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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66 Responses to The Food Challenge Challenge

  1. Erin says:

    This one really hit home, as we use those terms in our house without thinking twice about it re: our almost 3 y/o’s Eosinophilic esophagitis…. Our (hopefully) non EoE kinder daughter talks to anyone about his “fails”….. “MOM, he has another dirty diaper….. Does that mean that potato chips are a fail”….. “No he cant have carrots, he failed it and it hurts his tummy and esophagus”. I definitely need to be using different terms. That made me so sad to read Gino thought he was a loser….. :( . EGIDs and allergies are so frustrating and upsetting. You’re doing a good job mama….. And thx for the thoughts on the terms…. ESP as we’re wading through the possibility of my daughter having an EGID….

    • Sarah says:

      Thank you, Erin, for your honest comment. The word affects everyone differently. I’m sure that there are some kids that it doesn’t bother but having the experience that I did, I just try not to use it. As an allergist, I’m used to using that terminology and reading those words in the literature, so it something I constantly need to remember to avoid saying. We can all just do our best! Have a great day!
      Sarah

  2. Jennifer says:

    Good point! It is not just allergists either. We had this experience at the eye doctor. We returned because the script the eye doctor gave my daughter wasn’t working. He said to us, “She’s just so bad, it’s tricky.” He meant to get it so she could read easily without sacrificing her distance vision, but she heard the bad. He looked up and happened to see her face. He immediately realized and quickly said, “Oh no, no, no, you’re not bad. It’s that the way your eyes work makes it hard for me to decide the right kind of glasses.” I was so glad he looked up and noticed because I could not see her from where I was behind the exam chair.

    • Sarah says:

      Jennifer,
      Excellent point. All physicians need to be careful about children internalizing the words we use in reference to them. Thank you for your comment!
      Sarah

  3. Erin says:

    We use those terms all the time re: EE food trials with my toddler…. my kinder kid the other day…. “mom, (about toddler) has ANOTHER gross diaper…. does that mean he’s failed potato chips?” She’s in KINDER…..so either we talk about passes and fails too much, or she’s too smart. I feel horrible for you to have to hear him say that….. think we’ll be changing our terms. None of this is easy, is it….. and our kids really do teach us a lot of life lessons, don’t they….. hugs to you. xo

    • Sarah says:

      It isn’t easy but we all keep learning so much about food, ourselves and children every day. There is a blessing in that. Hugs back to you!
      Sarah

  4. Colleen says:

    Milo, you are a hero!

  5. Jamie says:

    thank you for illuminating yet another tricky part of raising children with FA. I avoid the word “fail” with Max when we talk about his baked egg challenge–his body can’t tolerate them, and that’s all there is to it.

  6. Oscar's Mum says:

    Thank you for sharing this. It’s definitely made me look at things differently.

  7. JACKI says:

    My son is soy allergic with peanut and other things….Even if he wasn’t anymore- I wouldn’t want him to eat it. I wish all his allergies to not be a life/death issue that is all. But after reading the book the Unhealthy Truth by Robyn O Brien- we will be all soy free no matter what it takes. It doesn’t make sense to feed the rest of my family soy knowing what I am learning nor have other foods to separate us in this home.
    I will figure it out and make what I need to from scratch and freeze. We just bought our own Cuisnart Icecream maker to over come the soy in our icecream.
    He is not a loser; and if anything he will be much healthier for it.
    ** Can he tolerate milk/eggs because as I call around to even organic farms the basis of feed (majority is grass) but soy is in chicken feed and cow feed.**
    Good Luck little man…your not alone. Be Blessed in it.

    • Sarah says:

      Thank you for your comment, Jacki. I have read some articles by Robyn O’Brien and she does makes some excellent points about food sources.
      Have a great day!
      Sarah

  8. Charlene W says:

    Loved the post…just like all the others. You enlightened me..I have a super-tough 9 year old with many food allergies…all top 8 and then some…we did a soy challenge a couple of years ago where we “failed” after the initial dose of soy. It was heartbreaking for me as his mom, but he seemed to take it in stride. Seldom do I give a thought to the possibility of him internalizing those feelings. All the professionals that meet him tell me he has amazing coping skills, now you have me thinking about making sure that internal “emotional tank” is getting emptied out regularly. Much love and prayers sent to all the parents reading these…and living the “FA life”.

    • Sarah says:

      Thank you, Charlene, for your thoughtful comment. My other son has never showed us that he felt badly about himself after a “failed” challenge but right, do the words that we use just sit in their minds and eventually will affect them? Maybe. Maybe not. It’s at least good to talk about with them.
      Have a great day, Charlene!
      Sarah

  9. Stacey says:

    Excellent post, once again–and heart breaking as I relate too well to this post. My 4 y.o. son has FPIES to soy also. He has had 4 challenges to possible FPIES foods and more than anything, he remembers the IV. He has a an IgE shrimp challenge next month–and while discussing it–the first question he asked was “will I have to get one of those shots that they leave in and tape to my arm around that board?” It’s heartbreaking when these are the fears of our babies so they can try a new food–and we never know what they are really feeling inside about it.

    This post comes at a perfect time as we prepare for the shrimp challenge. I will definitely be using the words “able” and “unable” instead of pass or fail. Thank you for clearly showing us one more way to express compassion to our FA children without creating a bubble around them. Your posts bless my food allergy mom heart more than you know.

    • Sarah says:

      Oh, Stacy, thank you so much. To know that you feel blessed by my articles is a blessing to me. Milo actually told the allergist that he didn’t want to try soy again this fall because it wasn’t fair that his brother didn’t have to have the needle in his arm the whole time. They really do hate that… I hate it too.
      Thank you for reading and for your thoughtful comment.
      Sarah

    • Sarah says:

      I hope the shrimp challenge goes your way and that he is able to eat it happily. Let me know. I’ll be thinking about you guys!
      Sarah

  10. Ambar says:

    He’s quite a trouper. I think you should keep him! :)

    Ambar

  11. Barbara says:

    Thank you so much for your heartfelt share of wisdom. We haven’t had a food challenge yet. My son is 4.5 and allergic to Milk, Soy, Eggs, Tree Nut, Peanut, Shellfish. We know he has an anaphylaxis response to dairy. Soy is intense hives and stomach discomfort for days, the others he tested positive to and has never tried. I will try to keep this at the forefront of my mind as the first challenge is a month away, and hopefully his body will be able to tolerate egg, but if the cells are unable to, He will definately be a trooper for trying and a winner for being brave (braver than Mom)!

  12. Jennifer says:

    Thank you for another amazing post! You have an unbelievable gift to so eloquently capture those moments and feelings we all experience but are never able to adequately express ourselves.

  13. Lisa says:

    When my 3 year old started to feel sick at his wheat challenge he didn’t want to go on… He said, “I don’t want to eat wheat anyways.”

    This opened my eyes to the fact that as far as he’s concerned, he does get to eat a lot of great foods and he doesn’t need wheat to be happy.

    You’re right about that word in reference to a food challenge. I don’t like it at all. It’s not a fail, it’s just a fact: this food still makes you sick.

    • Sarah says:

      Lisa,
      Thank you for reading and for your comment. So true, they don’t necessary feel the same “loss” as we do…
      Excellent point.
      Take care,
      Sarah

  14. Lauren says:

    What a wonderful article! I have two sons both who have anaphylaxis to multiple foods. We don’t struggle with FPIES but we’ve done food challenges and have failed all of them. My boys are still young but listening to you tell your story and your concerns as a mom…it’s exactly what I feel and fear as my boys grow older. My oldest (3) is already talking about our retesting that we have next week. He is more and more aware of his food allergies and what that means/could mean. It’s hard enough for our kids to fit in everywhere they go which can break their little spirits but then you add the medical piece to the equation and if not handled correctly can bring them down even more. I constantly feel it’s a tight rope that I’m walking when talking to them about their allergies and to others about their food allergies (in front of them). Just recently I’ve begun to realize that my oldest is intently listening to more and more of what I’m saying to others about his allergies. This has brought about a slew of questions and emotions (on both of our parts). Thanks for your blog and for sharing your story along the way. It’s so important for us moms to be able to learn and share with other moms going through a similar day to day battle. You are a wonderful mom and Milo is blessed to have you.

    • Sarah says:

      Lauren,
      Thank you very much for taking the time to write this comment. It is sometimes hard to remember that as they get older, their understanding changes suddenly! Always good to check in with them to see what they are understanding.
      Take care and thank you for reading!
      Sarah

  15. Maria says:

    Another EoE and EpiPen carrying mom here. I have not been able to read your post all the way through in one sitting, but I have read bits of it at several times. It is just too emotional and hits too close to home for me and my 5 year old. We trial foods weekly. We have more “fails” and we are going to be having more “unables” soon. I am crying just typing this. Thank you. Just…thank you..

  16. hls says:

    As a mother of 3 FA kid (2 that currently have egg @ peanut since birth)i have educated my kids with the fact that everyone is (born) different, everyone has strengths @ weaknesses..our bodies are all different. My daughter struggles with math, my oldest son, egg doesn’t agree with his body, my younger son has ear issues as well as FA, my sister is partially deaf & so on…We are all special in our own ways- that’s what makes us special. I am that mom that has watched her son “react” to a food challenge & epi pen was used, its heart breaking, frustrating, tearful etc… FA is a just a way of life for us- keep up the good work on your informative, educational & personal info/ topics. And good luck to FA kids & moms, we are all in this together!

    • Sarah says:

      his,
      Thank you so much for your positive comment. Thank you also for reading and sharing your take on things. Appreciate it.
      Sarah

  17. Jim says:

    One of my biggest worries for my son is related to what you are talking about. He is allergic to peanuts and tree nuts, in addition to mild asthma, and we spend so much effort worrying about his safety and protecting him from crumbs that I fear he will think of himself as defective and incapable because he can’t do some of the things other kids can do. One of my biggest priorities is to find ways to allow him to achieve safely, especially physically, because I want him to think of himself as capable, not disabled. This can be difficult to do while vocally advocating for protection for his “disability.”

    • Sarah says:

      Jim,
      Exactly. When they are young, I advocate more behind their backs… As they get older, I will continue to include them more. This way they have a greater understanding and are able to say, I need these accommodations because of my disease, not because I have anything wrong with me… It is definitely a challenge.
      Thank you so very much for sharing your thoughts.
      Sarah

  18. Christina says:

    I just found this article and your blog/Facebook page via the FPIES Foundation. I have a 9 month who we are struggling through food trials with at the moment. We use the words “pass” and “fail” like they are no big deal every day in our house but I’m going to find new words to use after reading this. He’s learning so much every day and I don’t want him to feel like a “failed” trial is the same as him failing. Your son is very brave for challenging soy and continuing through other challenges despite his body rejecting them. Thank you for writing this!

    • Sarah says:

      Christina,
      I am so happy you found my blog and truly hope that you are enjoying what you have read. Thank you for your comment! Yeah, might as well change the words you use when he is young! I still have to correct myself as I hadn’t thought much about the terms we use until my son called himself a loser… Have a great night!
      Sarah

  19. Jennifer says:

    Wow, that just breaks my heart! Allergies are so difficult as it’s just another way for a child to feel different or excluded. My son has recently started asking me why anyone would make food with allergies in it. He just doesn’t understand why anyone would possibly prepare food that could hurt him. He’s four. I suppose he’ll grow to understand, but for now it makes me sad.

    Yes, allergies make our kids different, but they don’t define them. If anything, dealing with allergies will make them stronger in the long run.

    Jennifer
    http://itchylittleworld.wordpress.com

    • Sarah says:

      Jennifer,
      Some of the things they say are so hard to hear. My son just spent the weekend with his baby cousin and asked his uncle what the baby was allergic to. When his uncle said that the baby didn’t have any food allergies that they knew of, Gino smiled and said, “That’s good. That’s good”. :( I love that kid. And I think you’re right, they are strong, beautiful children.
      Sarah

  20. Charl Rae says:

    Oh, my heart aches… words and emotions have such powerful impacts on a child’s identity and self-perception. When a food challenge is referred to as “fail” by a nurse or physician and when another child at school refers to the allergic child’s lunch as “gross” or weird”, it hurts, it wounds. As a parent, I am still surprised and disappointed when people (especially doctors and teachers) who I have heard promoting “sensitivity and equality” are, themselves, so insensitive…. Can only hope that I am using these “teaching moments” wisely to help my child be more compassionate.

    • Sarah says:

      Charl,
      I am sure you are using those moments just perfectly. Empathy is one of the most important qualities that you can instill in your children… at least that’s how I feel!
      Thank you for reading!
      Sarah

  21. Michelle says:

    my 3 year old has a peanut challenge coming up next Tuesday. a VERY good reminder to me of how to present the situation to him and his sister. THANK you.

  22. Kristy says:

    Thanks, Sarah, for another reminder of how sensitive and smart our kiddos are to all of this. Our son is 4 and just started preschool again this week. His food allergies have once again been put in the spot light (I had to meet with his teachers, send in his medicine, he brings his own snack, etc. ) and he’s REALLY noticing it all this time around. We definitely don’t hide his allergy and want him to advocate for himself but have to remind ourselves that he is always listening and always feeling like he’s a little different than the other kids. He’s really started verbalizing his feelings and it’s heartbreaking yet teaches me something new every day! Thanks for another great post!

    • Sarah says:

      Kristy,
      You’re welcome. Yes, the beginning of school really highlights food allergy which is why I am always happy to get into the swing of things! I mean it is always on the forefront of our minds but at least the talking and educating and planning is a bit less once the year gets going.
      Thank you for your comment, Kristy. Have a great night!
      Sarah

  23. Robyn says:

    Yet again, I am in tears. My son is 2 1/2 years and has yet to pass a food challenge. And all we talk about is how he “failed” another food challenge. I never thought about how that word could make him feel. Thank you for all your knowledge and life lessons! I will be more aware of how I talk about his food challenges from now on.
    Good luck with future food challenges!
    Robyn

    • Sarah says:

      Robyn,
      Good luck to you too! I still slip and use the old jargon of “pass” and “fail” but I never stop trying to eliminate those medical words from my conversations with my children. You are very welcome… thank you for reading and for your comment.
      Sarah

  24. Abbie says:

    Fantastic article. So important to always reinforce positivity in our little ones. Thanks for yet another insightful portrayal into the mind of a child with food allergies. You rock, Milo!

  25. Anne says:

    Great post! Well written and heartfelt. I have clinical experience in Allergy and have often been the only health care professional involved in assisting patients with food challenges that also has a highly atopic son – including food allergies (e.g. h/o of textbook anaphylaxis after a lick of peanut butter). As such, I felt like I was always trying to help everyone else on the team to understand parental/patient perspectives during daily clinic activities. During food challenge procedures, I never used the words pass/fail to patients or parents. Never. I didn’t like the jargon then and still don’t. Words are powerful and such stark verbiage when communicating with patients is not necessary and can be harmful. I’ve been with parents when they cried over their children going through a food challenge only to find their child’s body wasn’t ready to tolerate the offending trigger. Much needs improvement in Allergy to better serve food allergic patients. There are many gaps in care – often due to clinic models that are provider- centered versus patient-centered. I hope the future brings better predictive diagnostic testing to avoid doing challenges on little ones whose immune systems truly are not ready to consume allergens without reactions. And I hope Allergy clinic teams learn to be more careful with their words around patients. Developing young souls are at stake! Thank you for your article – may every Allergy clinic team across the land read it.

    • Sarah says:

      Anne,
      Thank you so much for your insight and for sharing your perspective on this topic. It really is an interesting point of view! I hope the medical field becomes all-around more careful in their use of jargon with their small patients. Thank you for reading and for your comment.
      Sarah

  26. Lisa says:

    Thank you so much for this I am printing this and taking it to all our doctors. My amazing daughter has FPIES to rice and the first time I heard of a food challenge I cringed. It pledges me a lot when I think of all the horrible things that go into it and possible outcomes. I fear for the day in two and a half years form today when we have to do our rice FPIES challenge. I have to say when the doctor said she failed and had FPIES I was the one with shrugged shoulders and tears with a broken heart.
    Thank you for this.

    • Sarah says:

      Lisa,
      It is my pleasure to share this story with everyone. I wish I had been able to hear it before my son had this experience so I thought I should share it with all of you.
      Thank you for reading and for commenting,
      Sarah

  27. Thomas, your faithful blog reading nephew. says:

    Just read this blog post… I know how competitive your boys are! Maybe you could look up professional athletes who also have similar food allergies and remind them that whoever it is has the same eating issues! I’m sure they’ll love to hear that. I bet you anything if they heard Jay Cutler (not saying he does have an allergy) cant eat soy they’ll feel like champions! (which we both know they already are!) Just a thought. Much Love!

    • Sarah says:

      Thomas, my faithful blog reading nephew,
      You are definitely onto something here! I am going to start doing some research. Thank you for always being so careful and so inclusive with the boys. I know how much it means to them. It means so much to me and Uncle DJ as well.
      Love,
      Aunt Sarah

  28. Danny says:

    Great article. He is such a tough and spirited and loving and good boy…..fail should never be used to describe him or any child. Maybe God puts people like Milo in our lives to remind us of the blessings of health we sooooooo take for granted. He is an inspiration and hero to me.

  29. Carrie says:

    I’m so sorry that soy still isn’t good for Milo. He sounds like an amazing little guy!

    I just started blogging about our FPIES journey after my 7 week old son was taken by helicopter to a Children’s Hospital in shock. That’s in addition to m y 2 year old having MPI and an IgE Egg allergy! We’re understandably just getting our feet wet in this world, but I have to tell you that your blog (and other allergy Mom blogs) are incredibly helpful to those of us still new in this world. Even better, your posts are so beautifully written they are a pleasure to read.

    This one, especially, touches me because my littles are still too little to truly understand the verbage we use, so you’ve shown me to change the way I refer to foods NOW, before I cause any emotional harm to them down the line.

    Every little thing I can do to make their food world easier to bear is worth it, in my mind, because the more I read and learn, the more I see how rough the road ahead of them might be.

    Anyway, thank you for writing what you do; I always look forward to your posts.

    • Sarah says:

      Carrie,
      Thank you for your comment and your kind words. The more we can do to support each other, the better off we all will be. Our introduction to FPIES was so scary. I thought he just got a really bad flu… I hate to think of sick he really was…
      Take care and thank you for reading,
      Sarah

  30. RM says:

    Tell Milo to hang in there. My boy would also fail a food challenge to soy as well. He sneezes and sneezes after having it, among other things. He also has 6 food allergies and pretty bad allergies to cats, dogs, other animals and many plants and grasses and trees. I know you are an allergist, but would you ever consider looking outside of the box to help his immune system? My son’s allergies were really helped by low dose naltrexone, an immune modulator. He now can have almonds without a reaction, and can cheat a bit with dairy and gluten. He is 8. He also went from allergy attacks most days and waking up sneezing and fatigued to only a few sneezes a week. The only side effects have been night time wakings on occassion, and vivid dreams. I am so glad we decided to give it a try.
    I wish Milo and your other children the best of luck, and I hope they conquer all their allergies. No soy is no big deal. It’s not even that good for you anyways.

  31. Poker Chick says:

    I’ve always hated the “pass” or “fail” language too. We never used it. We just say it worked or it didn’t. That de-personalizes it.

    When our daughter did an egg challenge, we told her before that if she was still allergic to eggs (that’s the language we used “still allergic”) that it would be no big deal. We’d just keep doing everything that we were doing and we were managing great – she’s never had them and all her favorite foods are egg free. And if she wasn’t still allergic to eggs then we would slowly start trying new things and taking it a little at a time.

    When she “failed”, it was no big deal. It was hard watching her body in pain during a reaction, which is scary even in an allergist’s office, but it was no big deal after that.

    I’m sorry your son had such a bad experience. He’s lucky to have a mom who cares so much.

    • Sarah says:

      Poker Chick,
      Thank you so much for sharing the terminology that works for you and your family. Right, you are “still allergic” or “not allergic anymore”. The less personal the terms feel, the better.
      Take care and thank you so much for reading.
      Sarah

  32. Haley says:

    This post made me tear up a little. I can just see my 5 year old son thinking he was a failure for not passing a challenge. He’s never been food challenged as his numbers (and accidental exposure reactions) have proved he’s not even close to ready. But I will remember this post if we ever reach a day where he can be challenged. Thanks for a great post and a great reminder all around to watch the words we chose with our kids.

    • Sarah says:

      Haley,
      Thank you so much for taking the time to read and comment on this post. I hope that Milo’s reaction to the term “fail” reminds all of us to remember who is listening.
      Take care,
      Sarah

  33. Sarah C says:

    Poor little guy… Most of my reactions involve the same symptoms, without going into too much detail on that unpleasantness. BUT if it helps give Milo hope, it’s something that has gotten so much better with age in the sense that while I am undeniably anxious when forced to eat out (it’s not a treat at all, and probably never will be), I almost never regret that I cannot eat my allergens. It’s not a temptation in the slightest. People think I have massive amounts of willpower, but while there certainly is a great deal of personal discipline involved, it’s really not so hard when you consider the consequences. He’ll come to see that he is so far from a “failure” – the willpower he has as a little kid, who may know but not quite fully understand, is astounding. All of your kids are very strong and it’s so great to read about them supporting each other with encouragement!

    • Sarah says:

      Sarah,
      Thank you for your comment. It’s so important to hear from an adult with food allergies. Whenever someone says to me that my kids must really want to eat a donut, etc. I always say the same thing you alluded to… Not really, they know how they will feel afterwards. I’m so glad that you confirmed my suspicions. Thank you for reading. Have a great night!
      Sarah

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