The Food Challenge Challenge

09/25
2012

When Milo had a food challenge to soy last year, he talked about it incessantly for the month leading up to it.  He was the only one in the family who was still allergic to soy so before the challenge the boys spent a lot of time talking about all of the new things they may be able to eat in the house.  His brothers wished him luck.  Milo promised them he would be able to eat it.  He truly believed that he would be.  He wanted it badly enough that surely the challenge couldn’t go any other way.  He was eager to try it.  He was confident.  Milo isn’t one for losing.  In fact, to say that he has a penchant for winning would be a gross understatement.  In his heart, he believed he would fly through this challenge and triumph over soy.

Milo has FPIES to soy.  FPIES stands for food protein-induced enterocolitis syndrome.  This syndrome is one of the spectrum of gastrointestinal allergic diseases that causes an allergic individual to have potentially massive vomiting and diarrhea about 2 hours after ingestion of the offending food.  This can lead to hypotension and shock.  The treatment is not epinephrine but rapid administration of IV fluid.  The challenges for FPIES are typically done in a hospital setting with an IV in place.  Milo’s challenge went well at first. He scarfed down some soy pudding and soy chips, and we waited.  All seemed fine until shortly after the nurse took the IV out and he started vomiting and vomiting.  It was at that time, the allergist and nurse declared it a failed food challenge.  And they used that word too, fail.  We all did.  After all, I was trained to look at it that way too.  A food challenge is something you pass or fail.  He failed.  And he heard that loud and clear.  His shoulders hunched over and he was quiet.  He didn’t feel well.

A few days after Milo failed his soy challenge, we were doing some running around.  As he passed me to get into the car, he called himself a loser.  I had never heard him talk that way or use that word before.  When I asked him why in the world he would say that about himself, he reflected back on the soy challenge and said, “Well, Mommy, when you fail at something, it’s the same as losing so I’m a loser.”  Oh, no.  He had been feeling as though he was a failure, a disappointment to me, to himself and to the family, ever since that soy challenge a few days before when his shoulders hunched and he grew quiet.  We used the term “fail” with nonchalance, as medical jargon, but it was medical jargon that broke the heart of a five year old and we didn’t think twice about using that expression.  He failed the challenge.  But he heard something quite different.  He heard that he was the failure.

Merriam-Webster dictionary defines a challenge as “the act or process of provoking or testing physiological activity by exposure to a specific substance; especially : a test of immunity by exposure to an antigen”.  Of course, allergists would call a food challenge a challenge.  During a food challenge, we are presenting an antigen (food protein) to the body to see if the immune system reacts to it.  Medically speaking, the result of a challenge being referred to as a pass or a fail also makes complete sense.  The immune system either passed the challenge by tolerating the antigen introduction or it failed the challenge by reacting negatively to the antigen introduction. It’s black or white.  It’s pass or fail.

But there is another definition for the word challenge as defined by Merriam-Webster, a summons that is often threatening, provocative, stimulating, or inciting; specifically : a summons to a duel to answer an affront”.  My guess is that a child’s understanding of a challenge is more similar to this definition than the former.  A challenge is a duel, a match, a game.  It’s a matter of winning or losing and directly relates to the ability or the inability to do something.  It is effort dependent.

When we call the result of a challenge a “pass” or a “fail”, we might as well tell the children that they won or lost.  The term “pass” is victorious.  It’s celebratory.  It means you rose to the occasion.  Just hearing that word makes you want to stand up straighter, stick your chest out.  There is a pride that accompanies this word.  Failing feels very much the opposite.  The word itself makes you feel sad and ashamed.  To fail at something indicates that there was a lack of drive or desire to be successful.  Maybe you didn’t want it badly enough.  Failing begs the question, what if I would have been better prepared?  The word “fail” has broken many a heart.

Hearing my son refer to himself as a loser because his body was not able to tolerate soy was a very poignant and painful experience for me.  He took the results of this challenge personally.  He felt as though this result was a reflection of himself, his desires, his talents, his imagination really.  He had pictured the soy challenge as a success, he imagined what he and his brothers would do and what they could eat if he passed.  He felt a burden and responsibility to pass this challenge.  And when his little body began vomiting, he felt like he had ruined everything.  He couldn’t live up to his imagination.  He already felt like a failure and then we confirmed his thoughts by calling the challenge a “fail”.  A dagger to an already breaking heart.

Since this experience, I approach a food challenge a little differently.  First, I call it what it is.  I tell my children that a challenge is a way to see if the cells in your body, which you have no control over, react to the presence of a certain food or not.  Instead of labeling the outcome of a food challenge as a pass or a fail, I simply call that what it is, too.  The result is whether your body is able to eat a particular food or unable to eat it.  It’s about the body and not the spirit.  It’s about the cells, not the desire.  The result of the challenge is what your body does, not what you want it to do.  It’s effort independent.

Thinking of a challenge in this way may ease a little of the pressure a child feels when they are undergoing a food challenge.  It minimizes the feeling that any amount of effort or passion or desire impacts the outcome.  Often children with food allergies already feel that they are at fault for the food difficulties within their family and so they certainly don’t need more guilt associated with food.  They don’t need to feel like if they just wanted to eat it more or hoped harder that things would be different.

Most importantly, before a food challenge, I simply reinforce my love for them.  I remind them we will love them either way and will not blame them if they are still allergic.  No one will be mad at them.  Although it is hard not to get excited about the prospect of no longer being allergic to a food, we try to reign in that excitement prior to the challenge. We let them know that if they are able to eat the food, it will be great to have another food that is safe.  If they unable to eat it, we talk about the fact that we will continue to live the great life that we are living and will try again in the future.  Either way, we love them just the same.

At our most recent challenge, I cringed as we again heard the word “fail”.  I obviously don’t blame the allergists for using that term but I would encourage those of us who perform food challenges for our patients to use the “f” word in our charts but not as much with the children.  It’s just one little word.  Leave it out.  There’s so much at stake here.  Food challenges leave a child feeling vulnerable and out of control already, let’s not make them also feel responsible for the persistence or resolution of the food allergy.  That’s too much pressure. Let’s give the children a break and avoid that label.  Perhaps saying, “Your body is unable to eat peanuts yet” or “Your body is now able to eat peanuts” is better way to put it.  No guilt, no burdens, just a matter of fact.  Because, let’s face it, the children know when they start to feel sick that they have failed the food challenge. They feel it in their mouth, their tummy, their skin, their throat.  They don’t need to feel it in their heart, too.

 

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Sarah | 66 Comments | Permalink
Observations

My Disordered Eating

07/12
2012

I’m hungry, maybe a slice of cheese pizza.  (Wouldn’t Gino love that?)  I know but I’m not talking about Gino.  I’m talking about me.  I’m talking about what sounds good to me for lunch.  (Fine, but I bet it would sound good to him too, don’t you think?  I mean, if he could eat it.)  I don’t want to think about that.  (Just for a second, picture him eating a slice and how happy he would be.)  I don’t know.  I’m not in the mood for pizza anymore.  (Why not?)  I mean if my kids can’t eat it, why should I get to?  (True, but you are alone and you are hungry.)  Maybe I’ll get a quick cheese quesadilla and a side of beans instead.  (Go ahead. Hurry and order it before I start talking again.) I’m hungry.  Let me just take a bite.  It’s so good.  (Oh, I bet it is… with all that wheat and cow’s milk.)  Oops, there’s so much cheese that when I took my first bite, a long string of it dragged across my chin.  I need a napkin.  (And a wipe, you know, before you kiss the kids since now your face is dripping in allergens.)  I’ll eat some beans then.  (Remember how much Gino loved beans before he started reacting to them and how sick he got the last time he ate them?)  Maybe I’m full.  (You hardly ate.)  I’m not in the mood for it anymore. (So, when are you gonna eat then?)  When you stop talking so much and I can forget that I am enjoying food that the kids can’t eat!  (Makes sense.)  Really?  Does it?

Does it make sense that we feel bad for eating food that makes our child sick?  Sure.  Does it make sense that we find ourselves avoiding foods that our child has reacted to?  Sure.  Does it make sense that we should never again allow ourselves to joyfully eat that food?  No.  There are some parents of allergic children who choose to completely avoid the foods to which their children are allergic.  If you choose to avoid foods that your child cannot eat because it makes you happy, that may well be a good choice for you.  But if you are avoiding these foods out of guilt and fear, or out of a desire to make things fair or as some sort of well-deserved punishment for yourself, it might be time to rethink this.  You do not need to punish yourself for your child’s food allergy.

Emotionally speaking though, it makes perfect sense that we feel we may never be able to joyfully eat the foods that our children cannot. Some experiences with food, you just can’t get over.  For example, one time I found an eyelash in a bowl of potato soup in my work cafeteria, whether or not it was mine (I really don’t think it was) is completely irrelevant.  I haven’t stomached another bowl of potato soup in 17 years.  Another time at a Corner Bakery downtown, the man helping me with my food had an actively bloody nose while serving my mac and cheese.   I have nothing against Corner Bakery (or bloody noses for that matter… just not together) but I have only stopped there once in the past ten years, post-call, to get a coffee so I wouldn’t fall asleep on my short drive home.  It’s lost its appeal.

Food is emotional.  Every spoonful is a memory.  Every slice brings you back to a moment.  We don’t just eat to eat, we eat to feel.  And sometimes we don’t eat so we don’t have to feel.  Watching your child turn limp, unresponsive, and covered in hives after eating an egg may, understandably, be enough to make you want to avoid egg, in all its forms, forever.  I mean if an eyelash can cause a nearly 2 decade food aversion, imagine the repugnant relationship one may establish with an egg after witnessing such a devastating event.  I call it post-traumatic disordered eating.  And this is my self-diagnosis.

I’ve seen it manifest itself in many ways.  After a long day in clinic working with two adult patients with new-onset anaphylaxis and shortly after my son’s anaphylaxis to egg, my husband and I went out to eat.  I ordered salmon.  I hadn’t eaten it in a long time but it sounded healthy and light.  As I ate it, I started to think about work, about how fish was one of the top-8 food allergens, about my son’s near-fatal reaction to food, about the new adult food allergy diagnoses I made that day, and suddenly my throat felt tight.  I felt like I couldn’t swallow well.  I kept drinking gulp after gulp of water.  How could this be happening?  Was it really happening?  I didn’t want to tell my husband because deep down I believed I wasn’t having physical symptoms but I needed to tell him because I was definitely having emotional ones.  I was on the verge of a panic attack over salmon that I was not having an allergic reaction to.  We talked through it and I calmed down.  My throat wasn’t swelling.  I didn’t have hives.  I wasn’t going to vomit.  But it was traumatic and it was stressful.

Every time we are out to eat with other parents of a food allergic child, we absolutely have to comment on the fact that we are eating foods that our kids cannot.  They talk about how they feel about their child’s allergen(s) and we talk about how we feel.  It’s the elephant in the room (or more likely, the peanut on the plate) and until we verbalize it, I don’t think that anyone is really able to enjoy their dinner.  We have to talk about it, so we can stop thinking about it.  These internal dialogues can, and do, grow very tiresome.  Then we can choose which foods we will still avoid and which foods we will eat because we don’t get to eat them at home.  At this point, I usually dig into the center of the loaf of bread and pull out a dense, soft middle piece that I will soon cover (smother) in butter.  Then I repeat this, literally, ad nauseum.  This sort of over-compensatory, rapid (and often secretive) eating of food that your child cannot eat is another sign of post-traumatic disordered eating.  (Remember this is not an official diagnosis but one that I have coined myself and frankly, have cornered the market on.)

For our ten-year wedding anniversary, my husband and I went to Table 52, and they served deviled eggs along with these unbelievable cheese buns.  I looked at the eggs.  They looked at me.  I hadn’t had a deviled egg in the 6 years following the boys’  anaphylaxis to egg in a cookie I made for them, but I used to eat them with great joy.  My husband and I looked at each other. We looked back at the eggs.  He said, with a certain level of disgust, “I’m not eating those.”  I said with a certain level of desire, “I won’t either.”  See the difference in those remarks?  He really didn’t want one.  I wanted one but wasn’t going to let myself eat it if the kids couldn’t eat it.  After a few minutes, he was able to encourage me to eat one.  He could see how much I wanted it.  And for the first time since the egg anaphylaxis, I put a deviled egg into my mouth. The flavors.  The aroma.  The experience.   I was transported.  I was a child on Easter morning and a little girl at my gramma’s house.  I hadn’t been back to those memories in many years.  I missed them and eating that deviled egg is what brought them back.

Food does this like nothing else can. It captures all of your senses and literally can put you back in a space and time.  Eating a cashew puts my hand deep into a blue can of Planter’s on an airplane (I know, gasp) to Florida with my family as a kid.  Eating a Butterfinger blizzard brings me to the Dairy Queen in Bourbonnais after early-dismissal from grade school.  I can see my gramma’s hand swirling as she made it for me. Eating an eggroll at a Chinese restaurant drops me in the back seat of our family car with my sister after a trip to TJ Maxx followed by dinner at China Gate.  Our memories are intertwined with food.

Our children’s memories may not be filled with deviled eggs or cashews or blizzards or eggrolls but no matter what food they have to avoid, they will have their own food memories.  Food memories that we have created for them.  They may have Benjamint Bars from Divvies on Easter morning, or Cybele Pascal’s vanilla scones at Christmas or Hanukkah, or Cherrybrook Kitchen chocolate cakes for birthdays.  They will have loads of fresh fruits and vegetables, food of the earth.  Each food with its own smell and taste, color and texture.  Each food tied into its own childhood memories.  See, you are not denying them childhood food memories.  You don’t have to deny yourself them either. It’s good for us to take a bite of the otherwise forbidden foods and let it take us back, every now and then.

We talk a lot about the emotional effect food allergy has on parents, but mostly in regard to our fear over our children eating allergenic food.  I don’t think we talk enough about the emotional toll that eating foods our children cannot eat has on parents.  It’s okay to admit that eating can sometimes be difficult.  It’s okay to have these feelings.  It’s okay to need to work through them.  It’s okay to reach out and ask for help.  The next time you go out to eat, think about what you will order and imagine eating that food before you actually do.  Imagine eating it in happy moderation.  Imagine eating it without regret or guilt.  Work out the kinks and anxieties so when you sit down for a nice (and likely rare) night out with your spouse or friends, that you can do so in peace.  Take a deep breath and do your best to enjoy yourself, nuts and deviled eggs and all.  Bon appetite, friends.  You deserve it.

Sarah | 145 Comments | Permalink
My Stories, Nut-free, Observations

How Did Kale Become Their Favorite?

06/28
2012

Last week, one of my friends asked my kids what their favorite meal was and all three of the boys, without missing a beat, said in unison, kale and spaghetti.  Not only did I swell with pride, I mostly swelled with laughter.  How could I have raised children whose favorite meal has kale as the main ingredient?  I didn’t even know what kale was a year ago and certainly couldn’t have anticipated it would hold such an esteemed position in our household.  Healthier eating (I first wrote “healthy” but I didn’t want you to get the false impression that we never scarf down a bag kettle chips) is definitely one of the blessings that food allergy has brought into our lives.

Kale is a form of cabbage from the family Brassica oleracea.  This family has in it many sibling vegetables including brussel sprouts, broccoli and cauliflower - all unexpected crowd-pleasers (more recipes to follow). When I ran across a recipe a couple of months ago with kale, I thought maybe I should try this kale stuff everyone was raving about.  I would try to transform it into a top 8 allergen-free recipe.  Sometimes this works and other times, it is an epic fail.  By the time I switched the wheat noodles to gluten-free noodles, took out the parmesan and the pine nuts, I realized that I had to basically start completely over.  It was in the starting over that I created this recipe that is now a quick, tasty, healthy family favorite.  I hope that you will see why!

Kale Spaghetti

3 TBSP olive oil

Salt

Pepper

1 bunch of organic kale

1 pint of cherry tomatoes

4 garlic cloves

12-ounce bag of gluten-free spaghetti (or any gluten-free pasta)

In a large pan, heat up 3 tablespoons of olive oil.  When the oil is warm, add in 4 – 6 cloves of crushed garlic.  Let the crushed garlic warm but not brown.

Take 1 small container of cherry tomatoes and cut each tomato into 2 or 4 pieces.  Add the tomatoes to the oil and garlic.  Let the mixture heat up and as it does, smash the tomatoes down with a masher or a fork to get some of the juices out.

This makes a tomato/garlic/oil puree.  Season this puree with salt and black pepper to taste.

After cleaning one bunch of kale, tear the kale into small pieces.  Do not use the middle vein, just the leafy part.  Put one handful of kale into the pan at a time.  As the leaves wilt, you will have more space to add the remainder of the kale.  When all of the kale has been added, place a lid over the pan for 4-5 minutes, stirring occasionally.  This will flavor the kale well and also make the kale and the tomatoes less tough to eat.

In a separate pot, bring water to a boil and prepare your favorite gluten-free spaghetti (we are using Tinkyada organic brown rice spaghetti).  Feel free to substitute with whatever brand or shape of pasta that you so desire.  Once the spaghetti is ready, you can either serve the pasta with a spoonful of the kale/tomato mixture on top or you can put the spaghetti in the pan with the kale, toss and serve.

I made this twice last week, upon request, which was awesome because it is very quick and easy to make.  I had some left over kale so two nights after this photo was taken, I asked them if I could make it again.  Yeah, I was pushing my luck… Enjoy!

 

SAFETY NOTE:  Although this recipe is meant to be top eight (cow’s milk, egg, soy, wheat, peanut, tree nuts, fish and shellfish) allergen-free, I cannot guarantee that all of the products that I have used will remain top eight allergen-free.  I encourage you to always read food labels thoroughly each and every time you use a product as ingredients and manufacturing practices may change without warning. Please omit and/or substitute any ingredients that are unsafe for you or your family members for ingredients that are safe.  If you need help finding substitutions, please let me know and I will do my best to help.  If you have questions about whether a particular food is safe for you or your family members, please contact your physician.

Sarah | 37 Comments | Permalink
Recipes

The Science of Sensitization (or How in the World We Become Allergic…)

05/31
2012

A few months ago, I talked to you about The Science of Anaphylaxis.  We started our exploration of an allergic reaction with a mast cell that had IgE antibody to a food allergen on its surface, learned how allergic reactions are initiated, and ended the conversation with the signs, symptoms, and treatment of anaphylaxis.  But how did the mast cell get that IgE antibody to a specific food on its surface in the first place?  How did the mast cell get primed, so to speak, for an allergic reaction?  How do we become allergic?  Well, we become allergic through a process called sensitization.  So here, my friends, is the foreword to The Science of Anaphylaxis, it is The Science of Sensitization.  We will discuss in depth one of the ways that an individual can become allergic.  I think you are ready for this, but just like the last science post, you may need to read it a few times.  (I had to write it a few times!)

Okay, here we go.  When an individual eats a food, (let’s use peanut as our example again), it enters the gastrointestinal (GI) tract and begins to be digested.  At some point during this process, the tiny peanut protein passes through the wall of the GI tract.  Through a series of events, the protein finds its way to cells in the blood stream and lymphoid tissues.  This is where the peanut protein stumbles upon a type of cell called an antigen-presenting cell.  Antigen-presenting cells do exactly that – they present (or show) antigens (allergenic food proteins, for example) to other cells.  An antigen is a foreign substance that initiates an immune response by the body.  This immune response usually includes the creation of antibodies that help to rid the body of this foreign substance.  Many types of cells can act as antigen-presenting cells.  In this example, the antigen-presenting cell will be a B cell.

When a B cell (seen in blue in the figure below) encounters peanut protein, it takes the protein from the outside and internalizes it.  It processes the protein and then puts it on a molecule that resides on the surface of its cell (see the B cell with peanut protein on its surface molecule below).  The peanut protein on the surface of this B cell will then get presented to a T cell (shown in green).  Believe it or not, this T cell has on its surface a peanut-specific receptor, as well as receptors for so many other proteins.  When this receptor on the T cell sees this peanut protein on the surface of the B cell, the cells realize that they have something in common and they begin to communicate.  The conversation between the B cell and the T cell is intense and complicated. There is an automatic connection between them.  They come into contact with each other’s surface molecules and engage in other receptor-based physical interactions.  They also spew out cytokines (chemicals) as another way to converse with each other and boy, do they have a lot to say!  The T cell specifically releases IL-4 and IL-13 and these cytokines cause the B cell to undergo several changes.  These changes eventually lead to its secretion of peanut-specific IgE antibody represented by the blue Y’s in the figure below.  (IgE stands for immunoglobulin type E.  It is a type of antibody that aids in ridding the body of parasites and plays an important role in allergic reactions.)

This is tough.  Try picturing the B cell and T cell in the figure above like two people.  They meet each other in the middle of a huge crowd and they have instant chemistry. They recognize something in the other person that they are attracted to.  They share a good handshake, a strong hug.  They have a common interest in food.  They talk easily.  They effortlessly exchange information. Their interaction ultimately is so powerful that it changes their lives forever.  This is romantic stuff.

Now back to the science… we left the B cell churning out peanut-specific IgE antibody while under the influence of IL-4 and IL-13.  It has the ability to secrete antibody specific to whatever food protein that it originally encountered.  It could be egg, wheat or cow’s milk, for example.  Remember from The Science of Anaphylaxis that an antibody looks like an arm with a hand on the end (shown in blue and attached to a mast cell in the figure below). These peanut-specific IgE antibodies are now flowing in the blood stream in an attempt to find and bind to high-affinity (very sticky) IgE receptors on mast cells.  These IgE receptors on mast cells are perfect, sticky landing pads for the circulating IgE antibodies.  When the peanut-specific IgE antibodies bind to the IgE receptors on mast cells, this marks the completion of the process of sensitization.

The process that I described occurs in atopic individuals (those with a propensity to become allergic).  In the case of these allergic and now-sensitized individuals, once the mast cell has the peanut-specific IgE attached to its surface, it is primed for a reaction the next time the peanut protein appears in the body.  This means that the next time a peanut-sensitized individual encounters a peanut, the signs and symptoms of an allergic reaction or anaphylaxis can occur.

Now I am going to confuse things a bit but only in hopes of answering some questions that may have come up for you.   It is good to keep in mind that the process I have described does not end in sensitization in non-allergic people. An individual without a genetic predisposition to allergy will likely undergo what is called, tolerance, instead.  They will have similar cellular communications that result in that individual’s ability to safely eat (tolerate) a potentially allergenic food.

Imagine it like this…  When two people meet, there is a better chance that they will simply and happily co-exist with each other (or tolerate each other) than there is a chance that they will instantly hit it off.  These two people may exchange small talk but they do not cause a radical change in the lives of one another.  They don’t move the other one into action.  Tolerance is what normally happens.  Allergic sensitization is the exceptional response.

You should also know that there are some individuals who undergo sensitization but do not react the next time their cells encounter the allergenic food. They are not clinically allergic.  See, I told you this was confusing!  These individuals go through this process but do not react to foods. This group of individuals is fascinating and likely holds a key piece of information in the search for the treatment or cure of food allergy.  I mention this in order to teach you that not every positive blood test indicates that an individual will have an allergic reaction to that food.  So think twice before you ask your physician to draw extensive “panels” of blood tests (food specific IgE antibody levels, also referred to as RASTs or ImmunoCAPs) to foods that there is no history of a reaction to in order to diagnose food allergies.  This practice can lead to an over-diagnosis of food allergy and thus, an unnecessary over-avoidance of food.  It can also lead, perhaps, to the avoidance of food that the person was eating safely just the day before.

I hope that piece gives you a deeper understanding of how some of us become allergic.  I have left many of the nitty-gritty details out of this explanation because it is simply not easy material, but I am confident that you will be able to get the big picture. If you want to work through this whole story, read this post and follow it up with The Science of Anaphylaxis.  It will bring the allergic puzzle together for you – sensitization followed by allergic reaction.

Please share this post with your friends!  Even if they don’t have food allergies, the process of sensitization is basically the same for those people who are allergic to pet dander, tree pollen, ragweed or other environmental allergens. And we all know someone who is sneezing and rubbing their eyes as spring draws to a close and summer grass pollen fills the air!

Please sign up for email updates to the right, if you haven’t already.  Also, if you so desire, follow The Allergist Mom on facebook and twitter – links can be found on upper right of site in the little gray circles!  Thank you!

Sarah | 59 Comments | Permalink
Observations, Science

Sibling Revelry and Rivalry

04/27
2012

 

When we walked into the house after Lucy’s yearly appointment, her brothers (Sal, age 6, and Gino and Milo, both age 5) clamored to hear the news.  Dressed in her mint green owl shirt, little 2 year-old Lucy looked admiringly up at the boys and said one word, “Egg”.  Sal, who has no known food allergies, gave her a big kiss on her cheek.  Gino, who required 2 doses of injectable epinephrine after he ate egg and who probably has reacted to more foods than he is able to eat, ran to her and threw his strong, tan arms around his sister. “That’s great!  You get to try eggs!”  He couldn’t contain his smile.  His joy for her was palpable.  Milo, who is only allergic to egg and soy, sulked.  There was no celebratory embrace from him.  He shuffled to the family room and sat at the edge of the couch with his serious eyes focused away – away from what he wanted to happen to him, away from the egg talk.  I sat next to him.  “It’s not fair, Mommy.  It’s not fair that she gets to eat egg and not me.”  He couldn’t contain his tears and so they flowed.

I brought Lucy to my mom’s house the morning after the appointment and in a clean pan, my mom scrambled up a fresh egg for Lucy and served it to her in her pink bowl.  I fed her a bite that was smaller than a grain of Kosher salt and we waited.  There were no hives.  There was no redness.  There were no symptoms.  I let her have another small bite and we waited.  We repeated this until she had eaten a good amount of that pale yellow scrambled egg.  She was fine.  She was happy.  She was not allergic to egg.  I breathed a deep sigh of relief and gratitude to the food allergy goddesses but then I felt my heart sink a little.  How would the boys react to this?

I picked up the boys from school later that day and I told them that Lucy ate an egg and that she was not allergic to it.  As the boys walked past her car seat to get into their own, Sal rubbed her head in a way you would expect the oldest brother would and told her she did a good job.  Gino gave her a tender high-five followed by a tickle to express how happy he was for her.  Milo went straight past her and buckled himself into his seatbelt.  Gino asked Milo if he heard that Lucy could eat eggs.  He confirmed that he did indeed hear the news.  Sal asked him why he didn’t smile at her but Milo didn’t have an answer.  I wasn’t sure he really knew the answer.  He is only 5, after all.  He wasn’t mad at her for being able to eat eggs.  He was only able to focus on the fact that he wasn’t able to eat them.  I could sense his frustration and conflict.

As I thought about the twins’ differing reactions to this news, I contemplated if their individual food allergies played a role.  Gino, who may never be able to eat wheat, milk, egg or many other foods, reacted selflessly.  He knows that this opportunity may not present itself to him any time soon and still he was able to feel genuine delight for his sister’s stroke of luck.  He has learned through living with his food allergies to be happy for others even if you can’t have what they have.  He has learned to accept that his life is distinct from everyone else’s and in doing this, rarely compares himself to others or feels cheated.  Milo, however, sees himself as the twin who is hardly allergic to food.  He relates more to the food allergy-free world.  His more self-focused reaction was motivated by his own intense hope to lose his egg allergy.  He feels like he is just shy of being like “everyone else” so his competitive drive and his need for equality are intense, often creating a strong sense of rivalry.

I compare these differing reactions to a tennis match.  If you are defeated in a match with a score of 6-0, 6-0, 6-0 then chances are you are able to acknowledge that your opponent won fair and square.  You didn’t stand a chance against him.  In these games, usually one player applaudes the other for his prowess, and moves on, accepting the outcome.  This is in stark contrast to the player who loses a match 7-6, 7-6, 7-6 with every game a battle of deuces and every set a battle of tiebreakers.  The loss of that match may cause one player to dwell on a serve he should’ve made or a call that wasn’t right or a backhand that had a bit too much muscle on it.  This kind of match leaves the loser just barely out of the competition.  It leaves him hungry for another round.  It leaves him knowing he could easily be the winner next time.  See what I mean?  It’s like the more foods that allergy stacks against you, the more likely you are to accept your fate.  The fewer foods that are seen as victorious opponents, the more likely you are to feel you should be able to overcome them.  I am obviously not equating having food allergy to losing but after years of playing tennis matches like the ones I have described, I have felt how I think Gino and Milo are feeling.

We also left Lucy’s appointment that day with a future milk challenge in place.  Lucy had anaphylaxis to cow’s milk at 4 months and like her brother, required 2 doses of injectable epinephrine in order to decrease her airway swelling.  So as excited as we are for the chance to knock yet another allergen off of her avoidance list, I am sick over the thought of her having a reaction.  But I am also a little sick over the thought of her being able to eat cow’s milk. (I cringe as I write that because it is almost too honest to share.)  How could I possibly feel that way?  The truth is that I am concerned how her brothers will feel.  The kids find refuge in having shared food allergens with their siblings.  There is something safe about that.  Something sacred.  And not having a food allergy that another one has gives the one without the allergy a very important role as a protector.  See how complicated this gets?

Well, if she is able to eat cow’s milk, Sal will be thrilled even though he does pride himself on keeping an eye on Lucy whenever there may be milk around.  There will be an adjustment for him because he takes this role on with intense and instinctive responsibility.  I know how Milo will see this.  He is not allergic to milk so there will be no sense of rivalry there; he will get the chance to celebrate with his sister and boy, do I hope that he has the opportunity to feel this emotion.  It is so important for siblings to feel pure excitement for another’s success.  It’s that sort of empathy that forges long-lasting friendships between brothers and sisters.

But what about Gino? This is where my sadness comes in.  With Lucy’s ability to eat cow’s milk, the gap begins to widen between Gino and his siblings.  As happy as we would be for Lucy to have one less allergen, Gino will also have one less ally in avoidance. Right now, they make a great team.  At Starbucks, they both order an orange juice, while the other two drink their cow’s milk. If Milo and Sal get a cookie, Gino and Lucy share their own safe cookies.  Her milk allergy plays a critical role in the balance of power among the siblings.  Will Gino handle a milk victory as well as he did the egg? And what if he can’t?  That possibility breaks our hearts.

Of course, I want few things more than for Lucy to be able to eat cow’s milk with no reaction.  But the truth is, with that ability to drink cow’s milk comes a change and it will be a change that has a lot of emotional strings attached. It’s a change that I desperately want for her, but one that I don’t know if I want for Gino.  Although chances are that if she is able to have cow’s milk that he will graciously throw his arms around her and revel in one more food allergy victory with her – because he has learned not to see his limitations as punishments, because he has learned to be happy for what he has, and because, well, that’s just the kind of kid he is.

Here’s hoping that next Tuesday afternoon I get to see that victory hug.

What a perfect moment that would be…

Sarah | 46 Comments | Permalink
Family, Observations