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Can your food-allergic child be trusted?

Posted on April 7th, 2011 by Alison Read 23 Comments - Add Your Own »

I thought she understood. I thought she would say no. But she ate it, at school, when no grown-ups were around. It was a cupcake, given to her by a friend at recess, and she ate not only the frosting, but half of the bottom.

Food Allergy Child Keeping a SecretI thought she would have at least told me that she had done it after the fact. Nope. Not a word. So how did I find out? From another mom, whose daughter also was given a cupcake at recess by the same friend. She told her mom that my daughter ate it too. The mom told me, out of concern. I confronted my daughter — at first, she said it was only the frosting, but days later, she admitted that she had eaten part of the cake.

I have to admit, I was shocked. It’s not like she committed a crime, and I didn’t make her feel that she was in trouble for doing it, but I had to initiate the “You could die” talk, to which she responded, “I could die? But I’m only six years old — I have barely even lived a life!” Heavy stuff for a 6 year old. My heart was breaking, but what else am I to do? The fact is that the cupcake could have had nuts in it. Unlikely, but WHAT IF?

I don’t blame anyone — the generous kid didn’t know, the school didn’t see it. It’s the responsibility, albeit a big one, of my daughter to say no. Aside from reminding her about the big shot she would have to get in her leg (to prevent her from dying), I also repeated what I have told her before: that any time she is offered a treat and says no, she gets to have a treat that’s as good as or better when she gets home. I promise. “But it just looked sooo good.” Sigh.

If there is any silver lining to my daughter sneaking a bite of potentially fatal food, it is that she didn’t have a reaction. It didn’t have nuts, but surely the cupcake had egg in it. She had an anaphylactic reaction to an egg last summer, but it was not baked. One study showed that the majority of children with egg allergies (74% in this study) could tolerate heated eggs, baked in a muffin or in a waffle, because the heat reduces the allergenicity of the egg. According to an interview with one of the researching doctors about the study, “past history of anaphylaxis was not an exclusion criterion and we found no difference in rate of anaphylaxis between those who reacted or tolerated baked egg.” So, I’ll be making a call to the doctor to set up another egg challenge. Let’s hope it goes better than the last one.

Allergy Moms and Dads, I would love to hear your thoughts! Has your child eaten food they shouldn’t have? What are your strategies for keeping them safe and having them take responsibility for themselves? At what age is telling your child he/she could die too much information, and at what age is it necessary? And how about that egg allergy – anyone do a baked egg challenge?

Comments

  1. GULP!

    You handled things just as I would. I hate to bring up the ‘dying’ card, but Bella has to know the gravity of the situation. She (like your daughter) has to grow into her own advocate and the possible consequences of making a bad decision.

    on the other hand – how cool would it be if she has outgrown eggs?!?! terrible way to find out though :)

    big hugs to you Alison!

  2. That situation so hard for families always you need to keep an eye at your kid.

  3. What an awful conversation to have to have with our allergic kids! But it is important that they know the gravity of their allergies. My dairy and egg allergic son is in 2nd grade and recently shared a snack with a friend. She gave him a couple of her Baked Lays, which in all fairness, he has had. However, hers were Sour Cream and Onion (which are packaged almost identically as the plain) and a few bites threw his milk-allergic body into a reaction.
    Luckily, the nurse is on top of dealing with allergies and gave him his Benadryl, washed his hands and face, and kept him with her while she called me. He fell apart with fear when he heard my voice on the phone. My heart broke, but it was a very important lesson for him to be reminded of what a reaction feels like.
    I have wondered about the heated/cooked egg challenge, but our allergist has not suggested we try it. We have a status quo that we can all live with right now, and aren’t willing to challenge it, even if I AM curious about it…
    I’m glad your daughter is OK and wish you luck if you go ahead with another challenge.

  4. Alison thanks for sharing your story. My daughter as not “snuck” food but did eat something I had told her NOT to eat (a safe alternative was in her bag!) because she “forgot” and because she trusted the adults around her NOT to put unsafe food in front of her. We were extremely fortunate that the food did not contain nuts or egg although it did contain soy-one of her lesser allergens-and she did not get sick which was a surprise and a relief. But-like you I learned to remind, remind remind her if it’s not “Mommy approved” you say NO thank you!.
    Alexa is allergic to egg as well. We have avoided baked egg until this year. She has tolerated Eggo Waffles (suggested by allergist as first try) and Aunt Jamima pancakes. I’m still not 100% that she can tolerate all baked egg but this gives me hope. She just reacted to an Entenmann’s little bite which contained egg but I don’t know if it was the egg or cross contamination so the jury is still out. More challenge at home I guess. Good luck!! BTW-Alexa is almost 6. I have not yet told her she could die because I don’t want to increase her anxiety but I have told her she could get extremely ill and have talked with her about the 2 recent children who are in comas. She did ask me recently if she could die and to be honest, I just avoided answering her. Not a great way to handle it but I guess I’ll know when the time is right to explain that part to her. Hugs to you and hopefully your daughter has learned her lesson.
    Susan

  5. Alison, I am so moved by this story. My children (now young adults) do not suffer from life-threatening allergies but they do have other medical issues that have, at times, been life-threatening.

    And reality is that we cannot “always keep an eye on our kids.” It just is not possible. Nor is it a good solution since a child with allergies must progressively learn to manage her condition. You have done every thing possible to make school a safe environment for her, including building relationships with other mothers, like the one who let you know about the cupcake. There is no 100% safe environment –for anyone! If you were to hold your daughter closer, hovering in and controlling her environment, the psycho-social costs to her healthy development would be extreme.

    While your daughter has to bear the hard burden that she could die from something she eats, you as her mother have to bear the hard burden that you cannot protect her in every moment.

    I am so grateful that your daughter is ok. This sounds like an important experience in the journey towards the life she will eventually have, independent of you. Thank you for sharing this story.

    ~Tracy

  6. Thank you so much for sharing your story, my son has celiac, lactose intolerant, can not have juice and now we have to watch for a peanut allergy. He was DX at the age of 4 he is now getting ready to turn 7 and we have been very firm with him from that day on, We do often remind him that if he eats something he should that he could get very sick, which he hates feeling bad. When at school during holiday parties i am always there, we did have a problem this last problem they decorated cookies, i had his own and i made sure all children washed hands and that he cleaned his hands before eating and after and clean his desk before and after and he still got sick so for us we just have to watch and teach. But when bring up the dying subject to my husband and I do tell him, our son have lost 2 people he loved very much a month apart. My question is what would you tell your child if they crossed the street with out looking or walks away from you, would you tell them in the sweet way or tell them how serious it was, its the same way when it comes to life threating allergies.

  7. MelissaS,
    My allergist suggested we do not do baked eggs based on the severity of her egg reaction during the scrambled egg challenge. But after reading studies, and based on her no-reaction to the cupcake, I think I want to try it. I happened to meet a woman today who told me that her son, who is now 24, is anaphylactic to eggs, but can eat them baked. It gives me hope.

    Susan,
    I totally understand not wanting to discuss dying (I don’t even let her see the news). I don’t want to either, but my 6 year old is quite a rebellious little girl anyway. She is ahead of years in many ways (I am dreading the teenage years!!), and I feel the only way to get through to her sometimes is to scare her. I do feel she has anxiety about other aspects of her life, but unfortunately not enough about food allergies.

    Tracy,
    Yes, letting go of control of our kids is hard. I am still working in her classroom, attending any parties she goes to, and packing her lunch. I know as she gets older, I am not going to be as present in her daily life. I am going to be worried a lot!

    Maria,
    Good point!! We tell our kids they can get hit by a car, which is a pretty dreadful thought, but we tiptoe with food allergies. I will remember this. Thanks.

  8. Gaby,
    Thanks for your hugs and right back at you! Has Bella ever “cheated?” I know some kids who would NEVER because they are so scared. But my daughter doesn’t have enough fear. She even told me that she doesn’t remember the reaction she had to eggs last summer. Back to square one?

  9. My son did a baked egg challenge last summer, and he did okay with it. He can now have eggs as long as they’re baked for at least 30 minutes at 350 degrees. He’s only 4 1/2 but we’ve had to tell him that he could die because he seemed to think it was a big joke, and would tell us that his doctor told him that he’s not allergic to eggs and nuts anymore. He hasn’t eaten anything yet, but I can totally see him doing what your daughter did. It makes me want to keep him at home in the bubble because it scares me! So glad your daughter’s okay…

  10. Mine throws up with gluten, but it was probably a year and a half before he accepted and stopped sneaking it whenever he got the chance. With dairy, he gets violent and has meltdowns for days, as well as getting diarrhea. It took even longer to get him to accept that any food that made you beat on people you love – we compared to drugs and alcohol – wasn’t worth it either.

    He still has minor foods that will give him problems in larger amounts, and has to deal with his body’s reaction if he has too much.

    Luckily he doesn’t have anaphylaxis, because it takes him a lot of reactions before he “gets it”. He is now almost 13.

  11. Oh, it’s so hard. They know, but do they KNOW? I am so glad there were no serious consequences.

  12. I went through something similar years ago with my daughter, who has celiac disease, only the culprit was an Oreo cookie. She did not face the threat of an anaphylactic reaction, like your daughter did. But anything with gluten was strictly out of her diet and I had led myself to believe she would never take the risk of eating something she knew was off limits.
    I do remember reminding myself that the worst thing I could do was over-react. So I remained calm and we talked about it and she never — to my knowledge anyway — purposely cheated on the diet again. She’s now 20.
    Life is full of risks, more so for children with food allergies and intolerances. As parents we do our best to equip them to make good decisions. But it is a little scary to realize it’s really in their hands. The good thing is most allergic and gluten-free kids don’t take too many chances and most do quite nicely with their restrictions.

  13. I don’t think my son has ever cheated. At least not that I’ve found out about. I shudder to think about it. We’ve talked about what would happen if he did. We talked about the shot and about death. But like your daughter he’s only six years old so I’m not totally sure he gets it.
    He’s allergic to egg too (along with wheat, rye, barley, oat, peanut, and tree nut). We did a baked egg challenge when he was 18 months old and had to use the Epi Pen. He’ll be 7 in July and frankly I’m itching to do it again. The Allergist has felt that the RAST numbers don’t indicate much of a change so we’re waiting.
    Thanks for sharing your story. I’m so glad that it turned out well and that you were able to find out and address it. I’m going to bring this up again with my son tonight.

  14. We had a similar encounter with our 3.5 year old daughter, who is allergic to dairy, eggs, and peanuts (breaks out in hives). She came home from dance class saying that she ate a Munchkin that was given out in class for a friend’s birthday. I was shocked, especially since she didn’t have a reaction. At age 2 her egg allergy was class 4, so I’m very curious if this has gone down since then. We’re going to the allergist in May so I’m hoping we can try a baked challenge. Good luck to you!

  15. I have a question and would love some feedback. When your kids were 2-3 years old how did you explain their allergy to them? Our little boy is about to turn 3. He had an anaphylactic reaction to peanut butter last year, a week after his 2nd birthday. Luckily EMTs arrived quickly and gave him 2 shots of epi which saved his life and the drs kept him at the children’s hospital ER to observe him until he had no more symptoms of the reaction. At our subsequent appt with an allergist he tested positive for peanut allergy and we were told to refrain from giving him other nuts as well until he was tested again at which point they will expand what he is being tested for.

    He’s a spirited, loving wonderful boy and loves people. It was sad this weekend when we didn’t feel we could let him go to a birthday party for a boy from his daycare since when we asked about food being provided they indicated items that are not peanut/nut free. We know how kids this age play and eat – they are little animals (as they should be since they are only kids after all!) – but that means there are no safe scenarios other than to avoid the situation.

    Anyhoo, long story short, we are trying to figure out how to best relay to him the severity of his allergy. We are always ask him if his epipen is in his bag or mommy’s purse or daddy’s pocket (as the case may be) before we leave the house (we already have it with us, we just want him to get used to checking for it before he heads out anywhere). We play groceries, cooking and eating with his play food and remind him to look for peanut free symbols. One day we were playing food and he announced “I LOVE peanut butter!” My husband and I were dumbfounded. But he’s not even 3 yet so we know that he doesn’t fully get it. In a calm voice my husband said, “No Will, peanut butter isn’t good for you. What happens to you when you eat peanut butter?” And he said “I get very very sick, right Daddy?” I just kept thinking “what if he says something like that when he’s not with us?” I mean, the reality is that he isn’t always going to be with us. He has to go to daycare and eventually school, etc…

    He doesn’t remember his reaction. I’m not sure if that is a blessing or not. He was terrified when it happened (as was I – I was 7 months pregnant at the time too AND home alone!). We have little PlayMobil and Fisher Price doctors and patients and ambulances and firetrucks to try to remind him or teach him what happens if he has a reaction (but not to make it seem fun?!).

    He’s only had the 1 reaction and I pray that it’s the only one he ever has. How do you guys talk to a 2-3 year old? This year has been tough. Every time a new situation is in front of us we have to figure out the food and it has shocked us how many people just don’t get it. Then I remind myself that until Will had his reaction, I didn’t get it either. Anyhoo… thanks for reading this rambling message! Any suggestions for how to effectively educate my little boy about his allergy without scaring him?

  16. Denise,
    It sounds like you are doing everything you can do at this point. The reality is that he is not going to get it. We as parents have a hard time understanding it!! Even my 6 year old doesn’t really get it and she barely remembers the anaphylactic reaction she had in the doctor’s office last summer – they had to give her 3 shots in the arm! I had pictures of her lobster-red face to show her and then she sort of remembered.

    About the birthday parties — when my daughter was that age, I never dropped her off at a birthday party. I was always there, with food and cupcake. I felt like I was hovering at times, but it was what I had to do. I always checked with the parent of the birthday kid to find out what would be served at the party. Now I drop her off and she carries her own cupcake in its carrier, along with her emergency pack. The parents of her friends all know now and it’s amazing how they look out for her. But I still worry!!

    When she was around 5, I showed her the video of kids talking about their food allergies: click here to see. She really liked that and still does.

    Good luck to you – it’s so hard what we have to do. Thank goodness for this online support!

  17. I can’t thank you enough for your encouraging words, advice and for the link to those videos. I just emailed the link to my family and friends because Will is the first kid in our circle to have severe food allergies and everyone is struggling to understand and sometimes to accommodate.

    Hearing the kids and the parents talk about their experiences helped to validate the feelings and worries I’ve been having for the last year.

    Thanks again. So much!

  18. I just found your site this morning, after my egg, milk, peanut allergy 10 year old accidentally ate a Blueberry Eggo Waffle that was meant for one of his brothers! He said, “Mom, that BLUEBERRY waffle was good!” I totally freaked out and then realized, NOTHING happened. They have Egg AND Milk. I’ve read that some kids can tolerate things cooked, just as you said above, but this kid is crazy allergic to eggs. He’s never eaten one (we found out about his food allergies when he was 10 months old.) But, if anyone had egg on their hand and touched him, hives, runny nose, etc. etc. And once, he had egg white on his hand and touched his eye…NOT a good thing. Hives, coughing, snezzing, face swelling…etc.
    Anyway..just wanted to share. I am utterly amazed and thankful that he’s ok…now to call his allergist. :)

  19. Belinda,
    Wow! I can understand that you would be freaking out. Maybe he can tolerate baked eggs! I was hoping my daughter could, and the allergist had me bake eggs into cupcakes. Then, the allergist did a skin test with the cupcakes I had baked the eggs into, and my daughter reacted, so we did not continue with any baked egg challenge, even though, like your son, she had inadvertently eaten baked egg and was fine. I am still hoping!

  20. Hi. Thank you for your story. I was feeling all alone right now & quite sad. You see, 2 of my kids have Asperger Syndrome midly & have been great helped by the G/F diet. It took me years to embrace my daughters quirkiness & was shocked to see it disapeer when I Took her off gluten. Her grades went up, she stopped provoking others, making sounds, fidgetting, & began to behave like others girls her age. Recently she had gluten at a friends over the weekend saying she misunderstood me. By Monday she was a different child. It’s been almost a week & she’s still acting as she use to. I’m so sad she’s going through this & want to know if there’s anything I can do to help her. I guess, well, I’m usually the strong one, to help others you know. And right now I just feel like there’s nobody around me who understands. Well thanks for the posting anyway. *Heather

  21. We started dealing with food allergies when our daughter was 20 months old. Her visit to the allergist came after she had Serum Sickness after having an antibiotic, and had been having reactions to antibiotics since she was nine months old- when she had her first antibiotic. Both sides of our family had cousins with peanut allergies, so we knew not to give them to her. Her first Allergy testing came back with allergies to soy, oat and shrimp. She also had broken out with rash to food dye (Yellow 5 & 6, and Red 40) So we started avoiding peanuts, tree nuts, fish, shellfish, oat, soy and food dye. We later added milk and officially almonds and peanuts when she was 3. We always told her that she was never to eat or touch any food unless mommy or daddy gave it to her. One day when she was 2.5 we were at our neighbors house and our neighbor put her one year old son in his highchair with cheerios on his tray and asked my daughter if she would like some too. My daughter told my neighbor, I can’t eat any food unless my mommy or daddy give it to me, I have allergies. I’ll ask. OK?

    She has continued to do well, asking if food is ok to eat and knows that sometimes she just can’t have it. No matter how good it looks. She is now in second grade and has outgrown her milk, soy, oat, fish,peanut and almond allergies. We are slowly (one a year) testing tree nuts. We will not challenge the shellfish. She can tolerate a bit of food dye, but we do try to avoid it. It is more dangerous now then when she was little, because she has been able to eat more foods from different sources that she doesn’t want to look different from the other kids.

    My BFF’s son (ana to peanuts) was at school when he was 4 years old. The plan was only approved snacks for the entire class, brought in to the room by the cafeteria staff. The plan was that the staff member, the teacher and the assistant teacher would all check each and every label each time anything was brought into the room. Someone bought the wrong kind of animal crackers. The staff member didn’t look at the label that day, the assistant teacher didn’t look at the label that day, the teacher didn’t look at the label that day- and she passed out the individual serving sized bags to the children. As the children were given the bags, they started opening them and they started eating them. When my friend’s son was given a bag he looked at the label and told the teacher, “I can’t have this kind, it’s not safe or me.” The teacher grabbed the bag, looked at the label and realized he was right. She picked him up out of his chair, and his Epi Pen from her desk, and started running to the nurses office with him. There he was immediately given benedryl and they washed his face and hands, then called his mother. He had once had an anaphylactic reaction from a “safe snack” that had been in a vending machine with snacks that contained peanuts. The reason he know that he couldn’t have that snack in school that day was because he had asked his mother a year before ( when he was three years old) to buy it. She read the label and told him it wasn’t safe. He saved himself. Good thing his teachers listened to him.

    My nephew who has a peanut allergy was in kindergarten and went to art class one day around Halloween. The teacher had been making peanut butter spiders with the previous classes that day. At the door my nephew said I can’t go in there I smell peanut butter. The teacher made him come in and sit at another table. He had a bad reaction just from being in the room. When my sister got there to get him- he was all swollen. The only reason he was still breathing was she had given him his allergy meds that morning so he had some antihistimin in him already. He once ate snack at boy scouts, even though it had a peanut warning, because he was hungry. Then he was afraid that he was going to die and he was afraid to tell anyone, because he didn’t want to get into trouble. He had classmates spit at him (after eating peanut butter) and throw peanut butter sandwiches at him- just to see if it would really kill him.

    My daughter and her peanut allergic classmate were given candy in a goody bag and sent home with them. Luckily they had both been taught to never eat anything without a parent checking labels.

    There are many unexpected situations that come up. When we go to a party where shrimp cocktail is being served and we would leave because everyone was eating it with their hands and touching everything in the house… We had to stop taking books from the library. My daughter once opened a book and immediately starting breathing funny and had a rash. I took the book and it was smeared with peanut butter. It is a hard road for kids with allergies.

    For the last three year we have been dealing with my husband’s actual allergy to barley and milk and his gluten intollerance as well. I have to say he is not as careful as he should be and he hasn’t fully accepted his new reality. My daughter has always handled it better.

    Now for some good news. My BFF’s son who is anaphylactic to peanuts used to be anaphylactic to eggs as well. He has had at least 3 ana reactions to peanuts ( his numbers are off the charts, his family allows no peanuts or tree nuts in their home and they do not eat them either) and one ana reaction to eggs. He grew out of his egg allergy! He can now at age nine eat eggs.

    Sorry very long, and all over the place. Dealing with allergies and GF living are complicated and confusing for many,especially those who don’t have them at their houses. Believe it or not we have lost friendships and do not get invited to many things because of having to deal with our “food issues” is too much. People have been offended when I simply(and quietly)bring safe food. People have a hard time believing that food allergies and being GF are real.

  22. Hi Kris,
    Thanks for the stories — my eyes were bugging out as I read them! Circumstances I had never thought of – yikes! Yes, there are surprises and I tell other moms that we always need to be prepared with medication at all times just in case.

  23. My daughter is 8 and a highly allergic child plus eczema and ADHD. She has Milk wheat corn soy oats eggs nuts peanuts fish and bean allergy. But she keeps sneaking food. Thankfully we haven’t had to use epi pen but it scares me to death. We have talked to her about death and doesn’t scare her bc we are spiritual and have taught her about Jesus. She is use to her skin being really bad even spent several days in hospital bc of skin. We have tried all kinds of consequences but nothing is working please any suggestions would help. We have had drs talk to her but I can’t get her to realize how quick the reaction can happen. We do not keep eggs or nuts in home.

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