Anyone who knows Lucy knows that she's precocious when it comes to science, particularly anatomy, and specifically, food allergies. The girl knows her stuff. She knows that white blood cells are really called leukocytes. She knows what auto-immune disorders, mast cells, histamine, immunotherapy, cross-contamination and anaphylaxis are and can talk about them intelligently. She understands the severity of her allergies, and it is a huge relief to us that she takes them so seriously.
When we go to Red Robin, the one safe restaurant we've found (where she gets raw broccoli, raw carrot sticks and a plain microwaved chicken), she always tells the server her allergies and asks to make sure there's no cross contamination. And 100% of the time, the server giggles, and smiles and says something like, "Wow! She is so cute!"
When we're at birthday parties and the host/parent tries to serve Lucy, she politely says, "no thank you, I have food allergies. I brought my own safe food." And 100% of the time, the host/parent giggles, and smiles and says something like, "Wow! She is so cute!"
When we met with Lucy's 504 team before school started, Lucy was with me. When the meeting was over, Lucy said, "Having me in your classroom is a big responsibility." And, one of the adults in the room, a member of her 504 team, a team put in place to take her allergies seriously, giggled and smiled and said something like, "Wow! She is so cute!"
When a child says, "please take me seriously," "please listen," "please don't kill me," never, ever giggle or smile or make comments highlighting the child's aesthetically-appealing diminutive appearance. Also, as a rule of thumb, if anyone is choking, or being mugged or having a heart attack or merely asking you if there is artificial sweetener because of their diabetes, never, ever laugh at them and call them cute.
Lucy knows that going out into the world can be scary and that she's constantly putting her life in the hands of strangers who do not understand the severity of her allergies. Yet, she's so incredibly brave. I am proud and amazed at how she takes complete ownership of her own advocacy.
She second guesses everyone, including me: "Did you read the label?" "Can you read it again?" "Did you check the ingredients?" "Are you sure this is safe?" "Have you called the manufacturer?" "Does this contain spices?" "Are you sure this is soy-based and not dairy?"
None of those questions is cute or adorable. They are the earnest questions of a bold and serious person speaking up and speaking out. They are the words of a fearless human being, taking charge of her destiny and not giving into fear. They are the pleas of a five-year-old who understands the fragility of her own mortality and is begging you not to quash her awareness and preparedness with your carelessness.
She's not adorable; she is a bad ass.
"Though she be but little, she is fierce!"
- William Shakespeare, A Midsummer Night's Dream
Please donate today.
Monday, August 26, 2013
The FDA and Me. Or How I Tried to Bring Down Heinz by Learning Their Top Secret Recipe.
The FDA is my friend and foe. It's a love hate relationship.
On one hand, I love them...
In 2011, Lucy's lips swelled up to several times their normal size after a salad dressing touched her mouth. I just knew this was because the vegan Caesar dressing had been cross-contaminated with eggs or milk. I called the FDA at 8pm. They called me back at 10pm. What? Seriously? The nice man on the line said, "we care very much about food safety, in particular when it comes to kids." Nice work, guys. The next morning, an FDA case worker was at my house, interviewing me at length and taking samples. I was shocked. I felt comforted. My government is awesome!
Oops. My bad.
Turns out, it was all for nothing. No cross-contamination. Lucy had developed a mustard allergy and the dressing had mustard in it five different ways. My bad. Thanks anyway, feds. I am impressed.
FALCPA
In 2006, because of FAAN's relentless legislative advocacy work, one of the most important pieces of food allergy legislation was passed. This act, known as The Food Allergen Labeling Consumer Protection Act, or FALCPA requires that packaged food labels have ingredients of the eight most allergenic foods declared even if they are spices of flavorings. These eight foods are: peanuts, tree nuts, milk, eggs, fish, shellfish, soy and wheat. Lucy is allergic to the first four, and outgrew a soy allergy at 2-years-old.
This is tremendously helpful. Pre-2006, any of those ingredients could be hiding anywhere and there was no way to know if a pre-packaged food was safe or not. Also, any of those ingredients could have been listed as anything. Milk, for example, could have been labeled as, "casein," "whey," "lactoglobulin" or any of the other scores of milk proteins, enzymes or lipids. In thos dark olden days, you needed a PhD and faith in manufacturers to get through a trip to the grocery store. Except, that you still do.
On the other hand, I hate them...
FALCPA is very limited in scope. It does NOT cover the following. In parenthesis, I've put common allergens found in these products. How do I know about these? Personal experience, research and phone calls. Those parenthesis represent reactions that could have prevented if only labels were accurate.
It also doesn't cover foods that are very similar to the eight foods that are required to be labelled. For example, goat and sheep milk have 96% of the same proteins as cow's milk and are just as allergenic. A product could use another mammalian milk and not have to label it.
"This product manufactured on equipment shared with anthrax"
You've probably seen that some foods have statements like, "May contain peanuts." Or, "manufactured on equipment with food containing eggs." Those statements are completely voluntary. If a fork was used to stir cyanide soup and then used to serve your mashed potatoes, I'm guessing you'd want to know that. I saw a Halloween Snickers bar that said, "Contains peanuts." Following that logic, one might assume that it did not also contain any of the other top eight food allergens. Except that it did contain milk and wheat. Tricky.
The trickiest part is that foods are made on the same equipment as other foods. Bits and pieces of those foods stick and get co-mingled. This has happened in my own kitchen. Mixers, blenders, spoons, frying pans - food residue sticks. Lucy threw up once after taking a wooden spoon out of my clean dishwasher. She immediately vomited. The spoon had been used to stir cheese sauce the night before.
There have been several studies on this phenomenon with peanuts. In candies and baked goods where peanuts were not an ingredient, but where the foods were made on equipment shared with peanut-containing foods, up to 1.5 peanuts were found in the "peanut-free" foods. Lucy experienced anaphylaxis at 1/60th of a peanut. So not requiring "shared equipment" labels on foods is a major failure. We do buy some foods that are made on shared euipment because the manufacturers follow really tight guidelines about cleaning the lines between productions. Some brands, like Tofutti ice cream sandwiches are recalled nearly every year due to cross contamination,
And then there's mustard and roach poop...
Mustard, et al. In other words, the 80 bizillion foods that are not the eight foods required to be labeled. The manufacturers have (and exercise) their legal right not to tell you what is in their patented, propritary spice blend of death. And, since these other ingredients do not have to be labelled, a recipe can change at any time without consumers knowing. Just because a food was safe in July doesn't mean that a new box of it purchased in August has the same ingredients. Worried about GMOs, gluten, MSG, HFCS, roach droppings? Too bad, consumers.
Hey, thanks, Jews.
I'd be remiss if I didn't give a shout out. Where the FDA has failed me, Jewish dietary law has not. Foods labelled as Parve are safe for Lucy. This is not an FDA label, but rather a rabbi's seal of approval that the food does not contain meat or milk. This is not a 100% method for guaranteeing a safe food, but I'd like to see the FDA take this businesses as seriously.
Total Recall
Several times a week, I get a notice like this in my inbox, "Clif Bar & Company is initiating a voluntary recall today of a small amount of 12-pack Blueberry Crisp CLIF® Bars and individual mislabeled Blueberry Crisp CLIF Bars in Chocolate Chip CLIF Bar Wrappers." They put the wrong food in the wrong wrapper. What you thought were Allergen-Free Yum Yums are actually Extra Crispy Anaphylaxies. I'm so glad the FDA recalls these foods and makes us aware, but come on, manufacturers! Really?!?!
My Evil Plans
You do not know what's in your food, and food manufacturers' rights are protected by law, whereas yours are not. And this is good because I want nothing more in the world than to start my own ketchup-making business and bring down Heinz. I want to know their secret blend of tomatoes, high fructose corn syrup, mustard and roach poop so I can convert my garage into a condiment-producing empire. MWWWAAAA HAAA HAAA. Except that all I really want to do is put a dollup of ketchup on my kid's plate to enjoy the safe sweet potato fries that it took us three years to find.
Oh Canada!
The FDA takes this business seriously. They came to my house for a false alarm, for Pete's sake. And I don't hate them. I am just endlessly frustrated that they don't do more. FAAN is advocating for label laws to become more strict and to include more foods. Canada does include mustard as per their food allergy labelling laws. (They made this decision after just 44 cases of reported mustard anaphylaxis.) So, thanks to the internet, I can often figure out which brands hide mustard, so long as a change my search criteria to be Canadian sites.
On a daily basis, this labeling stuff makes life easy and makes life hell. We've pretty much honed in on the safe manufacturers for toothpaste and medicine and lotion and several foods, but keeping a list of brands, ingredients, recall notices, 800 names for milk/eggs/peanuts/tree nuts, etc., can be a real challenge. Grocery and drug store trips take half a day and cost a ridiculous amount of money.
So please peeps, support FARE. You have a right to know what you put in and on your body and the 15 million people with food allergies deserve to eat and brush their teeth and paint their walls without having to worry about dying.
On one hand, I love them...
In 2011, Lucy's lips swelled up to several times their normal size after a salad dressing touched her mouth. I just knew this was because the vegan Caesar dressing had been cross-contaminated with eggs or milk. I called the FDA at 8pm. They called me back at 10pm. What? Seriously? The nice man on the line said, "we care very much about food safety, in particular when it comes to kids." Nice work, guys. The next morning, an FDA case worker was at my house, interviewing me at length and taking samples. I was shocked. I felt comforted. My government is awesome!
Oops. My bad.
Turns out, it was all for nothing. No cross-contamination. Lucy had developed a mustard allergy and the dressing had mustard in it five different ways. My bad. Thanks anyway, feds. I am impressed.
FALCPA
In 2006, because of FAAN's relentless legislative advocacy work, one of the most important pieces of food allergy legislation was passed. This act, known as The Food Allergen Labeling Consumer Protection Act, or FALCPA requires that packaged food labels have ingredients of the eight most allergenic foods declared even if they are spices of flavorings. These eight foods are: peanuts, tree nuts, milk, eggs, fish, shellfish, soy and wheat. Lucy is allergic to the first four, and outgrew a soy allergy at 2-years-old.
This is tremendously helpful. Pre-2006, any of those ingredients could be hiding anywhere and there was no way to know if a pre-packaged food was safe or not. Also, any of those ingredients could have been listed as anything. Milk, for example, could have been labeled as, "casein," "whey," "lactoglobulin" or any of the other scores of milk proteins, enzymes or lipids. In thos dark olden days, you needed a PhD and faith in manufacturers to get through a trip to the grocery store. Except, that you still do.
On the other hand, I hate them...
FALCPA is very limited in scope. It does NOT cover the following. In parenthesis, I've put common allergens found in these products. How do I know about these? Personal experience, research and phone calls. Those parenthesis represent reactions that could have prevented if only labels were accurate.
- deli or bakery foods at grocery stores
- restaurants
- raw meat (marinades, binders and fillers often contain milk and/or egg)
- medicine (most chewables contain milk; many gummy vitamins contain nut oils)
- alcohol (not that we have to worry about this for a while, but liqueurs and beers often contain nuts)
- lotions/soaps/toothpastes/cosmetics (nuts and milk are in many skin and hair products; peanuts are in Chapstick and lipsticks; most toothpastes contain milk and/or eggs)
- vaccines (the virus in the vaccine is often grown in egg and milk is often used as a binder. Lucy gets vaccines at the allergist's office and has to stay four hours for observation. In 2009, she reactive with full-body hives to a vaccine that used milk as a binder. Several hihg-profile cases of anaphylaxis later, the manufacturer admitted this.)
- dentist office cleansers/adhesives (braces, fillings, caps and crowns contain wheat ingredients, which thankfully doesn't impact us. Whiteners often contain milk.)
- products containing food that are not intended for consumption, such as paints and glue (tempura paint contains egg and until recently, Elmer's glue contained milk)
- foods used in manufacturing that are not technically an ingredient (raw seafood is often soaked in milk to reduce the odor; the wax put on raw produce contains milk; milk is used in the tumbling process of many candies).
It also doesn't cover foods that are very similar to the eight foods that are required to be labelled. For example, goat and sheep milk have 96% of the same proteins as cow's milk and are just as allergenic. A product could use another mammalian milk and not have to label it.
"This product manufactured on equipment shared with anthrax"
You've probably seen that some foods have statements like, "May contain peanuts." Or, "manufactured on equipment with food containing eggs." Those statements are completely voluntary. If a fork was used to stir cyanide soup and then used to serve your mashed potatoes, I'm guessing you'd want to know that. I saw a Halloween Snickers bar that said, "Contains peanuts." Following that logic, one might assume that it did not also contain any of the other top eight food allergens. Except that it did contain milk and wheat. Tricky.
The trickiest part is that foods are made on the same equipment as other foods. Bits and pieces of those foods stick and get co-mingled. This has happened in my own kitchen. Mixers, blenders, spoons, frying pans - food residue sticks. Lucy threw up once after taking a wooden spoon out of my clean dishwasher. She immediately vomited. The spoon had been used to stir cheese sauce the night before.
There have been several studies on this phenomenon with peanuts. In candies and baked goods where peanuts were not an ingredient, but where the foods were made on equipment shared with peanut-containing foods, up to 1.5 peanuts were found in the "peanut-free" foods. Lucy experienced anaphylaxis at 1/60th of a peanut. So not requiring "shared equipment" labels on foods is a major failure. We do buy some foods that are made on shared euipment because the manufacturers follow really tight guidelines about cleaning the lines between productions. Some brands, like Tofutti ice cream sandwiches are recalled nearly every year due to cross contamination,
And then there's mustard and roach poop...
Mustard, et al. In other words, the 80 bizillion foods that are not the eight foods required to be labeled. The manufacturers have (and exercise) their legal right not to tell you what is in their patented, propritary spice blend of death. And, since these other ingredients do not have to be labelled, a recipe can change at any time without consumers knowing. Just because a food was safe in July doesn't mean that a new box of it purchased in August has the same ingredients. Worried about GMOs, gluten, MSG, HFCS, roach droppings? Too bad, consumers.
Hey, thanks, Jews.
I'd be remiss if I didn't give a shout out. Where the FDA has failed me, Jewish dietary law has not. Foods labelled as Parve are safe for Lucy. This is not an FDA label, but rather a rabbi's seal of approval that the food does not contain meat or milk. This is not a 100% method for guaranteeing a safe food, but I'd like to see the FDA take this businesses as seriously.
Total Recall
Several times a week, I get a notice like this in my inbox, "Clif Bar & Company is initiating a voluntary recall today of a small amount of 12-pack Blueberry Crisp CLIF® Bars and individual mislabeled Blueberry Crisp CLIF Bars in Chocolate Chip CLIF Bar Wrappers." They put the wrong food in the wrong wrapper. What you thought were Allergen-Free Yum Yums are actually Extra Crispy Anaphylaxies. I'm so glad the FDA recalls these foods and makes us aware, but come on, manufacturers! Really?!?!
My Evil Plans
You do not know what's in your food, and food manufacturers' rights are protected by law, whereas yours are not. And this is good because I want nothing more in the world than to start my own ketchup-making business and bring down Heinz. I want to know their secret blend of tomatoes, high fructose corn syrup, mustard and roach poop so I can convert my garage into a condiment-producing empire. MWWWAAAA HAAA HAAA. Except that all I really want to do is put a dollup of ketchup on my kid's plate to enjoy the safe sweet potato fries that it took us three years to find.
Oh Canada!
The FDA takes this business seriously. They came to my house for a false alarm, for Pete's sake. And I don't hate them. I am just endlessly frustrated that they don't do more. FAAN is advocating for label laws to become more strict and to include more foods. Canada does include mustard as per their food allergy labelling laws. (They made this decision after just 44 cases of reported mustard anaphylaxis.) So, thanks to the internet, I can often figure out which brands hide mustard, so long as a change my search criteria to be Canadian sites.
On a daily basis, this labeling stuff makes life easy and makes life hell. We've pretty much honed in on the safe manufacturers for toothpaste and medicine and lotion and several foods, but keeping a list of brands, ingredients, recall notices, 800 names for milk/eggs/peanuts/tree nuts, etc., can be a real challenge. Grocery and drug store trips take half a day and cost a ridiculous amount of money.
So please peeps, support FARE. You have a right to know what you put in and on your body and the 15 million people with food allergies deserve to eat and brush their teeth and paint their walls without having to worry about dying.
Arsenic: If You've Never Given It to Your Child, How Do You Know It's Really Deadly?
Disclaimer: This is satire. Please, under no circumstances, ever feed your child any poison. I'm writing this after someone we thought was an allergy ally said very similar things in regards to Lucy's allergies. So rather than punch him, (or her... could be a her...) (it was a him, but I won't say who) (I'm dying to say who) (email me) I thought it would be healthier to passively aggressively blog out my feelings on the matter. And now, ladies and gentlemen, I present a satirical essay about feeding your child poison (which you should NEVER do).
I'm sick and tired of hearing about kids not eating arsenic. I mean honestly, how do you really know it's deadly? Have you ever given it to your child? No. Just because some "doctor" says it's "deadly" you act like it's poison. You make sure it's not in your brown rice, even in small amounts. You won't even let your kid NEAR the stuff. I get it. You need attention. Why don't you just go put your kid in a Tyvec suit, inside a bubble and live out your helicopter parenting fantasies in an arsenic-free nanny state?
Deadly, you say? Prove it. What your kid really needs is a good dose of arsenic to get tougher, build up some immunity. I'm no doctor, but I have a business degree and I like to think of myself as smarter than you, and guess what, that makes me entitled to have a pretty strong opinion on just about everything, (seriously, try me) especially things about which I actually know nothing. It's called common sense.
Look, I've seen Princess Bride. Remember how Westley built up immunity to poison and didn't die when he drank it? You know why? Because he wasn't a pansy. Is that what you want your kid to be? A cowering, weak, nimby-pamby baby-man who is terrified to be in the same room with arsenic, let alone, eat it?
It's science. It's called Mithridatism. It's the act of giving people small amounts of poison so that they build up a tolerance to it. In fact, it's done for the very-serious-and-never-to-be-joked-about-or-taken-lightly-deadly-medical-condition of food allergy-induced anaphylaxis.
Doctors give kids a little every day and eventually, those kids are cured. Sure, every kid is different, and most start out at between 1/240th to 1/120th of one peanut, which is such a small amount you can barely see it, and to even qualify for participation in peanut Mithridatism at that teeny amount, the doctor has to witness the child experiencing anaphylaxis to that spec of peanut. Then, for those that can tolerate it, they increase the dosage by spec-of-dust-sized amounts every month, under medical supervision, at a hospital, with a Hep_Lock in the kid's arm, and do this over the course of 2-5 years, during which time most kids experience serious intestinal problems, and then have a 30% success rate of the kid being able to eat peanuts, and even then the kid has to eat peanuts every day for the rest of his or her life because scientific studies have shown that skipping peanuts even one day then eating them again will cause anaphylaxis.
But that's peanuts. That shit is crazy deadly. I'm talking about arsenic here.
So, what I'm saying is you should probably just give it your best guess and feed your kid whatever amount of arsenic you feel is about right, in the non-medical setting of your own home, and see what happens. That's what I mean by common sense.
I know some parents that are so ridiculously neurotic about it that they won't even let their kids eat food that was on the same equipment as arsenic in the factory. "Oh, arsenic is sticky and it leaves behind residue that gets in the food and I'm overprotective and crazy." And some are so outrageous that just because a food is made in the same building as arsenic, they won't let their kids eat it. Seriously? "Oh, the arsenic dust can get into other food and even though I've never seen my kid die from trace amounts of arsenic dust, I'm just an insane person who assumes it could be deadly."
Whatever.
Look, people. I don't hate these types of parents, I'm just sick of them freaking out about all these little things. Again, I'm no doctor, or scientist, or professor, or food allergy-sufferer, and I've never read a scientific article about it, but I have gut feelings and this arsenic paranoia wasn't around when I was a kid. It's something new and it was invented by parents who need attention. It's just a shame that their kids have to suffer for it.
Now, excuse me. I have some cancer patients to advise about their "tumors."
Please donate today. Because this is the kind of crap my five-year-old has to put up with. http://www.foodallergywalk.org/triangleNC/shelly
Note to Self: What To Say to My Daughter the Next Time a Trip to Whole Foods Ends in Tears
Yesterday, while driving Lucy home from a trip to the grocery store,
she was unusually quiet. A glance into my rear-view told me she was
pensive. A few moments later, she broke the silence with this:
Lucy: Mom, when I grow up, I can be anything I want to be, right? That's how life works?
Me: Yes! As long as you work hard you can be anything you want. What do you want to be when you grow up?
(In the split second before she responded, my brain had jumped ahead to a pro-girl chat about scientists or being Batman for Halloween. I wasn't prepared for what came next.)
Lucy: When I grow up, I don't want to have food allergies. I want to be a kid without any allergies. Can I work hard and not have allergies?
Me: ...
What do you say to that? I was teary-eyed and choked up. She caught me off guard. Eventually, I got it together enough to say something about her taking part in the clinical research study and that sometimes kids outgrow allergies. But she saw through my bullshit and, in a way that is very Lucy, called me out on it. "But I might not ever outgrow them."
In my quiet moments when I can look at things logically and objectively and totally divorce myself from any emotional attachment, I tell myself it's not cancer. It's not diabetes. It's not MS or CF or CP or spectrum disorder or a million other awful things.
On the other hand, I'm her mommy and the moments where I can be totally objective and a-emotional are rare.
Yesterday, against my better judgement, I took Lucy to Whole Foods with me. Whole Foods is just one of four grocery stores I visit each Sunday because finding safe brands of foods, vitamins, shampoo, lotion, anti-histamine, toothpaste, etc. means that no one store carries everything we need. Whole Foods, despite what you'd think, is THE WORST. I have a love/hate relationship with the Mother of all fresh, rare, organic, family-farm bred, grass-fed, GMO-free, anti-HFCS lefty hippie grocers. On one hand, they have safe items I can't get for Lucy anywhere else. On the other hand, the store is crawling with patchouli-scented, busy-body, know-it-all, in-your-face hippies who truly believe that if I'd only give my child the right combination of raw, unpasteurized goat milk and probiotics, her allergies (which are likely the result of my failed attempts at attachment parenting) would be cured. And on the third hand, oh look! A new flavor of flax seed chips only $7.99 for 0.25 ounces! I must have them. (I admit, I'm a sucker for this stuff.)
Whole Foods, in Cary, on the weekends has free samples. There are three or four tables set up with pseudo-health food pedlars. "Would you like to try our artesian sheep cheese sticks breaded in Italian panko and oven-baked in a brick oven made from fair-trade bricks?," they say, holding up a sustainably-forested bamboo toothpick skewered with the aforementioned food in Lucy's general direction.
"No thank you."
"Oh, it's okay," they persist. "These are fat free and guaranteed to make your midi-chlorians fight off free-range free radicals. Let her try one."
Lucy gets excited. The other adult, the other authority figure in her proximity just said it was okay to eat. "Is it safe?" She asks with a hope so sincere it breaks my heart to even look her in the eyes.
"No thank you."
"Here, take it with you. She can eat it later. They are so delicious. I give them to my kids whom I happen to be wearing and breastfeeding right now while they're home from college break."
"NO!"
I walk away. And I'm pissed and Lucy is disappointed. The fact that my kid medically cannot eat their stupid food is none of their business. I don't want to "out" Lucy's medical history. If she chose to tell them, as she sometimes does, that she is allergic, that's cool. Her medical issues, her choice. But for the love of unshaven armpits, leave us alone. No means no, you stinky hippie.
This happens at least once every single stinkin' time we go to Whole Foods. It happens at other stores too, but the aggression of the Whole Foods Sampleteers takes the gluten-free cake.
On this particular day, it was supposed to be a short trip. I just needed to give Whole Foods $35 for a month's supply of chewable vegan calcium supplements. But then that whole sample bullshit happened. This made Lucy determined, and I liked her determination. She was on a mission to find a new food that was safe for her. She asked to get out of the cart on the kids' food isle so we could find something for her. Yes, at four years old, she rides in the cart. It's my rule at Whole Foods because I don't trust that some cage-free Sample Missionary isn't going to give her some almond-milk flavored kool aid if I let her go free range. So, for 30 minutes, she took boxes and jars and packages off the shelves and handed them to me.
"Mommy, have I had this before?"
"No."
"Mommy, read the ingredients. Is it safe for me?"
"No. May contain cashews."
Another reason I do like Whole Foods is that they label their foods really, really well. While it is not legally required for them to do so, they label all their house brands to let you know if they were manufactured on equipment shared with any of the Top Eight food allergens. This makes shopping easier because I can, at a glance, rule out 90% of the food in the store without having to do any research or make any phone calls. But on this day, it just pissed me off.
With every label, Lucy and I both became more and more frustrated. We found nothing that fit her criteria of being both something she'd never had and something safe. This is due to the fact that I have spent countless hours going through this same exercise on hundreds of other trips to Whole Foods by myself. If it is safe, I buy it. After 30 minutes, we were angry, sad and tired of skirting the shopping carts coming at us down the narrow aisle. Finally I said, "I think I have a Dum Dum in my backpack." "OK, I'll have that."
We sat in the parking lot and she ate her Dum Dum and we drove home. That's when THE conversation from above happened.
I've been thinking a lot about what transpired yesterday. I think her frustration comes from having so little choice in her life. She's four, so like all four-year-olds, she has very little control over and choice in her world. But most kids get to try a bite of mommy's sushi roll or daddy's french fries. Most kids get to have a nibble of this or that and see if they like it. She doesn't. She knows it is serious and she knows it's absolute and that is incredibly frustrating for her (and us). Food is such a central part of life and socialization. Just today, there was an unannounced Popsicle party in her classroom and she sat isolated from the rest of the class while they ate their treats and had fun together. Yes, life is unfair and kids have to learn that. I understand. But as her mom, sometimes I need to scream into a pillow.
Here's what I wish I had said to her yesterday:
Lucy: When I grow up, I don't want to have food allergies. I want to be a kid without any allergies. Can I work hard and not have allergies?
Me: Food allergies can be frustrating, but food allergies are part of who you are. They don't define you, but they have helped shape you. You are cautious and keenly observant. Not always being able to be part of the crowd has given you a strong sense of self. You know what you like and are unaffected by what other people like. You see a picture of Cinderella and call her "that girl from the movie about the funny mice." The independence that has been forced upon you by your allergies has given you freedom from conformity, and you have embraced it. Your allergies have made you eat healthfully, and taught you about food labels, and cross contamination. You have an innate sense of justice and fairness, which, given your genetics may be as much nature as nurture. I love that you never back down when you feel that fire igniting your soul at the sight of injustice. You have been a scientist since you could understand anything about your allergies, testing hypotheses about safety and ingredients. You have the gift of knowing who your true friends are because they must pass a test of being willing to accommodate you. I wish I could have had a friend test of loyalty and been spared a lot of heartache as a child. You may not know it, but your food allergies are a gift. Each challenge they give you builds your character and teaches you how to deal with adversity.
There are times that having food allergies will be a huge pain and will cause you to feel sad. It's up to you to turn that sadness into action. If you want to stop food allergies, then work at it. You may not cure them, but you can try your hardest. Become a doctor. Become a research scientist. Continue being the advocate you already are.
So, yes, Lucy, you can be anything you want, but be you. Be who you are. Own it, work it, embrace it. I love you, allergies and all, and can't wait to see what you become. I can promise that someday you won't be a kid with allergies; you'll grow into a brilliant woman with allergies. And you may become a doctor with allergies or a research scientist with allergies or a ballerina astronaut with allergies or a president with allergies, just like you'd be a woman with blue eyes, a doctor with brown hair, a researcher that enjoys running fast, or a president with a passion for stuffed animals. Each of those things contribute to making you who you are. I can't imagine a better you in all the world than the you that you are.
Please consider donating to FARE today.
Lucy: Mom, when I grow up, I can be anything I want to be, right? That's how life works?
Me: Yes! As long as you work hard you can be anything you want. What do you want to be when you grow up?
(In the split second before she responded, my brain had jumped ahead to a pro-girl chat about scientists or being Batman for Halloween. I wasn't prepared for what came next.)
Lucy: When I grow up, I don't want to have food allergies. I want to be a kid without any allergies. Can I work hard and not have allergies?
Me: ...
What do you say to that? I was teary-eyed and choked up. She caught me off guard. Eventually, I got it together enough to say something about her taking part in the clinical research study and that sometimes kids outgrow allergies. But she saw through my bullshit and, in a way that is very Lucy, called me out on it. "But I might not ever outgrow them."
In my quiet moments when I can look at things logically and objectively and totally divorce myself from any emotional attachment, I tell myself it's not cancer. It's not diabetes. It's not MS or CF or CP or spectrum disorder or a million other awful things.
On the other hand, I'm her mommy and the moments where I can be totally objective and a-emotional are rare.
Yesterday, against my better judgement, I took Lucy to Whole Foods with me. Whole Foods is just one of four grocery stores I visit each Sunday because finding safe brands of foods, vitamins, shampoo, lotion, anti-histamine, toothpaste, etc. means that no one store carries everything we need. Whole Foods, despite what you'd think, is THE WORST. I have a love/hate relationship with the Mother of all fresh, rare, organic, family-farm bred, grass-fed, GMO-free, anti-HFCS lefty hippie grocers. On one hand, they have safe items I can't get for Lucy anywhere else. On the other hand, the store is crawling with patchouli-scented, busy-body, know-it-all, in-your-face hippies who truly believe that if I'd only give my child the right combination of raw, unpasteurized goat milk and probiotics, her allergies (which are likely the result of my failed attempts at attachment parenting) would be cured. And on the third hand, oh look! A new flavor of flax seed chips only $7.99 for 0.25 ounces! I must have them. (I admit, I'm a sucker for this stuff.)
Whole Foods, in Cary, on the weekends has free samples. There are three or four tables set up with pseudo-health food pedlars. "Would you like to try our artesian sheep cheese sticks breaded in Italian panko and oven-baked in a brick oven made from fair-trade bricks?," they say, holding up a sustainably-forested bamboo toothpick skewered with the aforementioned food in Lucy's general direction.
"No thank you."
"Oh, it's okay," they persist. "These are fat free and guaranteed to make your midi-chlorians fight off free-range free radicals. Let her try one."
Lucy gets excited. The other adult, the other authority figure in her proximity just said it was okay to eat. "Is it safe?" She asks with a hope so sincere it breaks my heart to even look her in the eyes.
"No thank you."
"Here, take it with you. She can eat it later. They are so delicious. I give them to my kids whom I happen to be wearing and breastfeeding right now while they're home from college break."
"NO!"
I walk away. And I'm pissed and Lucy is disappointed. The fact that my kid medically cannot eat their stupid food is none of their business. I don't want to "out" Lucy's medical history. If she chose to tell them, as she sometimes does, that she is allergic, that's cool. Her medical issues, her choice. But for the love of unshaven armpits, leave us alone. No means no, you stinky hippie.
This happens at least once every single stinkin' time we go to Whole Foods. It happens at other stores too, but the aggression of the Whole Foods Sampleteers takes the gluten-free cake.
On this particular day, it was supposed to be a short trip. I just needed to give Whole Foods $35 for a month's supply of chewable vegan calcium supplements. But then that whole sample bullshit happened. This made Lucy determined, and I liked her determination. She was on a mission to find a new food that was safe for her. She asked to get out of the cart on the kids' food isle so we could find something for her. Yes, at four years old, she rides in the cart. It's my rule at Whole Foods because I don't trust that some cage-free Sample Missionary isn't going to give her some almond-milk flavored kool aid if I let her go free range. So, for 30 minutes, she took boxes and jars and packages off the shelves and handed them to me.
"Mommy, have I had this before?"
"No."
"Mommy, read the ingredients. Is it safe for me?"
"No. May contain cashews."
Another reason I do like Whole Foods is that they label their foods really, really well. While it is not legally required for them to do so, they label all their house brands to let you know if they were manufactured on equipment shared with any of the Top Eight food allergens. This makes shopping easier because I can, at a glance, rule out 90% of the food in the store without having to do any research or make any phone calls. But on this day, it just pissed me off.
With every label, Lucy and I both became more and more frustrated. We found nothing that fit her criteria of being both something she'd never had and something safe. This is due to the fact that I have spent countless hours going through this same exercise on hundreds of other trips to Whole Foods by myself. If it is safe, I buy it. After 30 minutes, we were angry, sad and tired of skirting the shopping carts coming at us down the narrow aisle. Finally I said, "I think I have a Dum Dum in my backpack." "OK, I'll have that."
We sat in the parking lot and she ate her Dum Dum and we drove home. That's when THE conversation from above happened.
I've been thinking a lot about what transpired yesterday. I think her frustration comes from having so little choice in her life. She's four, so like all four-year-olds, she has very little control over and choice in her world. But most kids get to try a bite of mommy's sushi roll or daddy's french fries. Most kids get to have a nibble of this or that and see if they like it. She doesn't. She knows it is serious and she knows it's absolute and that is incredibly frustrating for her (and us). Food is such a central part of life and socialization. Just today, there was an unannounced Popsicle party in her classroom and she sat isolated from the rest of the class while they ate their treats and had fun together. Yes, life is unfair and kids have to learn that. I understand. But as her mom, sometimes I need to scream into a pillow.
Here's what I wish I had said to her yesterday:
Lucy: When I grow up, I don't want to have food allergies. I want to be a kid without any allergies. Can I work hard and not have allergies?
Me: Food allergies can be frustrating, but food allergies are part of who you are. They don't define you, but they have helped shape you. You are cautious and keenly observant. Not always being able to be part of the crowd has given you a strong sense of self. You know what you like and are unaffected by what other people like. You see a picture of Cinderella and call her "that girl from the movie about the funny mice." The independence that has been forced upon you by your allergies has given you freedom from conformity, and you have embraced it. Your allergies have made you eat healthfully, and taught you about food labels, and cross contamination. You have an innate sense of justice and fairness, which, given your genetics may be as much nature as nurture. I love that you never back down when you feel that fire igniting your soul at the sight of injustice. You have been a scientist since you could understand anything about your allergies, testing hypotheses about safety and ingredients. You have the gift of knowing who your true friends are because they must pass a test of being willing to accommodate you. I wish I could have had a friend test of loyalty and been spared a lot of heartache as a child. You may not know it, but your food allergies are a gift. Each challenge they give you builds your character and teaches you how to deal with adversity.
There are times that having food allergies will be a huge pain and will cause you to feel sad. It's up to you to turn that sadness into action. If you want to stop food allergies, then work at it. You may not cure them, but you can try your hardest. Become a doctor. Become a research scientist. Continue being the advocate you already are.
So, yes, Lucy, you can be anything you want, but be you. Be who you are. Own it, work it, embrace it. I love you, allergies and all, and can't wait to see what you become. I can promise that someday you won't be a kid with allergies; you'll grow into a brilliant woman with allergies. And you may become a doctor with allergies or a research scientist with allergies or a ballerina astronaut with allergies or a president with allergies, just like you'd be a woman with blue eyes, a doctor with brown hair, a researcher that enjoys running fast, or a president with a passion for stuffed animals. Each of those things contribute to making you who you are. I can't imagine a better you in all the world than the you that you are.
Please consider donating to FARE today.
Food Allergies 101
Over the next few weeks, I'll be posting some glimpses into our
family's life with food allergies and how we're impacted on a daily
basis. But let's start with what food allergies are.
The FARE Walk for Food Allergy isn't just about raising money, it's about raising awareness, and one of the things I've learned in the last four years is that there are A LOT of misconceptions about food allergies. I hope you'll learn something here and pass on what you've learned.
What is a food allergy?
A food allergy is an adverse immune system response to food protein. The immune system basically plays out a self-fulfilling prophecy: it believes that a food is harmful to the body, so in order to "protect" the body, it harms the body. The immune system has good intentions, but it's like turning on a sprinkler that floods the whole neighborhood due to the smoke from a birthday candle.
In the case of food allergies, the immune system produces something called IgE. IgE calls up the mast cells and the mast cells fire histamine into the bloodstream.
Histamine
Histamine, you say? I'm allergic to pollen. Is this the same histamine of which you speak?
I'm glad you asked. Yes, it is. You have mast cells concentrated in different places: eyes, nose, throat, lungs, skin, cardiovascular system and GI tract. Pollen gets in your nose and eyes and on you skin and causes unpleasant reactions and sensations. But because food is ingested it also touches all those other places. The more mast cells impacted, the more histamine released. It happens quickly and causes weirdness system-wide:
One tricky aspect of dealing with food allergies is that it can take a very teeny amount to cause a serious reaction. If the immune system is already on high alert with a cold, for example, it is even easier for a severe reaction to occur. The same person may react severely on one occasion to a very tiny amount and on a different day to a larger amount of the same food. The symptoms of the reaction may be totally different on different days.
Anaphylaxis
If any two of these body system react simultaneously, or if throat and/or cardio symptoms occur alone, the person is experiencing anaphylaxis. It is life threatening. I speak from experience. My husband, my daughter and I have each had it.
My daughter had anaphylaxis (wheezing, face turned blue, covered in hives) at about 6 months old after ingesting what was literally a drop of milk. She experienced anaphylaxis again in 2011 when she first entered the Oral Immunotherapy study at Duke when she was given 1/60th of a peanut. That reaction involved mouth hives and vomiting.
Anaphylaxis can cause permanent damage to the immune system, heart, lungs and brain and each instance of it is very hard on the body in general. It can take a full month to get back to normal.
Anaphylaxis can be deadly. It happens very quickly. In my own anaphyalxis experience, I very quickly lost strength and coordination and could not unzip my purse to get my Epi-Pen. And I was an adult, who understood what was happening and what I needed to do. Kids, not so much. Often kids are scared of getting in trouble for eating a taboo food and are slow to tell a grown up. Or, they don't understand what's happening. Or, they cannot articulate it because of age, or lack of experience, or rapid progression of anaphylaxis.
In the US, between 500-1000 people die each year from anaphlaxis. Every three minutes, food allergies cause a trip to the ER. So many reactions resulting in so few deaths is due in part to the wonderful work of FAAN, immediate access to life-saving Epi-Pens and quick thinking.
Anaphylaxis, Science Edition
In the state of anaphylaxis, the person is dying. The body responds to mast cells being released physiologically with extreme vasodilation in the blood vessels (drop in blood pressure) and broncho-constriction in the lungs (results in inability to breath). There are other physiologic symptoms that occur, but the drop in blood pressure and inability to breathe are what tends to result in life-ending anaphylaxis.
Epinephrine is a chemical that is released by your body, in fact, before you give epinephrine-your body has already attempted to fight the life-threatening state of anaphylaxis. As mast cells are released, the body simply cannot keep up with this demand. Epinephrine causes peripheral vasoconstriction, which elevates the blood pressure (in anaphylaxis, the blood pressure will drop dangerously low and can result in fatal cardiac arrythmias due to lack of oxygen). In the lungs, epinephrine does the opposite. The lungs experience a broncho-dilation (which results in the ability to pass oxygen through the lungs into the bloodstream).
Holy freakin' cow. Anaphylaxis sounds scary.
Dude. Right? I know. Have I mentioned I'm doing a fundraising walk to help cure it? http://www.foodallergywalk.org/triangleNC/shelly
What is NOT a food allergy?
Lactose intolerance, gluten sensitivity and not liking certain foods ARE NOT ALLERGIES. Those things are not fun and they make eating a real pain, but they are biologically different things and not life-threatening. So, people with a gluten and/or lactose thing: I get that you and I are sort of in the same boat, and you want to tell me a relate-able story. Just please understand that if this boat hits an ice berg, the life preservers are reserved for you and we'll be over here sinking into an icy death. Just sayin'.
If you ever have questions about food allergies, please just ask. There's more information coming in the next month. Thanks to those of you who have already donated and/or advocated. Your contributions have provided a ton of life-saving education to other parents of food allergic kids and adult food allergy sufferers.
Will she outgrow it?
No one knows. There's a 20% chance that kids will outgrow peanut allergy by their 5th birthday and most kids who are going to outgrow milk and egg do so before they are 2 years old.
So, the odds aren't in her favor, but we are so lucky to have UNC and Dr. Burks (world renowned food allergy doctor) just down the road. Lucy is currently participating in her third year of an peanut immunotherapy research clinical trial and we hope to start a baked milk immunotherapy program in October.
Immunotherapy, if it works, is helpful because as long as a maintenance dose is taken every single day for the rest of the person's life s/he can eat the allergen. The person is still allergic to it, though, and skipping a daily dose of the food can mean anaphylaxis the next time it's eaten, even if they're been taking a daily maintenance dose for 10 years. Immunotherapy isn't a cure, but it's a way to prevent anaphylaxis from accidental ingestion of an allergen.
The FARE Walk for Food Allergy isn't just about raising money, it's about raising awareness, and one of the things I've learned in the last four years is that there are A LOT of misconceptions about food allergies. I hope you'll learn something here and pass on what you've learned.
What is a food allergy?
A food allergy is an adverse immune system response to food protein. The immune system basically plays out a self-fulfilling prophecy: it believes that a food is harmful to the body, so in order to "protect" the body, it harms the body. The immune system has good intentions, but it's like turning on a sprinkler that floods the whole neighborhood due to the smoke from a birthday candle.
In the case of food allergies, the immune system produces something called IgE. IgE calls up the mast cells and the mast cells fire histamine into the bloodstream.
Histamine
Histamine, you say? I'm allergic to pollen. Is this the same histamine of which you speak?
I'm glad you asked. Yes, it is. You have mast cells concentrated in different places: eyes, nose, throat, lungs, skin, cardiovascular system and GI tract. Pollen gets in your nose and eyes and on you skin and causes unpleasant reactions and sensations. But because food is ingested it also touches all those other places. The more mast cells impacted, the more histamine released. It happens quickly and causes weirdness system-wide:
- Skin: hives, blisters, redness, swelling
- GI: cramping, massive vomiting, diarrhea
- Respiratory: runny nose, watery eyes, severe sneezing, coughing, wheezing, asthma, drooling
- Cardiovascular: sudden drop in blood pressure
One tricky aspect of dealing with food allergies is that it can take a very teeny amount to cause a serious reaction. If the immune system is already on high alert with a cold, for example, it is even easier for a severe reaction to occur. The same person may react severely on one occasion to a very tiny amount and on a different day to a larger amount of the same food. The symptoms of the reaction may be totally different on different days.
Anaphylaxis
If any two of these body system react simultaneously, or if throat and/or cardio symptoms occur alone, the person is experiencing anaphylaxis. It is life threatening. I speak from experience. My husband, my daughter and I have each had it.
My daughter had anaphylaxis (wheezing, face turned blue, covered in hives) at about 6 months old after ingesting what was literally a drop of milk. She experienced anaphylaxis again in 2011 when she first entered the Oral Immunotherapy study at Duke when she was given 1/60th of a peanut. That reaction involved mouth hives and vomiting.
Anaphylaxis can cause permanent damage to the immune system, heart, lungs and brain and each instance of it is very hard on the body in general. It can take a full month to get back to normal.
Anaphylaxis can be deadly. It happens very quickly. In my own anaphyalxis experience, I very quickly lost strength and coordination and could not unzip my purse to get my Epi-Pen. And I was an adult, who understood what was happening and what I needed to do. Kids, not so much. Often kids are scared of getting in trouble for eating a taboo food and are slow to tell a grown up. Or, they don't understand what's happening. Or, they cannot articulate it because of age, or lack of experience, or rapid progression of anaphylaxis.
In the US, between 500-1000 people die each year from anaphlaxis. Every three minutes, food allergies cause a trip to the ER. So many reactions resulting in so few deaths is due in part to the wonderful work of FAAN, immediate access to life-saving Epi-Pens and quick thinking.
Anaphylaxis, Science Edition
In the state of anaphylaxis, the person is dying. The body responds to mast cells being released physiologically with extreme vasodilation in the blood vessels (drop in blood pressure) and broncho-constriction in the lungs (results in inability to breath). There are other physiologic symptoms that occur, but the drop in blood pressure and inability to breathe are what tends to result in life-ending anaphylaxis.
Epinephrine is a chemical that is released by your body, in fact, before you give epinephrine-your body has already attempted to fight the life-threatening state of anaphylaxis. As mast cells are released, the body simply cannot keep up with this demand. Epinephrine causes peripheral vasoconstriction, which elevates the blood pressure (in anaphylaxis, the blood pressure will drop dangerously low and can result in fatal cardiac arrythmias due to lack of oxygen). In the lungs, epinephrine does the opposite. The lungs experience a broncho-dilation (which results in the ability to pass oxygen through the lungs into the bloodstream).
Holy freakin' cow. Anaphylaxis sounds scary.
Dude. Right? I know. Have I mentioned I'm doing a fundraising walk to help cure it? http://www.foodallergywalk.org/triangleNC/shelly
What is NOT a food allergy?
Lactose intolerance, gluten sensitivity and not liking certain foods ARE NOT ALLERGIES. Those things are not fun and they make eating a real pain, but they are biologically different things and not life-threatening. So, people with a gluten and/or lactose thing: I get that you and I are sort of in the same boat, and you want to tell me a relate-able story. Just please understand that if this boat hits an ice berg, the life preservers are reserved for you and we'll be over here sinking into an icy death. Just sayin'.
If you ever have questions about food allergies, please just ask. There's more information coming in the next month. Thanks to those of you who have already donated and/or advocated. Your contributions have provided a ton of life-saving education to other parents of food allergic kids and adult food allergy sufferers.
Will she outgrow it?
No one knows. There's a 20% chance that kids will outgrow peanut allergy by their 5th birthday and most kids who are going to outgrow milk and egg do so before they are 2 years old.
So, the odds aren't in her favor, but we are so lucky to have UNC and Dr. Burks (world renowned food allergy doctor) just down the road. Lucy is currently participating in her third year of an peanut immunotherapy research clinical trial and we hope to start a baked milk immunotherapy program in October.
Immunotherapy, if it works, is helpful because as long as a maintenance dose is taken every single day for the rest of the person's life s/he can eat the allergen. The person is still allergic to it, though, and skipping a daily dose of the food can mean anaphylaxis the next time it's eaten, even if they're been taking a daily maintenance dose for 10 years. Immunotherapy isn't a cure, but it's a way to prevent anaphylaxis from accidental ingestion of an allergen.
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