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Son’s Delayed, Serious Allergic Reaction and My Guilt

As food allergy parents, we are so diligent in removing possible allergic foods in our home. We read all the labels thoroughly and buy only food we know is safe. So, how did my son have an allergic reaction at home today? I honestly have no explanation. I feel like a professional label reader. I can spot hidden sources of dairy, gluten and soy, like a champ. Nothing escapes these eyes. Not until recently that is.

I am embarrassed, ashamed, sad, and mostly I feel guilty that I let an obvious food allergy into my home and into my trusting son’s cereal bowl this morning. He is so good at asking me if a new food has allergies in it. Anytime anyone wants to give him food, he turns to me and asks if it’s safe. He’s so confident in me. But I made a mistake. Thank heavens he’s ok, but still, this one is all on me. Mom is not perfect – that’s probably a harsh lesson for any child to learn, but one they must.

What’s so odd is that he actually consumed this particular allergic food two times in the past week without any obvious reactions. But this morning, a few minutes after beginning on his bowl of cereal, he started to get pink around the mouth. A few minutes later his wrists became itchy and he asked me to tickle them to help him avoid scratching (that’s our little trick which he loves). This happens from time to time – he gets a little itchy and most the time we have no idea why (since we avoid all his major food triggers now). But, I was watching him carefully since the itch was combined with the pink around the mouth. Then a few minutes later he started coughing. My alarm bells went off. This never happens. The only time I’ve seen these reactions together was when he reacted to dairy during a food challenge over a year ago. Now I was officially worried. Other than the pink around the mouth, he looked ok though and was acting fine. I asked him how he felt and he said he wanted his medicine. So, I gave him his antihistamine and two puffs from his Ventolin as a precaution. The coughing continued and then he tells me his throat hurts. OMG, is his throat closing?!! Ok, now I’m officially on full alert and up to get the EpiPen. I sit by him and watch, asking him constantly how he is. The Ventolin kicks in and shortly after so does the antihistamine and the crisis is averted. Overwhelming sense of relief. We didn’t need the EpiPen, but we were VERY close. I always tell people that my son is not anaphylactic, that he’s never had a true anaphylactic episode, but now I’m not so sure.

Just what was this offending food? It was granola. The ingredient that almost led to an ER trip? Spelt flour, a type of gluten. The sad part, I know spelt is glutenous. But, I somehow overlooked the ingredient. I remember scanning the label on the box for at least a few minutes at the grocery story. I remember being so excited that it was free of all Tristan’s allergens that I bought four boxes so we wouldn’t run out. Ironic.

What I find so odd about this story, is that Tristan had eaten this cereal twice in the past week and was fine. The first time, no reaction at all. The second time, he was very slightly pink around the mouth (but we see this every once in a while and aren’t sure what it’s in relation to, so didn’t make the connection with the cereal), then the infamous third time – you now know the scary story.

Another interesting fact, Tristan has never reacted positive to gluten in standardized blood or skin allergy tests. He was tested once at one year old and again at three years old. But look how he reacted today. What does that say about allergy testing? It’s why we’ve come to rely only on our son’s past reaction’s to food, the elimination diet, and food challenges.

So, I suppose the moral of this story is that we can be lulled into a very false sense of security as allergy parents. We feel confident that we’re being diligent in allergy proofing our home, but in fact, we can make mistakes. I sure did. I feel horribly guilty, but that doesn’t help my son. I have to buckle up, keep my eyes peeled for the next offending allergy trying to strike, and be ready if/when it does.

Have you experienced false negatives in allergy testing? Have you or your child reacted to a food only after consuming it several times first?

30 Comments Post a comment
  1. Tracey #

    You need not feel guilty, although I understand and have felt the same. You learned something life-SAVING from this experience and you and your son have even better communication about symptoms as a result. Give yourself and your son a pat on the back for staying cool under very anxiety-inducing circumstances!

    Like

    July 17, 2013
    • Thank you Tracey! I guess we’d drive ourselves crazy with guilt if we didn’t try to have a positive take away, so in this case I should definitely remember that I learned something. Thanks for that reminder 🙂

      Like

      July 17, 2013
  2. Thanks for your honest story and sharing that we are all human… doing the best we can to help our kids manage food allergies~ We all have our stories… I know I do~ Daniella

    Like

    July 17, 2013
    • We are all too human and we make mistakes – thankfully the outcome from this mistake wasn’t too dangerous, this time. Here’s hoping that we don’t have any more stories to add to what we already have in our collection!

      Like

      July 17, 2013
  3. Tammy #

    “Another interesting fact, Tristan has never reacted positive to gluten in standardized blood or skin allergy tests. He was tested once at one year old and again at three years old. But look how he reacted today. What does that say about allergy testing? It’s why we’ve come to rely only on our son’s past reaction’s to food, the elimination diet, and food challenges.” I’ve seen this to be so true…they can’t be 100% accurate. Bless your heart, there’s so much to check; it can overwhelm your mind!! I know!!

    Like

    July 16, 2013
    • Thanks Tammy for the words of support!

      Like

      July 16, 2013
  4. I’m sorry that you an your son experienced that. It’s never easy seeing our little ones go through anything like that. I’ve had instances where I thought a food was fine for my son, only to realize there was indeed an ingredient that he couldn’t have in it.

    To answer your question, yes, we’ve had false negatives. My 3 year old has been anaphylactic to peanuts and eggs since 15 months old. Last summer, his blood work showed negative for peanuts, and a huge drop (and close to negative) for egg. We did the in office egg challenge first, and he initially passed it. I started giving him foods with baked in eggs (cookies, etc), and a few weeks later he had another anaphylactic reaction to the eggs. Following that we did the in office peanut challenge, but he failed it after the 2nd dose of peanut butter. We’ve since learned that we can’t rely on his blood work, and only do skin testing.

    Like

    August 25, 2012
    • Hi Melinda –

      I just read your anaphylaxis experience on your blog. What a scary thing you went thorugh! My heart goes out to you guys. It’s hard living every day monitoring all the food, worrying what could happen. We can only try our best. Best of luck to you guys. Also, just a heads up, I couldn’t find your Twitter account from your blog – I wanted to follow you. Jennifer

      Like

      August 28, 2012
  5. trailofcrumbsblog #

    Reading this blog makes me so thankful that my daughter isn’t allergic to anything…well…as of yet. She just turned 4 and so far I have been blessed with her being able to eat everything. But reading your blog makes me feel bad that there are Moms out there who have to be really diligent about allergies. However, you are the expert and things happen. Don’t bear yourself up on it. You are still a great mom and devote so much time to this. Anyone can see that. Great job! – Nicole

    Like

    August 24, 2012
    • I’m very happy for you as well that your child doesn’t suffer from any allergies. It’s definitely difficult, but there is so much online support. It’s really a great community. Jennifer

      Like

      August 24, 2012
  6. I am so so sorry for your misfortune. I think about all the reactions, thankfully relatively minor, that my son had before we really knew he was allergic and how lucky we really were. Even now, very seldom, something will slip past me. It’s almost inevitable and we do the best we can each and every day to protect our food allergic children. And then thank God for medicine if something does get into them that shouldn’t. I’m so very glad that his medicines worked. You are to be commended for how hard you work every day, every meal, every snack to protect your child.

    Like

    August 21, 2012
    • Yes, thank goodness for medicine and for our forgiving children. We try our best. Thank you for your kind words. Jennifer

      Like

      August 21, 2012
  7. Jen #

    I’m one of those moms…those moms that are seen as over protective and are a nuisance to the schools…because my daughter has significant allergies to peanuts, dogs, weeds, trees, grass, dust mites, as well as has asthma and eczema. She also developed a new allergy to red dye in January of 2012 and we fought ideopathic utacaria (chronic daily hives with unknown cause) for months. We are still trying to figure out what caused the hives. Her IGE level is 637 and an average kid is 40…the worry and the angst and anxiety with sending my child to school is overwhelming. I read above that your child depends on you, asks you questions about the foods he is eating. My 6 (almost 7) year old does the same thing. I’m always scared to lose her confidence, to miss that one allergy! The scariest allergy at the moment is the red dye…it causes angioedema and huge red, welt-like hives. I recently learned on http://www.allergicchild.com that my daughter is eligible for a 504 plan for health needs under the Special Education Department at school. I have requested a meeting for the start of the school year and I hope and pray this keeps her safer at school. It is so WONDERFUL to read blogs like this and to know how many other people live the same life as my child and me. 🙂

    Like

    August 21, 2012
    • H Jen – Thank you for your comment. Yes, it’s good to know we’re not alone in this overwhelming world of allergies. The red food dye allergy does sound frightening. It sounds like you must have to avoid most processed food at this point, so that’s a positive aspect of the allergy. It’s ensuring your diet is uber healthy. That’s what has made me realize allergies are not all that terrible – they have led us to a much more natural, healthy diet, so I am thankful there is at least that one positive thing about allergies. Jennifer

      Like

      August 21, 2012
  8. This is my worry with my son. He’s allergic to milk (www.nomooforme.com). He breaks out into hives as if he’s been burned and coughs a LOT. I’ve worried that it affects him more than we know since he’s only one and can’t communicate very much.
    Thank you for this post. It helps to hear other parent’s stories.

    Like

    August 21, 2012
    • Oh, poor little one. It’s so hard when they can’t tell us how they feel. We will be able to tell you soon, so that should give you some comfort. At least you figured out that the culprit was milk. Yes, I agree that it helps to read other stories and know we’re not alone in this battle. Jennifer

      Like

      August 21, 2012
  9. Sherry Kearns #

    We had an issue a year and a half ago with lentils. My son (he will be 5 next month) was diagnosed with a peanut allergy at 18mo. We have done a great job in avoiding peanuts since then. Then last January after the birth of my daughter, we qualified for WIC and I bought a bag of lentils (we had never had them before so we thought-why not). I knew that peanuts were a legume, and beans, peas, and lentils were legumes as well. He has ate beans and peas without any problems. The night we had the lentils (he only had a couple of bites), he went to bed a couple of hours later, only to come back upstairs coughing, and complaining that his mouth and throat itched. His lips were swollen. Thats when it really hit me that lentils and peanuts were related in the same family (legumes!) so I called the allergist who recommended I give benedryl and the epi pen and go to the ER. Everything turned out fine but it sure was scary!

    Like

    August 21, 2012
    • Sherry – So scary! But if you hadn’t tried, he could have had lentils somewhere else first where they wouldn’t have been as prepared as you. So, it’s a good thing you tested them out first. Jennifer

      Like

      August 21, 2012
  10. stomponfoodallergiesmomma #

    I have been in a very similar situation and understand the guilt when you child has a reaction. We are very diligent about the food we give our daughter too and what enters our house. When she woke up in distress in the middle of the night and we had to administer the epi pen it leaves you heartbroken hearing your child begging you to “help” them. I can still hear her screaming and see her crying to this day begging me to help her. We have never found out what caused her reaction to this day. There is always that “what if” in your head and I can tell you that I am always prepared but never in a million years did I expect her first reaction to happen in the middle of the night. I sometimes have a hard time falling a sleep and I think that I will always have a tv monitor in her room because that is how we knew she woke up in distress. I am so glad to hear that this story had a happy ending and that he didn’t end up needing his Epi Pen. People don’t understand our lives because we have to check everything. We have to think about everything what is on the floor, doors, toys, bottom of shoes with all these steak houses that throw peanuts on the floor etc….. I love it when you hear people say I would just gave them Benadryl………it’s so much more complex and if it were that simple our doctors would not have given us prescription Epi Pens. I just heard someone say my allergies to hay has never stopped me from doing anything, really?? That is like comparing apples to oranges! People do not understand food allergies and it’s h
    eartbreaking and sad. You did a great job and should be very proud of your reaction knowing that it was serious. This is why I hate leaving our kids because we know when something is wrong and somebody else might not have picked up on those symptoms. You are a great mom!

    Like

    August 21, 2012
    • Thank you for your kind words. Yes, you are right. We are the advocate for our children. We just have to do the best that we can. Jennifer

      Like

      August 21, 2012
  11. Yes, my (now 16 year old) son tested negative to fish at 3 years old. He ate salmon once and said he didn’t like it. We kept him away from store bought fish because of his shellfish allergy and the potential for cross contact at the fish counter. At 10 years old, he was on a camping trip with my husband (his Dad) and ate trout. He went into anaphylaxis within 2 minutes. My husband’s story about this event is halfway down the page here: http://www.allergicchild.com/experiencing_anaphylaxis.html. I feel for you! I was kicking myself for a long time thinking that I should have known better. We all do what we can to keep our children safe, and the rest is prayers – at least that’s what works for me!

    Like

    August 21, 2012
    • Wow, I just read your husband’s story. I had tears in my eyes. I cannot imagine how he must have felt not really knowing how far he was from the ER. Thank you for your comment. You are right, we just have to try our best. Jennifer

      Like

      August 21, 2012
  12. We had a similar thing happen as far as the reaction. My son has eaten watermelon every once in awhile. When he was a baby and toddler, he would get one or two hives but I was told that it could just be from the juice. He always seemed fine. Last summer, we had watermelon for the first time in a long time. My son kept clearing his throat, saying it felt like there was a chip stuck in his throat. Then, I saw panic in his eyes and that scared me (usually it’s me panicking). He asked for his asthma inhaler, I said we need teh EPipen and he argued, so I just grabbed everything. I gave him Benadryl, let him have a few puffs from his inhaler and I waited with the Epipen box and the telephone. It passed and he was ok but I repeated his Benadryl throughout the day and checked on him all night. When I called the allergy doctor to let them know what happened, his theory was that the pollen may have been high and set off the reaction when it normally would not have bothered him (concomitant/synergistics foods) but I feel that since he had previous hives, it’s safer to avoid it. I felt all of the same feelings that you described as a food allergy mom but in the end, he was ok and that’s what is most important. We can only do our best and sometimes our best varies day to day.

    Like

    August 21, 2012
    • Tracy – Wow, watermelon? Yes, it probably is related to seasonal allergies, but I understand how you’d be nervous to try it again. Same happened with my son and cantaloupe, but we nervously tried it again and he’s fine. We’ve been having a lot of luck reintroducing foods lately, so hopefully Tristan’s body is on the mend. Thanks for the moral support, as always 😉 Jennifer

      Like

      August 21, 2012
    • Christa Higgins #

      My son used to be allergic to all melons and tomatoes. He would get hives and facial swelling. His allergist said fruit and veggies are hard to test for. His allergy tests came back and said he wasn’t allergic . I held off for a year and now he is able to eat both.

      Like

      August 21, 2012
      • That’s wonderful he outgrew those allergies! My son outgrew tomato recently as well. Isn’t it so strange how so many times foods don’t appear as positive in allergy testing. Thank you for your comment! Jennifer

        Like

        August 21, 2012
  13. Wow. I’m so glad he didn’t have a worse reaction. My son has a wheat allergy, but we still don’t know what his reaction is. He’s only had one exposure, so I’m hoping that it isn’t something brewing, just waiting for another exposure! And we all make mistakes like that. Before I knew better, we had peanut butter in the house and it looks JUST like the Sunbutter jar. After his dad accidentally gave him PB instead of SB, we spent an evening in the ER. We are now a peanut free house, but I took for granted that while I thought I wouldn’t mix the two up, I didn’t take into account that someone else might feed it to him by accident!

    Like

    August 21, 2012
    • Hi Jessica – Oh, gosh – that jar mix up is an easy one for sure. We’ve had similar things happen. I consider myself Tristan’s allergy guru, but that doesn’t mean his father, caregiver, or grandparents are as in-the-know as I am. It took a while before I realized how so much of his allergy info was in my head and that I needed to document and be more vocal in general. We keep learning, that’s for sure! Take care and thanks so much for the comment! Jennifer

      Like

      August 21, 2012
  14. hsw #

    I made a label mistake with shampoo recently, I am so glad your little guy is okay. We should re-test as it has been 3 years almost but we rely on reactions as you do too. Hang in there.

    Like

    August 21, 2012
    • Thank you and good luck to you with the testing! Jennifer

      Like

      August 21, 2012

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