Food Allergy Death Talk

10/15
2012

It was a gorgeous fall day for the Food Allergy and Anaphylaxis (FAAN) walk in Chicago.  The kids were busy collecting allergen-friendly food samples and coloring pages.  There was music playing and the kids packed the stage to dance together.  They felt a common bond with the other children there.  There was excitement; they felt special in their sameness.  Then the music stopped only to have this afternoon punctuated by a story they will never forget.  This fun-filled day was put to an abrupt end as a mother was about to share the very painful and tragic story of her daughter’s death from anaphylaxis.  Her daughter had eaten cow’s milk contaminated french fries from the school cafeteria and had a significant delay in the administration of injectable epinephrine.  This mother was articulate and overflowing with a strength that most mothers could not possibly possess after the death of a child.  She is a warrior against food allergy related morbidity and mortality and she has helped to shape and fashion a much safer world for children with food allergies.  This post is in no way meant to detract from her story, from her daughter’s story, but instead it is meant to highlight what her words meant to my children, and what they may have meant to your children, whether you think they heard them or not. Chances are they actually did hear her heartbreaking words and they took them deep into their ever-maturing but tender young minds and they tried to process what this little girl’s story meant for them.

The night following the walk, as I sat on the edge of Milo’s bed, he said, “I had a nice day but I didn’t like that story of the little girl who died from her food allergy.  It was the only bad part.  It was too sad.”  I was surprised he had listened.  When I heard the mother begin to tell her story, I tried to distract my 6 and 7 year-old children.  I encouraged them to open their Enjoy Life cookies or look through their bag of goodies but obviously that hadn’t worked and their little ears heard it all.  I agreed with him that it was a very sad story but I told him that he didn’t have anything to worry about.  He fell asleep while I rubbed his head, reassuring him that everything would be okay.  And I hoped that this would be the last of the food allergy death talk.

The Monday morning after the walk marched on as usual.  The house was hectic and my husband and I took turns begging the boys to get dressed, find their shoes, and brush their teeth.  When I showed up at school during the lunch hour, I overheard Milo telling some friends at his table about the walk and how there was a very sad story about a girl who died from her food allergy.  This is at a table of children with food allergies.  I swept in and reminded everyone that they all make good, safe choices about the food they eat and they have their medications with them all the time and that nothing bad is going to happen to them.  They looked at me like they believed me or at least like they wanted to believe me.  And I hoped that now this would be the end of the food allergy death talk.

A few minutes later, a second grader with food allergy who walked with us that Sunday, came in the cafeteria.  He walked right up to me, no smile in sight, and said, “Dr. Romano, that was a sad story about that girl yesterday.”  I called his mom right away to share what he said and what I told him in reply.  She told me that after the walk he couldn’t stop talking about how happy he was that didn’t eat food from the school cafeteria and how worried he was about peanuts getting into his safe food.  This story had hit too close to home for these young children and their minds weren’t mature enough to process all of this.  These kids felt like they knew her.  She was in school, just like them.  She was allergic to milk, just like them.  She loved french fries, just like them. They too may die then, just like her.  My friend and I both hoped that this would be the last of the food allergy death talk.

In the car, after picking the kids up from school, Gino told me that Milo wrote about the girl who died at Writer’s Workshop and then shared the story with his class.  He also shared that they sent bubbles up to this little girl in heaven, in her memory.  He was dealing with this as though we had taken him to another child’s funeral. Gino told me that the teachers looked sad, even demonstrating how one of them turned her lower lip outward in a frown.  Milo then stated confidently, “Mom, I will not die from my food allergies.”  I quickly and fiercely agreed with him.  Then I looked in the rearview mirror and made eye contact with Gino.  He looked at me with his huge brown eyes that were clearly holding back tears and said, “But I could die of my food allergies though, right mom?”  I answered the same way as I would answer if he asked me if he was going to get hit by a car while crossing the street and die.  “There is no way you are going to die from your food allergies, Gino.  There is just no way.”  To which he sighed in relief.

My oldest son, Sal, shared with me that he had been feeling worried that his brothers would die from food allergy but that he was trying not to worry because he and everyone in our family know how to use the EpiPen.  Sal then suggested that he redo second grade to be in the same class with his brothers next year so that he could be sure they would be safe at school.  I felt overwhelmed and honestly, a little angry that we had to have this conversation. This wasn’t my plan to teach them about the realities of dying from food allergy in first grade.  I felt regret that when the story started that beautiful Sunday afternoon that I didn’t follow my gut and walk away with them.  I felt I had let them down, that I didn’t protect them from a truth that they were too young to hear, to young to understand.  Then two-year-old Lucy yelled over the boys that it was her turn to talk.  We all quieted so she could participate in the drive-home-from-school talk.  She said through an enormous grin, “My blallet teachah died fom eating a chocit bah”.  For some strange reason, the car erupted in awkward but necessary laughter and then we all changed the subject.

I have never hidden the seriousness of food allergy from my children.  If they ask, could I go to the hospital because of my food allergy? I say yes. If they ask, if I eat a food that I’m allergic to could I get really, really sick? I say yes.  If they ask, if I have an allergic reaction and forget my EpiPen, could it be bad?  I say yes.  They have overheard the terms life-threatening.  They have heard people in a hush ask me if my children could die from peanuts or milk.  They know.  They’ve heard about it.  They’ve been sick.  They’ve been to the ER.  They know how bad it can be.  I have never told them directly that they could die from their food allergy.  I didn’t want to yet.  Literature has shown that this age of children do not have the ability to truly understand the concept of death.  They are not dying, so I didn’t feel that this was an imperative discussion yet.

As they approach their teenage years, when children inevitably engage in more risk-taking behaviors and when they have a more mature level of understanding of the concept of death is when we planned to have the talk.  In the meantime, I have chosen to teach them about how to keep safe from an allergic reaction in the same way I teach them to cross the street safely.  To safely cross the street, I tell the children to stop at every alley and street, to look both ways for cars, to make eye contact with the driver before they cross in front of the car, and to continue to look around as they walk through the crosswalk.  I tell them to do all of these things to keep them safe and to avoid getting hit by a car.  I don’t follow up this conversation with saying “And if you do everything I have taught you, you still won’t be safe enough.  There is still a chance that some drunken maniac will careen through the red light up onto the curb and plow you over and you could die.”

I teach food allergy safety the same way.  I teach them to wash their hands before they eat.  I tell them to only eat food that I have prepared or that a family member who knows about their food allergy says is okay.  I make sure that they don’t try food if they aren’t sure what is in it.  They carry their injectable epinephrine everywhere they go. They and the adults and teachers and nurses at the school know exactly how and when to use the medication.  They know to call 911.  What I don’t ever do is follow this conversation up with this, “And if you do everything right, know what you are allergic to, ask an adult to help you make a good decision about the safety of your food, and have your EpiPen with you, something could still go terribly wrong and you could die from food allergy.”

What I am saying is that I prepare my children the best I can in life to make safe choices, like I am sure you all do.  But I don’t want to instill in them a paralyzing fear that no matter what, even if they make great choices, death is only a moment away.  As an adult, I know that that is true.  It is much easier to die than to stay alive.  But I can rationalize this, I can make a bit of sense out of this.  School age children cannot and now I have proof.  They didn’t see the series of errors that led to this little girl’s demise.  What they did hear was that she did everything right that day.  She knew what she was allergic to, she asked a trusted adult if her food allergen was in her lunch, she told her teacher when she was not feeling well but still she died.  That is such a powerless and scary story for us as parents but can you imagine how you would feel if you were the child with food allergies?

So before you use the words “death”, “die”, or “life-threatening”, in an attempt to sway someone into believing how severe and scary your child’s food allergy can be (all of which I have definitely done), or before you are in the company of someone who is presenting food allergy in a way that you are not comfortable with, stop and look around.  Can your children hear you?  Are they suddenly old enough to understand what you are saying? Do you want them to hear this conversation?  Are you ready for them to hear it?   Are they ready to hear it?  Because I’m pretty sure at ages 6 and 7 that mine weren’t ready.  If they are present during these conversations and they are old enough not only to hear you, but also to really listen to you, please do not assume they didn’t get it.  Talk to them.  My boys luckily shared some of their feelings with me but not all children will do that without being prompted.  In fact, if Milo hadn’t opened the door for the discussion, Gino probably would still have been wrestling with his fears alone.  You just may need to ask if they have any questions about anything that they heard at the walk or about their food allergies in general.

For four days following the walk, when leaving lunch, Milo had been rushing up to me before I left and making me pinky swear that I will see him at 3.  He had been persistent and emphatic about this.  As I started to walk out of the school on the second day, it hit me.  The reason he was doing this was because the mother at the FAAN walk said that she dropped her daughter off at school and never saw her alive again.  He was making me promise I would see him again.  A first grader should be worrying about play dates and baseball and his math homework.  He should not be worrying about whether or not, when his mom drops him off at school, he will ever get to see her again. So, listen, my sweet little boys, let me do this kind of worrying, in my own, very personal, sacred place where mothers worry about these kinds of things. I will carry this fear, all of your fears, for now.  And I promise, with not just a pinky swear, but with all my heart and soul, I will see you at 3.  I guarantee.

———-

Most of the readers of this post understood my point of view, regardless of what they choose to do in their home. For those of you who took it as though I do not teach my children to take food allergy seriously or do not think teaching the severity of food allergy is of utmost importance, I wrote this to clarify: As I said in the post, my children absolutely know the severity of their food allergies. As an allergist and a mother, I don’t think anyone should make light of the seriousness of allergic reactions. One of my children has had anaphylaxis to over 10 different foods in 5 years. I don’t think there is a single iota of his being that doesn’t realize the seriousness of this. I am in no way saying to hide the seriousness of food allergy. I am only saying that you should consider your child’s age, developmental stage, and personality before you have the conversation about dying from your food allergy. We are all out to do the same thing: keep our children safe and the way that we do that is based on our children’s needs and experiences, and our own experiences and is up to us as individuals. Some of you mention that you didn’t see the problem. For me, the problem was that the first story my children heard about a child actually really dying from their food allergy was a story in which the child that DID EVERYTHING RIGHT. She knew her allergens, she asked a trusted adult, she told her teachers she was sick and she didn’t get treated in time. This is a devastating, hopeless story. What can a five-year-old learn from this particular story? That no one really knows for sure if the food you’re eating is contaminated with the food you are allergic to? If you get really sick, the adults around you may not realize they need to help you? So all of the teaching and training and explaining and all of the discussions about the potential to die from your food allergy, how would that have helped Sabrina? That was the problem for me, for us. The children know what to do to keep themselves as safe as possible. Their first food allergy death story didn’t not have to be an absolute worst case scenario in which the child did nothing wrong but trust adults to save her life. How terrifying for them. I heard Sabrina’s beautiful mother speak at an adult FAI event several years ago. Her words made a deep impression on the adults at the event. They turned from doubters to believers. It made my friends comment that they would never hesitate to give the epipen to my children or other children they thought were having an allergic reaction. It is an imperative story for school staff, parents, restaurant workers, chefs, daycare providers, etc. This post isn’t about good parenting or bad parenting. It is not about hiding or shielding children from the truth. This post is about timing and empowerment over hopelessness. Thank you for taking the time to read the post and whether you agree or not, I hope that it gave us all something to think about.

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68 Responses to Food Allergy Death Talk

  1. I could barely get through this posting. I never considered or hesitated sharing the term “life-threatening” in front of my four year old daughter. Something I need to consider. Thank you for sharing. I’ll pray for peace in your children’s hearts.
    xoxo

    • Sarah says:

      Jennifer,
      Like I said in the post, I use this term in front of my children as well. I think that “life-threatening” may not mean as much to a school age child but hearing about the death of someone just like them… that hit home. Thank you for the prayers. And thank you for reading and commenting.
      Sarah

  2. Charl Rae Cobb says:

    Touching. Thanks for sharing. We are dealing with death and dying concerns in our 1st grader at this time also since a relative recently died (but perhaps not as intensely since our child has attended other funerals before and has a close relationship with Jesus already).
    When I presented a short program at my child’s school last year (per teacher request) about allergies (food, bee stings, etc), the kids brought up that a person could die from allergies. We talked about it in a logical way but in the perspective that they could all help by being aware of symptoms that someone is ill and what we could actually do to help. We emphasized empowerment through education and the kids soaked it up. Their parents and teacher did, too. Please be encouraged and supported :o )

    • Sarah says:

      Charl,
      Thank you for your comment. Definitely reassuring them that we have the tools of education and medication to keep ourselves as safe as we can was very helpful. We also prayed about it too. Have a wonderful night.
      Sarah

  3. Amber says:

    Beautifully written. It’s such a fine line we need to walk between making sure our young children are advocates for themselves, and unnecessarily scaring and confusing them. A lot to think about. This part of food allergies, the emotional side, seems to be the hardest.

    • Sarah says:

      Amber,
      This is such a hard part of it. It’s like we want them to be scared enough not to take chances but not so scared that they live in constant fear. Yeah, that’s a pretty fine line. Thank you for your comment and for taking the time to read.
      Sarah

  4. Elle says:

    This was a wonderful post- so worth reading. We became aware of “little ears” ourselves about a year ago. Our infant son was diagnosed with (multiple triggers) FPIES and within weeks, we were also confronted with the possibility of needing a feeding tube for him (though he gained weight just in time and didn’t in the end need it). I tried to keep my panic and tears for after the kids went to bed, but one day, when playing with her dolls, my daughter said “and I’ll give the witch the poison FPIES apple so she’ll DIE!” When I coaxed her to talk about it it became clear that she had absorbed and magnified our fears and was herself terribly afraid that her baby brother would “die and never come back.” If I had been crying at night before that, well, it was nothing compared to that night. I still feel terribly about the shift in her innocence. It doesn’t come up as often anymore, but I feel vigilant now, not only about making sure my son doesn’t accidentally ingest someone else’s snack or pick up crumbs from the floor, but about trying to keep all of the medical developments and stresses even farther out of my daughter’s reach. I wish I had read your post months ago!

    • Sarah says:

      Elle,
      We can just all do our best to keep certain truths hidden but when they come up, which they inevitably will, discussing them openly and with as much love as possible is the only way to go. The fact that you talked her through her fears instead of ignoring them opened the door for her to talk to you about things she is afraid of now and in the future. This may work out in our favor. If they know they can talk to us about death, maybe they will talk to us about all the other stuff too… school, bullying, dating, kissing, etc. :) Thank you so much for taking the time to read this post and for your very thoughtful comment.
      Sarah

  5. Yvonne Wood says:

    Thank you for the article. I sat reading it with tears in my eyes. It brought me right back to when my now 16 year old son was 5 and he asked me what it would feel like to die from eating the wrong food. For weeks we talked about it & went through how he only ever eats food from home, how we always have an epi pen and we rolled played on what to say when someone offers you food. I felt sick and sad in the inside but always came back with the same positive reply always be sure 100% of what you are eating, don’t take risks with food and always have your epi pen.
    My son is now a confident mature teenager living with multiple food allergies and we are very proud of him. I have heard him say to people when they ask about his allergies – its not that bad I just only eat what I can and don’t worry about the other food – it’s only food.

    • Sarah says:

      Yvonne,
      I absolutely love when a mother of an older child with food allergy posts a comment because it is such valuable insight for me and so many of my readers. I guess the key is just keep talking about it until they feel more comfortable and confident. So happy to hear how well your son is doing! Thank you so much for your comment, Yvonne.
      Have a great night,
      Sarah

  6. Aaron Poole says:

    It is a shame that your children are wiser than the adults that are supposed to be responsible for them when at school.

    I feel that I read about one of these stories every two or three months where once again an educator has somehow failed our children.

    As parents of allergic students, we get the looks and “helicopter” comments sent in our direction from time to time. I always ask “would you like to walk in our shoes?”

    • Sarah says:

      And if they knew what we had to go through on a day-to-day basis, their answer would be, “Not really…”
      Thank you for reading and for your comment, Aaron.
      Sarah

    • Emilia says:

      Aaron, your comment really hits home… I went to our school’s new deputy principal office to talk about a new program planned by the school a couple of days ago.

      Sitting on his desk was a jar full of salted nuts! And one of his responsibilities is to care for children with additional needs, including anaphylaxis!

      I hesitated to say anything on the spot because I have known how some of my friends who have children with anaphylaxis had problems with their schools because they were being politely vocal about it.

  7. Gina Lee says:

    Another wonderful post Sarah! It’s such a difficult balance. Our children need to know enough to keep them safe but not paralyze them. They have to know their allergies are serious so that they don’t eat the offending foods but we don’t want them to live in constant fear.
    This issue came up at an event of ours. Some children were reading food allergy facts to the audience and one of the facts was that “food allergies are life-threatening.” It was empowering moment for the children because it was their idea to read the facts and to “own” them, but one parent in the audience was upset by it.
    (There were no stories of children dying just merely the reading of the facts.) My response to the mother was that I cannot sugar-coat the facts. That one fact is the only reason that we work so hard to educate others and to make our world safe for our children. If it were not for that one fact, none of this would be necessary.
    Perhaps the solution is to leave the sad, frightening stories to venues with adults that may not understand the seriousness of food allergies.
    Thanks for the thought-provoking post.

    • Sarah says:

      Gina, I completely agree with your solution. There is a time and place for these stories, without a doubt, but at a supposedly fun, empowering event… not so sure. I heard the same mother speak at an FAI event 5 years ago and it was perfectly appropriate and powerful. I mean, as a mother new to food allergy, it was devastating but to the friends that we brought with us to learn more about food allergy, it was enlightening – they had no idea how serious it could really be. They have been wonderful and unbelievably careful and inclusive with our children since then.
      Thank you for taking the time to read and for your thoughtful comment, Gina.
      Sarah

  8. Natalie says:

    I cried when I read this. Such a scary and difficult thing. I am almost 20 with food allergies. When I was younger I never remember worrying about dying from food allergies yet now I struggle with people taking me seriously about the fact it could be deadly. I often get questions about if it is really necessary to wear a medical alert and won’t I be fine eating something as long as I have my epi pens. It is a difficult line trying not to live in constant fear while also informing others about the truths of food allergies.

    • Sarah says:

      Natalie,
      I could totally see that. In fact, I do that on behalf of the kids now. We go out to eat with one of my children who is allergic to egg and soy and I have to make sure the waiter and the chef realize that it is one of those allergies that can be life-threatening, not just an intolerance… but then I try to have fun and relax. I can envision that when you are old enough to do this yourself that having to have that initial conversation with the staff may make having fun at dinner a challenge. But just remember that you are advocating for yourself perfectly! You should be very proud of that fact. You do what you do to keep yourself safe. You’re smart.
      Thank you, Natalie. You’re perspective on this is invaluable. Please feel free to reach out via email. Have you checkout out Sloane Miller? Her approach is amazing.
      Sarah

  9. Andrea says:

    Tears are flowing I am not sure if its sadness that others have the same experience as us or relief that we are not alone.
    My 12yo anaphylactic to peanut and previously egg….. remembers his 1st and only experience with minute amount peanut at 4.5yo…. respiratory arrest, extremely hypotensive almost lost pulse and unbelievable angiodema and more much emergency care. His brother 8yo is anaphylactic to cows milk and also was to egg. The 12yo and his friends lost a friend at kindergarten who was anaphylactic to multiple foods and had an unexplained anaphylaxis during a kindergarten class. These darling children dealt with death by food at 4yo and know it is a real threat. Counselling them has been difficult as it is not an imagined fear but reality. It is devastating that their innocence has somehow been taken. Yet on the other hand their wisdom regarding allergies amazing and for my children reassuring.
    My 12yo has had fears and not always enjoyed the freedoms that should come with childhood and no doubt angst coming into teenage years and increasing independence. The children also worry about each other being exposed and fret.
    In the future somehow having a consultation at diagnoses with ? a psychologist organised would be such a gift so that our approach to dealing with our new lifestyle is not one of fear and angst but of empowerment.

    • Sarah says:

      Andrea,
      That is the perfect way to put it. They need to have an outlook filled with confidence and empowerment not fear. This post is bringing up so many experiences that other people are having that it is making me think very hard about how to reach this age group in an effort to calm their fears and boost their fun.
      Thank you so very much for taking the time to share your story. Your story is so very important for others in the community and me to read.
      Please feel free to reach out via email any time,
      Sarah

  10. Kys says:

    Thank you for your beautifully written article, brought tears to my eyes and more awareness to my mind x

  11. Shannon says:

    Hi Sarah,

    Thank you for sharing!! That day, my family went from celebrating and dancing to having a grandmother and friend in tears. While I support and honor such a young life lost, there were too many young ears listening that day. Truth be told, I am now putting two-and-two together and understand why my almost 4 year old has been more emotional when food allergies enter a conversation. Food allergies now equate to sadness in his young mind. Ummmm…..thanks for helping me make the connection.

    As always, I’m impressed by your strength as a mother and appreciate your willingness to share your stories with us!

    Hugs,
    Shannon

    • Sarah says:

      Thank you, Shannon. That’s exactly why I shared this story. There was a shift for us. One of my son’s is very verbal about his emotions so he opened the door for the others. I’m not sure I would’ve done it myself so happy he did it for me!
      Take care of yourself,
      Sarah

  12. dina says:

    Wow I could barely make it though to the end. The first day of school is very hard for everyone but especially for those with food allergies. My daughter must have seen me crying and came up to me and hugged me and said “dont worry mommy I know to only eat food you give me” What a mixture of emotions for me. To know that she is listneing to the things I tell her and I don’t want her to worry about me. It’s such a fine line.

  13. Colette says:

    Sarah, thanks for sharing this story. I have been to a number of food allergy walks this year, and while all emphasize safety and the need for research, none of them had a talk like this — clearly aimed at the parents and supporters, not the kids. I am so sorry that your kids had to hear this — they probably worry too much already. There is such a fine line between sharing and sharing too much. You’re doing a great job!

  14. Kyle Dine says:

    Thank you for sharing this experience on your blog. I have been going into schools and educating students about food allergies for the past 5 years and am very concious of what messaging I use about severity with different age groups.

    I agree that young ears are not ready to hear that food allergies can be deadly as they are quick to overlook the preventable steps. When presenting to younger grades, I never go further than saying “allergies can be very serious, so serious that if I ate something I’m allergic to, I would have to go to the hospital”.

    I was introduced to how serious my allergies were gradually and at an older age and never remember having much anxiety about them. My older sister was aware of the whole truth and was similar to your older child in being very overprotective.

    I’m not about doing shameless plugs, but I do think this song may help your kids. It’s called “My Epineph-Friend” and highlights the message that everything will always be okay because we take the right steps and carry our EpiPens. Just like a friend, your EpiPen has always got your back and won’t let you down. I hope it gives your kids a little pick me up!

    http://grooveshark.com/s/My+Epineph+Friend/3sWmmE?src=5

    Thanks again for sharing. I think this is a great reminder for everyone to watch their language with little ones present.

    Kyle

    • Sarah says:

      Kyle,
      I will definitely play this for the boys in the morning. They will love it! Thank you! And thank you for sharing the link to your song here! I am very happy that you read and commented on this post. It is wonderful for all of us to hear from adults with food allergy who are doing so well.
      Any chance The Allergist Mom could get a duet with Kyle Dine?????? :)
      Sarah

  15. Jennifer says:

    Thanks for the post and your families experience.

    I cried. It moved me. I can say my four year old is wise beyond his years and has to be to stay safe. He knows if we make a mistake he will get very sick and we will need to use “his needle” (epi) to get enough time to get help. I think there is a difference for those of us with contact reactive food allergies. Our children must understand the threat so much clearer because it is only by touch and so must the entire family.

    His sister who is ten was the one who has been dealing with the school issue the most. Having a contact reactive brother and having multiple issues where she was isolated from the rest of her class by our diet to keep him safe, the story hit her the hardest. It made it more real that when the aide in her classroom ate almonds at the table next to her, didn’t wash her hands and started touching things around her that she freaked out. A year ago I think there would have been a call but she would have remained more calm. Instead was very emotional reaction but part of the reaction was because there is suppose to be changes put in place to include her and keep her brother safe. (Took a shower when she got home and put her clothes in the wash.)

    There is a fine line. Healthy respect and caution and being totally scared. I don’t know where that line is for others. We have to choose that as parents of children with life threatening food allergies. He knows of he does not wear his meds and he takes risks that he could die. He is four. It is the truth. He knows the truth. He tells others about his allergies and tells them he could die if they don’t help keep him safe and follow the rules.

    I think we as parents want to shield our babies from it. I think the difference is that we have to be careful not to be dishonest about it. If we do then others and they themselves could downplay the seriousness of their situation and take risks.

    I am glad my oldest daughter is that supportive of her little brother. She is a hero for the cause and a great role model. The six year old is not far behind. He is a typical six year old but has much knowledge and has helped those he is in class with nut allergies by recognizing potential hazards, sitting with them at lunch and reminding people to wash their hands.

    I have worked in the child care field for years. That is my educational background. I think every child and family is different and each of us have to choose the path with our individual families situation. What is the way to keep our children healthy is the right choice no matter if it is different for every single child. The only thing that matters is that our children feel loved, supported and stay healthy!

    • Sarah says:

      Jennifer,
      True, it is most important that they feel loved, supported and stay healthy! I do know some very young children with food allergies who tell people that they could die their food allergies. At such a young developmental age, they don’t really understand what death means. It’s a good way to relay the seriousness of their food allergies to others but I wonder how much they really understand and how much they are just repeating.
      Each child has a baseline level of anxiety/risk-taking and we need to work with each child to develop a plan to talk about the seriousness of food allergies that is tailored to his/her needs.
      Thank you for sharing your story!
      Sarah

  16. Penny says:

    My son is going to be 5 next month. I have never held back the fact that he could die if he eats the wrong food. I guess we all have different ways of parenting and protecting our children.
    If we go to a restaurant, I tell the manager, in front of my son, that he could die if they cross contaminate or mess up. He tells people the same. I see it as a way of teaching self advocacy. If he had of heard the same story, I believe it would have hit him in a different way. Death is very scary, but I want my child to know how serious his allergies are so that he is ready to advocate for himself.
    You are an excellent mom to your children. Keep up all your great work. I love reading your blog.

    • Sarah says:

      Penny,
      As I said, my children do know how serious their food allergies are. As a pediatrician, I am very sensitive to the developmental milestones and when they can truly understand what death even means. My children know about death.
      I’m not sure this story could hit anyone in a very good way. The adults all around her failed to save her life that day. That story would feel pretty terrible to me if I was a child who trusted adults to keep me safe.
      Thank you for sharing your comment and have a great day,
      Sarah

  17. Sarah Kosiavelon says:

    Very well written article on the pros and cons about awareness when it comes to dealing with food allergies. However, I will say that I use words like life threatening and death when explaining my son’s anaphylactic allergies to eggs, nuts, and peanuts to the public or friends and family and I don’t plan on stopping because it might make my son afraid that he could die. The reality is he could. My son who is 4 understands that he needs to be very aware of his food allergies and always asks everyone, including me and my husband ,if we read the label in case the ingredients changed. Too many people in society say they have a food allergy when it’s actually an intolerance or not life threatening and it makes people who are not in tune with the allergic awareness community downplay when someone says they have an allergy. Or in our case a lot of kids are allergic to eggs but can eat them in baked goods-not the case for my son he is very very allergic and sometimes that is what I say very very. Using words like life threatening and deadly and we always have an epi pen on hand, explains to someone without this awareness how severe my son’s allergies are. My son definitely picks up on this language but knows he doesn’t have to be afraid of it because we act like we aren’t afraid of it. Fortunately, I bet for every kid that walked away from that talk a little more afraid of death also walked away with a little more awareness about food cross contamination. Knowledge can be scary but it can also be powerful. Being a good advocate for yourself is the first step in getting through something like an anaphylactic food allergy and if it means talking to my son about death early on so be it. I’d much rather have the possibility of him having a fear of dying then actually dying because he didn’t explain the severity of his food allergy to someone for the times in the future when I’m not around him as much as I am now.

    • Sarah says:

      Sarah,
      I still use these words too and my children know how serious their food allergies are. More of the point was that this particular story was hopeless and full of mistakes that the adults she trusted to take care of her made. There are other stories that can be shared with children that would be empower them, educate them much better… like the person who chose to eat a bakery cookie that may be contaminated with peanut and then also forgot his epipen. There needs to be a better lesson in the story for me than never trust an adult with your food allergies. I, in no way, hide the seriousness of anaphylaxis, so I hope you don’t take that away from this post. I just want to introduce them in an age-sensitive manner with a story that teaches about good choices not makes them feel powerless and as if death from food is inevitable. Thank you for your point of view and sharing it with us.
      Sarah

  18. Colleen says:

    Wonderfully written and something that has really made me think. I often times in front of my 8 year old have to explain over and over again how eating the wrong food can cause serious harm and death. Thank you so much for sharing this story. I will now choose my words more wisely and out of her earshot.

    Thank you!!

    • Sarah says:

      Colleen,
      If she has already heard this, you may just need to talk to her about it. I am not saying hide the reality of food allergies. Just be aware that now that she heard it, she may have questions.
      Thank you, Colleen,
      Sarah

  19. Tonya says:

    Sarah,

    Thank you for sharing your family’s story. My 6 year old daughter has a tree-nut allergy and we had to have this talk with her, not by choice mind you. Earlier this year she had a cousin pass away from a heart condition, she also was 6 years old. My daughter asked us if she was going to die when she was 6 from her nut allergy; my husband and I both said “NO!” very quickly. It was heart breaking to need to have this talk with her at such a young age. We told her that we are very careful about what she eats because of her allergy and that the EPIPen is only if there is an accident and she does eat something unsafe. It is not fair that we need to have these kind of talks with our young children. We just want them to be happy and carefree.

    • Sarah says:

      I couldn’t agree more. I want them to be kids! I want take care of their worries for now. They are aware. They are advocates for themselves. The family was going out for pizza so I brought Gino’s pizza from home. The waiter asked him what kind of pizza he wanted. I watched from the other table. He explained to the waiter that he could not eat that pizza because he had food allergies and it would make him sick. He told the waiter that he brought his own. He did exactly the right thing. He did the right thing because he was educated not because he was terrified. That’s what I chose to do for now. Thank you for sharing, Tonya.
      Sarah

  20. Kristy says:

    I was also at the walk and was thankful that my son is only 4. I know that he hears/understands way more than I know, but I can only imagine how hard this would’ve hit home if he were older. It was SUCH an emotional day for me (he was diagnosed a year ago) and the first time I have been to the walk. It was SO powerful to me to see all those boys and girls, just like him. I LOVED being part of the food allergy community “in the flesh” instead of in cyberspace. I felt so supported and validated in the way we’ve changed our life in the last year.

    It is so important for children to know the seriousness of their allergy but not in a debilitating way. Our food allergy kids already have to grow up way too fast and be more responsible for themselves than any other kid their age. I also use “life threatening” often in restaurants, etc. to help drive home the importance of food preparation but always try to do it “on the side” if I can. I feel like all we talk, think, and dream about is his allergies and I know that he does too. I want days like that walk to be a day of celebration for him. . one where he can see he’s not alone and understand that so many people are out there to help. I appreciate your honesty and loved reading this post.

    • Sarah says:

      Thank you, Kristy. I wanted the walk to be purely fun for them and encouraging and empowering. It turned out to be a sad memory for them, unfortunately, but we just keep trying to highlight the great parts of the walk because there were many wonderful parts! Have a wonderful evening!
      Sarah

  21. Michelle says:

    Thank you for this. We have not had to deal with this aspect of food allergy questions from our nut-allergic 4 year old, yet, and I appreciate your thoughtful words and sharing your experience with us. Straddling that line between sharing the whole truth and recognizing which truths they are mature enough to handle requires constant practice I’m finding.

    • Sarah says:

      Michelle, That’s spot on… the whole truth and the truths they are mature enough to handle. That’s what this post is all about. Thank you for your comment, Michelle. I appreciate that you read this blog and that you take the time to comment.
      Sarah

  22. Diana says:

    Thank you for sharing. I never stressed the possibility of death part either. But recently found out a friend who has allergic children tells her kids constnatly that they could die from eating someting they are alergic to. She says they are so resposnbilbe and it has helped, etc. etc. So against my better judgment, I decided she must be right. So one day when I was upset about a close call, I told the children they could die from their food allergies. As soon as I said it, I realized I did the wrong thing. My six year old eyes grew big and he asked repeateldy as if in sheer disbelief, ” Could I could actually die?” How could i take it back now? Why had I said it? I knew why – to scare them enough to be safe, but had I gone overboard? Every family is different, but, for mine, it was the wrong thing to say at this time. From now on, I I trust my gut!

    • Sarah says:

      Diana,
      We all know our own children best. You were trying to do the right thing. And you know what, as long as you keep an open line of communication about it, it’ll be okay. I didn’t want to have that conversation yet either but the boys are doing better. The more we talk, the better they feel. Thank you for sharing so honestly. I appreciate it.
      Sarah

  23. emilee says:

    ah, Fear and Death, holding hands. We can’t ignore mortality when it is one bite away. So much of this severe allergy stuff is information and planning, but I think we’ve entered into something covered by faith. I felt she needed to know (and knew from anaphylaxis) about death. I always say something like this….God loves you more than I do and He promises to never leave you and to always take care of you.

    Thank you for the post. Will you expand on it in the future? I’d like to hear more about 1) dealing with fear, ours and helping them with theirs, 2) learning abstract concepts and age, 3) the emotional side of severe food allergies, 4) the affect it has on siblings….etc.

    We remember the information behind stories we hear. That brave mom’s story will save lives.

  24. Your post brought me to tears. I cannot even begin to fathom how it must have been to be a child in that situation, hearing that a child their age died from something they too unfortunately have to deal with. My son was only diagnosed just over a month ago, so I have a long way to go with grasping what is ahead and truthfully it all scares me. Thank you for sharing this story.

  25. Gabrielle says:

    Thank you for this post. As I sit here in tears, my heart truely breaks for my children and all children with food allergies. No kids should have to think about these things. I too am guilty of making sure that everyone knows certain foods could be deadly to my boys. I will definately be more careful in doing so from now on. Thank you.

    • Sarah says:

      Gabrielle,
      Thank you for your comment. It is a very tough situation. Getting the importance of food allergy across to people is so important and sometimes we need to be that blunt. We should always be careful how we approach this topic but it can be hard when you feel like no one is getting it. I am sure that you do a wonderful job with your children!
      Take care,
      Sarah

  26. Marisa says:

    This is a wonderful article. I am 23, and have been allergic to milk and eggs my whole life. I am anaphylactic with milk, have had accidental exposures of the years, almost all due to restaurants telling me something is safe when it wasn’t. Eggs, I haven’t had a reaction in over 10 years, so we aren’t sure how bad that allergy is anymore. I run across people all the time who still don’t understand allergies. I work in a pediatric ER, and when I refuse to eat something (like when our department manager brought in ice cream for everyone during Emergency Team week last week) I am often asked “why don’t you just take benedryl then eat it?” And I always have to respond, it doesn’t work that way, I am not lactose intolerant, I am allergic, If I have any tiny amount I will end up giving myself an epipen and becoming a patient due to anaphylaxis. Then I get the response “oh, ok, none for you!”. It always amazes me how even ER staff don’t fully understand food allergies. They know what to do if you are having a reaction, but not that anaphylaxis can only be prevented by not eating the offending food. The other situation I come across fairly often is that I babysit for families where the kids have no food allergies. I can’t stop the kids from not eating anything I can’t eat, its not fair to them. So I have to be hyperobservant and make sure I wash their hands after they eat, and wash mine after I clean up after them, or after I touch anything that had milk or egg in it, before it somehow ends up in my mouth, nose, or eyes and causes a reaction. The one set of kids I babysit for (now 7 and 9, but have had them for 6 1/2 years) understand that I can not eat certain foods like chocolate, pizza, or ice cream because they will make me very sick. It makes me so happy that they are starting to understand it despite me never really telling them. I never felt it was necessary to tell them, since I’m there to take care of them, not the other way around. If they ask questions about why I refuse to eat certain things, I answer truthfully, but keep their ages and understanding in mind when I tell them how sick it can make me. When I was your kids’ ages I was the only kid in my entire school with food allergies. I brought my lunch to school every single day from pre-k all the way through high school graduation. The office staff at the schools and all teachers and parents knew what to do if something happened. The other kids knew I couldn’t eat certain things or else they would make me very sick. I truly don’t remember when I learned I could die from food allergies, it just always seemed to be a fact of life. In the past 5 years more and more food companies are making allergen free food. Every time I go to the grocery store and health food store I find more foods that I can eat. It is 1000x easier to find safe foods now that it was even 5 years ago. It is important for the food allergic child to be aware about how sick certain foods can make them, but they shouldn’t concentrate on that 24/7. I can tell you from experience that it is possible to have a very fulfilling life with food allergies! Thanks again for this article, I will be sharing it on my facebook page for others to read!

    • Sarah says:

      Marisa,
      I am honored that you took the time to write this comment and I really hung on every word. It is so important for those of us in the food allergy community, particularly parents of children with food allergy, to hear from your perspective… in fact, it is imperative. I do not want my children to grow up in fear. I want them to be smart and diligent and responsible and self-advocates but not afraid. I think your comment reinforced what I am trying to do and what many of us are trying to do with and for our children. Thank you very, very much for sharing this comment with us.
      All the best to you,
      Sarah

  27. alice says:

    I tried to protect my child from what could happen. I think I even upset a mom of a child with MFA’s who was going to speak to my child’s class about food allergies — I asked her if she was going to mention death. I needed to know what she was planning to say since it had intimate bearing on my child.

    around third grade my son asked me point blank what could happen and I point blank told him what could be the worst case scenario. I am glad I did because not long after, a thirteen yr old of a lady who I had hired to tutor my son blurted out to him that he has a friend who can die in FIVE minutes if he EVEN SMELLS peanut butter. thanks kid . there it was . Harsh reality delivered by age 13. So, I am glad I had talked with him already — even if he himself initiated. I want him to learn from me not the insensitive world. And as we all know people say everything and anything. Watch out for waiters and waitresses — also capable of striking up an unwanted conversation. Am I upset with the 13 yr old? No. Just do realize — they will hear it one day from a source.

    • Sarah says:

      Thank you for sharing, Alice. There is something about being able to deliver it your way, in your time. But, alas, it is life and we have very little control of what other people say around our children.
      Take care,
      Sarah

  28. Amber says:

    I also feel conflicted in wanting my son to have enough fear that it makes him aware and careful of the dangers of the food around him but not so fearful that he is scared to live his life outside of our house. He has a severe tree nut and peanut allergy and is 7 years old. We recently went to a family gathering and after years of me reminding them about his allergy we were greeted with a pecan pie. We took our son outside and I reminded them again about his allergy and my Aunt looked at me and said “What will happen to him anyway?” I blurted out “He can die”. She moved the pie to the corner of the kitchen. I hope my son did not hear me but there are some people that you just can’t seem to get through to. Do we stop going to family functions? This happens a lot and we already bring him a separate meal but some people truly seem irritated about it. We just returned from an out of town wedding that required so much prep work and discussion before hand and while we were there that I don’t know if it was worth it. My sweet wonderful little boy has had a couple of nightmares regarding his allergy and my ability to protect his feelings and worries is limited because of what others may say or do in front of him.

    • Sarah says:

      Amber,
      It is just so tricky, isn’t it? I’ve done the same thing… after repetitive sloppy kisses on the baby’s face or people insisting on having nuts out a party. When people don’t take food allergy seriously, you have to bring out the big guns – he can die from it. I think that is only natural when you feel the life of your child is at stake to do or say something to make them believe how serious it is. Just keep encouraging your son to talk to you if has questions and assuring him that you all take the best steps possible to keep him safe.
      Thank you for sharing and for reading,
      Sarah

  29. Natalie says:

    Thank you for such a beautifully written and heart wrenching post. I can only imagine how difficult it must have been for you and your children to go through this let alone write about it. I wish I could take away my daughter’s life threatening food allergies and have them in her place. I wish I could spare her all the challenges, pain and discomfort, fear and isolation but of course I can’t. The only thing I can do, aside from keeping her safe and aware, is do the worrying for her right now as you so eloquently wrote. Let her enjoy the fleeting blissful moments of childhood before the realities of life and death are added to her already full plate. For a helpless mom, I am grateful I can at least do that. Thank you again.

  30. Debra says:

    What a conviction! Please never stop writing! I am guilty of spreading the fear, because I get overwhelmed with fear and it spills over. I really need to reevaluate my tactics to educate. Wow, I feel horrible and the truth hurts sometimes.

    • Sarah says:

      Debra,
      Please don’t feel horrible. This was my experience with my children and I am certain that you do what you feel is right for you and yours. Thank you for reading and for your comment!
      Sarah

  31. Linda says:

    Beautifully written! I went through the same scenario at last year’s walk in CA, where my 10 year old heard the tragic story of BJ Hom. As I stood there crying, he asked me, “What’s this about? Did he die?” My husband tried to distract him because he knew I was crying. We discussed the whole story later that day. I, like you, have told him his food allergies are “life threatening”. He knows he could die, but I had at that point, never looked him in the eye and said, “You can die if you eat a peanut or tree nut.” Now at age 11, he knows for a fact, that he can die from his allergies. We are ever diligent and I drill into him that he has to be his own advocate and he is responsible for everything he puts in his mouth. A lot of responsiblity for an 11 year old, but unfortunately that’s his reality. He knows to only eat food from his backpack that I pack for him, and luckily they have a no sharing rule in his class.

    • Sarah says:

      Linda,
      Thank you so much for sharing your experience. Being that it is such a hard conversation, we have to figure out works best for our children and our family. It is a lot of responsibility for an 11 year old but I bet he’s a fantastic and smart one!
      Thank you for reading and for your comment.
      Have a wonderful night.
      Sarah

  32. Nancy Slattery says:

    As grandmother of four-year-old Max who has multiple food allergies, I always appreciate information sent by my daughter who is on the front line of keeping this precious boy safe. Here are a few excerpts from my response to her when she forwarded me your post:

    “Thank you for sending this, Jamie. I just finished reading every word, even the comments. The one from the parent of a 16 year old boy was just the most encouraging thing, don’t you think?

    “I think you and Ryan do a great job taking care of Max and helping him understand his allergies and how to keep himself safe. I’ve observed him taking on more and more responsibility for himself as he gets older, and that’s just awesome. You also do a great job of passing along information and understandings about issues to those who are close to him and who see him often. I appreciate that so much!

    “I believe the words “life-threatening food allergies” pack a powerful punch with listeners and I appreciate them myself to keep the importance of being careful and vigilant about what Max eats. When I first heard you use those words I remember thinking “YES, that’s exactly right, YES, it’s that important.” And that’s not a bad thing at all. I do believe that terminology has an important place in explaining the importance of vigilance with anyone you’re trusting to care for him . . . school helpers, teachers, friends’ parents, babysitters, relatives, etc.

    “I guess the point is that children are more impressionable that we sometimes realize and that they process information from all sources (playmates, adults, TV, movies, books, etc.) in sometimes unexpected ways, and what those little ones heard at the allergy walk was hitting home awfully hard. So sad that they have to worry like that. And we know that Max listens and understands too.

    “What a great post bringing forth such an important issue. Thanks again for sending it.

    “Love,
    Mom”

    • Sarah says:

      Nancy,
      Thank you very much for sharing excerpts from the letter you sent to your daughter. She is very lucky to have such an understanding and caring mother. I know I wouldn’t make it a day without the understanding and care of my mom. This was a very complex situation and being aware of its impact on children is so very important.
      Thank you for reading and for your comment.
      Have a great day!
      Sarah

  33. Marc says:

    Hi Sarah,
    We too had the privilege of hearing Mrs. Shannon speak at a walk earlier this year, undoubtedly very similar presentation. I understand everyone needs to come to this “level” of awareness in their own time. That being said, I think too many of us wait too long, denying, postponing never getting quite the right opportunity to have that conversation, wishing it were simply not necessary. But the fact is that it is necessary, and they are probably ready to hear it, even need to hear it, earlier than we would like to imagine. There is no life without death, all we can do is what we can to get as much life as possible before the inevitable. The kids need to know that too. For that reason, I am glad Mrs Shannon delivered that important, albeit upsetting speech and that you chose to write about it – just look at how this has encouraged conversation among us! Not to mention arming our children whom we love and want to protect, with the awareness and (emotional) tools they need to start assuming the increasing control they have – I think somebody already mentioned the importance of empowerment! Good luck, patience, understanding and wishes to all!

    • Sarah says:

      Marc,
      Thank you for reading and commenting. Yes, maybe children do understand things earlier than we imagine but in most cases, young children may hear something and understand it but only to the point at which their intellectual maturity allows them to. There is a lot of research on childhood development that supports this thought. Maybe some people postpone this talk needlessly but my children were not ready for this particularly hopeless story. None of the education and warnings and death from anaphylaxis awareness could’ve saved Sabrina that day. It was the adults that were supposed to be taking care of her that failed her. I wrote an addendum under the original the post I would like for you to read if you have time.
      I agree that Mrs. Shannon’s story is crucial. I heard her speak at an FAI event 5 years ago and although it was painful for me to hear, it brought about a new understanding of food allergies to the friends that we brought with us. Yes, it is a powerful and necessary story in the right setting.
      I do appreciate your perspective and appreciate you adding to this important conversation.
      Sarah

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