When a Food Challenge is Unsuccessful

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Superman has had 8 food challenges, and 6 of them have been SUCCESSFUL.  He’s passed, soy, oat, cherry, strawberry, almond, and mixed tree nut.  The two that have been UNsuccessful have been baked egg.  You can read HERE about his first baked egg challenge when he had an anaphylactic reaction. Ironically, this time around it was almost an exact replay of his first baked egg challenge.  The one exception, is that it happened so much faster this time.

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

 

At 9:20 I took a picture of Superman and I after his first “dose”, 1/4 of a cookie.

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

Right after his first bite of baked egg cookie.

At 9:52 I took a picture of him right after he had his shot of epinephrine.

What happened in just 30 minutes, was something I want you to learn from, so you can see the progression of an anaphylactic reaction.

Superman first ate 1/4 of the chocolate chip cookie.

About 5 minutes later he got really sleepy.  I didn’t think much of it at first (except a flashback to his first baked egg challenge), because he had trouble falling asleep the night before due to being excited and a bit nervous.

He started rubbing his eyes here and there.

He complained that his stomach was hurting, and thought he might have to go to the bathroom.  My husband took him to the bathroom, since he hadn’t had a bowel movement in a couple of days (sorry, TMI….but part of this equation), but he didn’t have a bowel movement.

It was time for his  vitals check (every 15 minutes during food challenges) from the nurse and the doctor.  We alerted them to his sleepiness and the doctor said his heart rate was normal.  Normally, our allergist said, heart rate would rise in the effect of lethargy from an anaphylactic reaction.  Because of the stomach pain, sleepiness, and rubbing of the eyes we decided to wait an extra 15 minutes before we gave him the next “dose” of cookie, which would have been 1/4 of a cookie.

Superman went back to watching his movie, while we waited to see if he could have the next portion of cookie.

About 6-10 minutes later he was complaining of even more stomach pain.  We convinced him to try the bathroom again, still truly thinking it could either be hunger (food challenges are done on an empty stomach, so he’d had no breakfast) or a bit of constipation.

As he stood up to go to the bathroom, his face got pale and he said something to the effect of, “I don’t feel good” and “I need water”.  I got up to get the nurse or doctor, and as I walked out the door I could hear him vomiting behind me.

At that point the doctor was walking in and it was no question that he was experiencing an anaphylactic reaction as he vomited a second time.  Epinephrine was given immediately and the reaction stopped in its tracks.  I’m going to say that again.  The REACTION STOPPED IN ITS TRACKS.  I’m repeating that to remind you of the life-saving power of epinephrine and why you should carry TWO auto-injectors with you at all times.  (I’m pretty passionate about spreading that news.  Epinephrine has saved my child’s life 3 times now, and I’ll sing it’s praises until there’s a cure for food allergies.)

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

After his shot of epinephrine, and asking for a band-aid.

Why did we go ahead with this food challenge?

Our allergist, my husband, and I, felt he was really ready.  His most recent blood test results were very low.  Despite a small positive reaction on a skin test last year, everything still showed a green light for a BAKED egg challenge.  According to this article on American Academy of Allergy Asthma and Immunology (AAAAI), those that can tolerate baked egg are more likely to outgrow their egg allergy and then tolerate regular egg.

His component testing results were:

Egg White specific IgE 0.75.
Ovalbumin is 0.89, and ovomucoid is 0.35.

Ovalbumin is the main protein found in egg white, making up 60-65% of the total protein.
Ovomucoid is a trypsin inhibitor found in raw egg white.

I found this article interesting as I was researching ovomucoid.

Do I regret doing the food challenge?

No.  I can’t beat myself up over something that I made an educated decision on.  I never would have agreed to it if there was any doubt in my mind.  Our allergist was completely surprised that he didn’t pass, and I know he wouldn’t have suggested the challenge if he doubted that it would be successful.  What I learned from this experience is that LETHARGY is his first symptom to an anaphylactic reaction upon ingesting baked egg.  We are to use his auto-injector upon known ingestion of an allergen, or suspected ingestion with the symptom of lethargy.

What’s the takeaway?

Food allergies are unpredictable.  Food allergies are different for everyone, including the type of reaction, and not excluding a person’s tolerance for an allergen.  What I DON’T want you to do is compare your child’s blood test results to my child’s and make a prediction, or base decisions off of our experience.  What I DO want you to do, is talk your board certified allergist about future food challenges and make a plan based on your set of allergies and testing results.

P.S. **Never do a food challenge at home.

The good thing is that he was able to still enjoy a birthday party that afternoon with friends at the local splash park.  He took it easy while I watched him like a hawk for a biphasic reaction.

When a Food Challenge is Unsuccessful~Mom Vs. Food Allergy

Having fun at the splash park!

**Disclaimer:  I am not a medical professional or doctor and this website is not intended for medical advice.  Please consult your board certified allergist for medical advice.  Do not attempt food challenges at home.  In an emergency, call 911.

Has your child had a an unsuccessful food challenge?  What did you learn from it?  Please comment below and share your thoughts!

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48 thoughts on “When a Food Challenge is Unsuccessful

  1. I am so sorry he failed his challenge. I cannot believe how unpredictable egg can be! That are certainly low values and I agree that you could not have anticipated such a reaction, based on those numbers. We really need access to better testing methods, so we don’t have to play such a “guessing game”. (((HUGS))) to you and your sweet boy!

  2. Yes last year we tried a wheat challenge. We were successful at the allergist. We continued at home and after 3 days and we got up to 6 wheat ritz crackers his skin started to break out in a rash. Then really bad excema. We waited to see and after the rash cleared tried again (per the allergist) same results. I felt bad because he was so excited to be able to try a new food. He has wheat, oat, egg, dairy, peanut and sesame allergies. (Along with 6 medicines he is allergic too)

    • Oh, that’s tough when they react days later. Food allergies can be so disappointing, but you’re not alone!

  3. Many hugs Superman!!! You are so brave for taking these food challenges! I can’t wait to see your smile and give you a big hug!

    Super MOM – you are just that!

  4. my 3yo DD failed baked egg last June and again last month. What I learned was that her two anaphylactic reaction were completely different from each other, never rely on the same symptoms.

  5. Thinking of you all – even though I knew from facebook that it had happened and that everyone was ultimately okay – reading it had me holding my breath all over again.

  6. I’m sorry he did not pass, but grateful for this very well written and documented experience. You are so positive and handled the situation very well. Your son is lucky. We are lucky too that you are helping us understand that not all reactions are equal. Thank you for writing this important piece. I hope everyone shares it.

  7. Such a well written story, thank you for sharing your experience. My 12 year old had a successful food challenge with baked milk in the office. We pushed it in the office and knew right away what his limit is with the baked milk. While that day was a bit stressful for us both, it pales in comparison to the struggle we have at home sticking to the exposure to the baked milk. The line that gets me is “How can you ask me to eat something we know can kill me? ” UGH!! He’s old enough to reason with me and it’s a definite struggle. :( I tell him I really do not care if he ever tolerates a glass of milk but my end goal is to lessen reactions. He’s kicked an egg allergy and I’d love for him to kick this one, too!

    • Good luck with kicking that dairy allergy to the curb. That’s my dream as well, to kiss dairy goodbye!

  8. My daughter passed a peanut food challenge last summer (afte successfully eating 65 Reese’s pieces) After that we were told to continue giving her peanuts on a regular basis. The only form she would eat them in was peanut m&m’s. She did fine for about a week and then started vomiting exactly 2 hrs after eating them. The second time it happened we realized it was the peanuts (first time we thought (hoped) maybe it was just a stomach bug). That time I used the auvi-q because she vomited repeatedly and said her throat felt funny and she just didn’t feel like herself. She has always tested low on her bloodwork and continues too but has had 2 anaphylactic reactions since she was diagnosed at 16 months. (She’s now 5) The allergist would like to challenge again in a year but I feel like I have lost faith in food challenges. He feels that she has a tolerance level where 65 Reese’s (equivalent of 2 peanuts) won’t effect her, but more will cause a severe reaction. But how do we know for sure? He advises to continue to avoid, so for now we don’t worry as much about cross contamination but still avoid peanuts at all costs and always carry epi. And pray pray pray that she truly will outgrow it.

    • My little had the same. Last year, when she was 5, Her blood test was negative, though her skin reaction was high. We had the challenge at the hospital. She passed, though she did say the peanut butter itched her tongue. All vitals were good, so they continued. She passed. We struggled to get Peanut into her every day.. She always complained about an itchy tongue. I chalked it up to the texture. About 3 weeks later, her lips swelled up when she was eating an apple and peanut butter.. Again, I chalked it up to a reaction to another allergen, because she passed the test, couldn’t be the peanut. Next day, same reaction. She is now back off peanuts. I believe the tolerance level may be her issue. Right now, we don’t stress over may contains(though we try to stay away from them). I’m not sure about doing another challenge anytime soon. She is also allergic to fish, but her reaction was so immediate, and she developed it when she was 4, I can’t imagine doing a challenge. Her blood test is negative there too… But, skin testing, she is allergic to 11 fish and mollusks. It’s a tough decision for parents.

      • Food challenges are definitely tough decisions for parents. But, they are the only true allergy test. We just have to keep striving to do our best for our children!

  9. My son is allergic to milk, eggs and anaphylatic to peanuts. We’ve been testing and monitoring his allergies since he was 7 months old. His last skin test showed negative for both milk and eggs, and the blood test from his milk is low enough that his allergist wants to attempt the food challenge. I’m nervous, but cautiously optimistic. He’s able to eat baked milk and eggs without any reaction and he’s at the point where he can also eat baked cheese (still small amounts at this point). I’d love for him to pass his milk challenge, but I know there is still a possibility he may not. I’m sorry your son failed his baked egg, and I wish you luck that one day he does.

  10. I’m sorry to hear he failed this food challenge. My younger son failed his oral peanut challenge after successfully eating all the pb but began reacting during the wait period. Am I glad he did it? Yes!!! He had never had a reaction before as he was diagnosed through testing not reaction as his older brother is allergic. Now he knows what it feels like and what signs to look for.

    • It’s tough for them to have a reaction, but it’s a learning time for all. Sorry he reacted late in the game, but thankfully you were still there.

  11. Thank you for this post. My daughter is 4.5 and has several allergies. It seems everytime we test there are more rather than less. We have our first challenge to baked egg on August 11th. I am terrified and excited all at once. I really just want her to have at least one positive allergy experience. So far we have gotten very excited about testing a number of times only to have bad results. We have one previous aborted baked egg challenge a year ago too. Her skin test was very high that morning so we never even got started. Hoping it is very different this time!

  12. Thank you for sharing your story. We are currently contemplating a baked egg challenge. I was intrigued to read that your son ate a cookie. Everything I’ve read (and all the protocols I’ve heard about) indicate that baked egg challenges should only be done with an item that has been baked a minimum of 350 degrees F for 30 or more minutes (long enough with high enough heat for the shape of the egg protein to be transformed so the body of an allergic person can tolerate it). So I was under the impression that cookies were almost always out. I wonder if your doctor has a different idea of what qualifies for a baked egg protocol? (I’m always trying to learn more about different allergists’ approaches….)

    • I just recently heard that, too. I was given the choice between cookies or muffins. I’m guessing my allergist has a different school of thought on all this. Next time, I’ll choose muffins! I’ll be discussing it with our allergist, also.

  13. We had a peanut challenge for my then 3 year old. His brother has multiple allergies with his most severe as milk, peanut, and tree nut. My 3 year old had never had peanuts before and his skin prick test and blood work both showed up as negative. He did great in office but later had raised welts on his bum that burned him after his bowl movements. So, not severe, but still a ‘hey don’t feed me peanuts’ reaction.

  14. I think these challenges should be stopped immediately. Its like asking you to prove you are telling the truth about a serious reaction…why should you have to put someone through this? It is crazy to put someone to so much risk they may die from an anaphalactic reaction.

    • I’m assuming by your comment that you don’t have experience with food allergies with yourself or someone you know. I’m also questioning if you even read the entire post. You have a right to your opinion, but I disagree. And no one is trying to *prove* anything. I know many people have died from food allergies, but to my knowledge no one has died from a good challenge while being monitored by a medical professional.

    • I don’t think anyone is asking for proof about a serious reaction. A food challenge is only done after other tests are done, not necessarily to prove that you have an allergy, but to rule out a false positive/negative or to test if an allergy has been outgrown. They’re done in controlled settings so unlike accidentally eating something and discovering your allergy still exists, or that maybe you have an allergy to something you didn’t know about by going into anaphylaxis at home or at a restaurant, you test a specific food with medical staff available. If you fail the test, that means strict avoidance continues out in the real world – calling manufacturers to ask about shared lines, bringing your own food to restaurants and parties, avoiding cross contamination at all costs. If you pass the test, that doesn’t even mean you’ve outgrown the allergy, but that perhaps you can tolerate tiny amounts of your allergen in cross contaminated food without the fear of going into anaphylaxis. My son tested positive for several foods that he had never in his life tried before and since the rate of false positives with current skin and blood allergy testing is pretty high, a food challenge is the only way to know if he will ever be able to safely eat some of those foods. So when he’s old enough and willing to take on a challenge, we’d rather do it under the supervision of a doctor than play with fire and have him sample those foods on his own.

  15. We failed a peanut challenge, and I decided I don’t want to do food challenges again until my preschooler is older. Just knowing his blood and skin tests are negative makes me feel better about sending him to school. But I still dream of the day he outgrows his nut and egg allergies.

  16. Thank you for this, and I’m sorry you didn’t get the results you were hoping for. My 4 year old has her first food challenge (milk) in 3 weeks. She had anaphylactic reactions to milk at 6 months and 1 year old, and she had always tested positive in skin and blood tests. Last month her blood test came back negative. I’m nervous but hopeful. Her soy levels have changed from positive to negative too, so that will be next. We are crazy paranoid about exposure to the point where I get anxiety and avoid any potentially risky situation with her (birthday parties and restaurants), so I’m hoping these are true negative results and not just her body forgetting the allergen.

  17. I’m so sorry you guys had to experience this. Thank goodness for epinephrine. A friend told me once that she is almost thankful for her son having to use an epipen after a food challenge. Just so he would know how serious his food allergies really are and how careful he should be. I guess we have to look at these experiences in some sort of positive light somehow!! Sending happy thoughts to you and your fam.

    • I guess if he had a reaction, I’d want it to be with the allergist. We now know his symptoms. We’re hoping for better results if there is a next time to challenge baked egg. Thank you for the kind thoughts!

  18. So glad you wrote this post. Very interesting. So many people seem to think a challenge is going to be easy–well, why don’t you try, I hear? Well, we did one for soy, something I fully expected my son to pass and because there was a tiny itch, a 1 on a scale of 1-10, he was considered “allergic” by the allergist. The weird thing is, they immediately gave him 3 doses of benadryl and a few minutes later my son felt that sudden lethargy you describe above and fell asleep on my lap (he is 10…definitely not normal!), and I have been confused for months as to whether this was anaphalaxis or because of the benadryl? They continued w/ albuterol, and then the auvi-q and monitored us for the next 4 hrs or so… Thanks for sharing, I’m thinking maybe in our case, the lethargy too is part of the anaphalaxis cycle and I’ll look for that next time. Food challenges are not to be taken lightly, are they? I have been wondering if I should have never had him do this–but you are right, it’s done, time to learn from it and move on!

    • At a recent challenge, the nurses were calling this “change in affect”–when a normally energetic child just crashes (or gets cuddly, or sleepy, or really any way in which their behavior changes.) It makes perfect sense, they’re starting to not feel well in a way that maybe they can’t even describe yet.

      Not sure about your situation though, since a triple dose of benadryl would be enough to make anybody sleepy. Your doc certainly doesn’t want to take any chances, but I’m sorry that left you with still-unanswered questions.

  19. I meant to read this weeks ago but it got lost among open tabs. I’m sorry he failed, but at least you still know that you aren’t limiting his diet unnecessarily.

    I’m with MK above though. We just entered our son in an egg allergy clinical research study, which in his group involves eating baked egg. He failed baked egg three years ago but just passed it this summer. All of the recipes for the study must be baked at 350 degrees for 30 minutes–there are a few with a higher heat and shorter time, but only slightly shorter (400 for 25 minutes, for example.) I have yet to meet a cookie that meets this criteria (I’m allowed to use my own recipes so long as I approve them first, and I’ll be looking, but haven’t gotten there yet.) Cookies are so small that the food is done before the eggs have cooked long enough to be denatured all the way, or so I understand. I’d definitely chat with your allergist.

    Hoping he’ll pass baked egg in the future!

  20. I am 20 years old and just received a call from my allergist saying that my IgE level for milk is finally low enough to do a baked food challenge so of course I went to google to read all about this and came across this story. I have had allergies to dairy, eggs, peanuts, tree nuts, banana, and kiwi all my life and I can’t even comprehend the fact that I may now be able to try something with dairy in it. Reading your story was helpful to me and also interesting because I read through the comments and found only young children experiencing these food challenges. I figured my insight into this might be helpful so here it is: Absolutely have your children go through these food allergy challenges at a young age because it only gets more difficult dealing with allergies as you age. Your children will not blame you for making them go through it and I’m sure they will be extremely thankful if they outgrow their allergies due to these challenges. If you are given the opportunity to do the challenge take it! Also, thank you so much for including the IgE levels of your son as I think that is helpful as a reference point. It is crazy to know that someone with such low levels could still have an anaphylactic reaction.

    • Best wishes to you for your baked dairy challenge. I’m sure it’s nerve wracking yet exciting at the same time!! I hope all goes well :)

  21. Hello! I was wondering if your son has had any additional egg testing or food challenges since this post. My daughter was diagnosed at 14 months and is severely allergic to egg. Her IGE tests were 6.13, however her skin prick test was barely positive. Until we had the IgE testing, her allergist actually thought the skin prick test was a false positive. My daughter vomits after eating eggs and has intense lethargy. We go back to the allergist the end of March. She will be 20 months.
    Thank you for this Blog. I’m praying that they find a cure for all food allergies soon.

    • Hi Krista! No, we haven’t had any additional testing since this failed food challenge. We go for more testing in May and a follow up visit with the allergist. I’m hoping we’ll get good news since it’ll have been almost 2 years since this food challenge. I’ll try and update after the appointment. Good luck with your little one! -Rachel

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