgreens Patient Support Program." The outside of the letter reads: PERSONAL AND CONFIDENTIAL TO BE OPENED BY ADDRESSEE ONLY. Address line is "Parent/Guardian of Sonof FAB."

I was concerned. Drug recall, perhaps? I open it, only to find:

You have received this letter because our records show you filled a prescription for EpiPen® (epinephrine) Auto-Injector 0.3 mg for your child and it may be near or past its expiration date. We would like to remind you that the more important step in reducing the risk of having a potentially life-threatening allergic reaction (anaphylaxis) is to avoid the things that they are allergic to. However, if your child experiences anaphylaxis, you or your child will need to act quickly by using an EpiPen Auto-Injector and seeking immediate medical attention.

COME ON! Really? First off, my child is EIGHTEEN so this is a breach of HIS confidentiality. His doctor no longer talks to us about his health - why in the world do Walgreens/Mylan have that right? Second, it is SO CREEPY to use our prescription history for marketing!

At the corner of creepy and coniving

I know what Walgreens will say...they never turned over our personal information to Mylan, so technically there was no HIPAA violation. But I feel violated. What's to stop Walgreens from sharing this same data file with anyone else they choose? Maybe a local chiropractor wants to buy the list and take a shot at curing my son's allergies? Perhaps the NSA would like it to verify who really has severe food allergies for Selective Service purposes?

There have been a few lawsuits in the last couple of years about this issue. However, plaintiffs have lost because they've been unable to demonstrate harm, or prove that they should benefit from the economic value of their own data.

I have no solution, but I do have to say that any lingering good will I had toward the EpiPen brand has evaporated. We do need to fill prescriptions, but I can certainly avoid Walgreens and at least spread my prescription purchases among multiple pharmacies to avoid leaving a comprehensive data trail.

But the reality is that big data is here, and there's very little we can do about it, other than bitch about it on-line. And chuckle a little bitterly, I suppose, at the irony of Mylan's new tagline:


Follow me on Facebook or Twitter  

The Gift

I watched a mom this morning
Standing on our street
Her hand already empty
Her child was in his seat

She waved away the bus, and watched
It bounce around the corner
Then instantly the smile changed
From happy mom to mourner

"I hope he couldn't tell" she said
"I'm afraid to let him go,
His teacher's just so young this year!
What could she really know?"

"My son has allergies, you see
He's never been away
And now there's snacks and crafts and lunch
Will he be o.k. each day?"

"But I try to give him this one gift:
I show him I'm delighted
And hide my fear so he can be
Just happy and excited."

I saw them later, walking home
Her face, calm and relaxed
She stopped to show the teacher's note
Her son had just brought back

"I'm sure today was hard for you,
To have to trust a stranger
To send your precious child away
To a place so filled with danger"

But the place is also filled with love
And we'll work to keep him safe
Thank you for your precious gift
Thank you for your faith

I glanced down at her son and asked
"So how did you like school?"
His face lit up and he said "Just great!"
"My teacher is so cool!"

And as he skipped off down the street
She added one last thought
"I felt like I was falling,
Then I read that - and was caught"

"I thought letting go meant losing
But I didn't understand
In the end, you get a circle
If you all hold out your hand"


Follow me on Facebook or Twitter  

New Food Allergy Action Plan from FARE...And It's...Confusing

I was very happy to see a notification in my Facebook feed that FARE has come out with a revised allergy action plan document. This one does a better job than the old form of pointing out severe symptoms. It also addresses instructions for all three of the major brands of epinephrine injector and gives important after-care instructions, the most crucial of which is that a person having a reaction should lay down and stay down.

But I do have to bitch a little about the form. Look at how the top of the form is laid out:

Do you see the issue? By putting the check boxes for when to give epinephrine inside of the symptoms boxes, it may confuse people into believing that epinephrine should be given immediately, even if the allergen was only likely eaten, for mild symptoms. What about if symptoms are severe but the allergen was only likely?

The better way to have done this would be to give each decision point its own area on a chart. All they would need to do is move the two check boxes ABOVE the severe/mild symptoms area, up in the same area where the asthma check box already is.

But my bigger-picture issue with the check boxes is that there are many more than just two decision points when it comes to deciding whether to give epinephrine. Does every allergen get treated the same? Every reaction history? How likely does the exposure need to be (especially for kids who don't get tell-tale hives)? What do you do if the kid has asthma and wheezing is the only symptom?

Here are the main three decision points (plus one I added for type of allergen) that I think the FARE form check boxes were trying to cover:

NOTE: This is NOT medical advice! Really! I am putting this out there for discussion purposes and I expect each of you to talk this through with your doctor. 

That said...I hope we can all agree that the first two lines are no-brainers. Personally, I think the third line should be a no-brainer, especially given the recent stories. But it's the next three lines where things get complicated. These are the situations each parent has to walk through with their own physician.

There is a balance here, and clearly many FA parents need to be strongly encouraged not to be afraid to use epinephrine. The drug is woefully under-utilized during reactions: in one study, only about 1 in 3 people received epinephrine before arriving in the ER. At the same time, none of us want to be over-reacting and giving epinephrine every time our kid sniffles and might have touched a ball on the playground that another child also touched. (If you haven't read my previous post on why we hesitate to give epinephrine, now might be a good time.)

Now, let's talk about the form.

The form check boxes definitely need to be far simpler than the matrix above. One of my big issues with the new FARE form is this business about whether the child has actually eaten the allergen. What does "likely eaten" even mean? I definitely don't think the nurse should be running around, quizzing the kids the child ate lunch with!

I also think the FARE group assumed that any allergy that justifies an epinephrine injector in the first place can probably be assumed to have the potential to cause a severe allergy. Finally, we want nurses to err on the side of administering epinephrine in an uncertain situation. Given all that, here is how I would have structured the top of that form:

This form takes the decision point about whether an allergen was consumed out of the equation. It also gives a place for a doctor to indicate the need to be more aggressive with treatment in specific situations where nurses typically take a wait-and-see approach. Finally (my pet peeve), it reminds people that hives are not always present during severe reactions.

FARE committee: if you're out there, I know you likely agonized over this form. I am being critical because I care. Because this is so very important. And because, as I said above, if I don't get it after 13 years of dealing with schools, others are also going to be confused.

And plus, you know me. I always have an opinion. 


Follow me on Facebook or Twitter