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The Misconception That Almost Killed My Daughter

My attempt to be an educated and proactive parent put me in a situation where I found my infant daughter in anaphylaxis. These days, I can fire-up Facebook and see what the latest research says via reputable news sources. The wonders of social media! This can be a good thing if all the facts are presented properly. On the contrary, bad decisions can be made when all the facts are not readily available.

Back in February, NPR summarized a study which states that the majority of children will benefit from early exposure to peanuts. It was suggested that babies can be exposed to peanuts as early as 4 months old to prevent development of a peanut allergy. The same study received recent publicity again in Time magazine.

I’m a fan of evidence-based medicine and decision making, so I’m thinking, this is great news! Prevention is the best medicine! This study is legit. It’s published by the government {National Institute of Allergy and Infectious Diseases (NIAID)}, the sample size is sizable, and it looks like the American Academy of Pediatrics is going to chime-in and endorse too. {In fact, the AAP officially backs the study as of August 2015.} It wasn’t just some blog post by a celebrity stating her experience as fact. It was a controlled scientific study.

Hold that thought.

Because my husband and I don’t have any food allergies, and neither do our families, we thought it wouldn’t hurt to try a smidge of peanut butter with our baby. We had no reason to suspect an allergy. While I would normally check with our pediatrician, we had already been back for 2 rounds of double ear infections and were in between well-checks, so I wasn’t about to call her up for advice on eating peanuts. It seemed like such a remedial issue. However, I figured it wouldn’t hurt to consult a couple of physician friends to get a sanity check. They had also read about the same study and said it seemed safe. I mean, my daughter could be 80% less likely to develop a peanut allergy just like the kids in the study!

It was a Sunday, and we decided it was time to start exposing our 7-month-old to peanuts. I had gone to Kroger earlier that day and used the special machine in the special organic section that crushes fresh peanuts into peanut butter right before my eyes. I thought, “Man, my kid doesn’t know how good she has it.” The peanut butter came oozing out of the machine like soft serve, and I marveled at the beautiful aroma. We get home, and I give her less than ¼ of a teaspoon of peanut butter just to try it out and see if she reacts. LESS THAN a fourth of a teaspoon. In layman’s terms, that’s a pinch of peanut butter.

peanut_allergy

Within minutes, my poor daughter was itchy. She was scratching her neck. Next thing I knew, her hands were swollen. Hives were covering her neck… then her torso… then her legs. She looked like she had gotten lip implants with the amount of swelling that was happening. Her eyes had gotten so puffy that she couldn’t open one of her eyes. I felt as if we were moving in slow motion as we administered Benadryl. Her breathing was fine, but we made a call into the pediatrician and were prescribed an EpiPen. {I later learned that we should’ve taken her to the ER after administering the EpiPen.} After a couple of rounds of vomiting and diarrhea, my baby girl cleared the peanuts from her system, and we all survived our first experience with anaphylaxis.

A well-child visit and an appointment with the allergist later, we confirmed that my daughter tested positive {via prick test} for peanut allergies among other things.

Now, back to the controlled scientific study. We told our allergist about the study, and she knew exactly which one we referenced. She brought the following information to our attention. Children were excluded from the study if any the following criteria were met {full list here} ::

  • The child tested positive for peanut allergy via prick test
  • Family members had a suspected peanut allergy
  • The child had asthma

Essentially, the researchers worked with a skewed sample of participants. They hand-picked participants who had a higher likelihood of proving the hypothesis that early exposure to peanuts would promote tolerance.

I was shocked that such information was not disclosed by neither NPR nor Time. I had to click-through to 3 different sites before I found the information on the children excluded from the study. This didn’t seem right. Excluding such information misled me, a concerned parent, into making an almost fatal decision. I get that the probability of peanut allergy was low, but the risk surely was very high.

So why am I telling this story on the Internet and putting myself in a position where strangers will question my competence and intelligence? Because I don’t want anyone else to go through the stress, worry, and fear that comes with your child having an anaphylactic reaction… all because of the empowerment felt after reading either NPR or the Time article. The next time I read an article that cites the latest research that challenges conventional wisdom, I will push pause. It’s one thing to be a thought leader with technology, fashion, and other lifestyle concepts. It’s another to adopt medical advice for my child’s life based off a summarized article, no matter how credible the source and no matter how small of an issue I may think may be. We have definitely learned from this episode and are taking a more controlled approach to allergen exposure with our son per the guidance of our allergist. We learned the hard way how serious common food allergies can be and will not repeat the same mistake.

12 Responses to The Misconception That Almost Killed My Daughter

  1. Betsy September 4, 2015 at 7:34 am #

    Very scary! So sorry you experienced that. Thank you for the reminder to be vigilant in understanding the research that guides us in caring for our little ones.

  2. Jane September 12, 2015 at 11:26 am #

    This is a case of bad luck. Even if you had “gotten permission” from your pedi, this was going to happen. No pediatrician skin pricks every kid before starting peanuts. Your kid has no asthma and your family has no peanut allergies. Even the AAP statement says that it’s safe to trial peanuts early in high risk kids. Your kid wasn’t even high risk. You did nothing wrong and, while your article may help you clear your conscience (of doing nothing wrong, I repeat), it will make others scared to do something that, on a population level, is safe and smart. In your individual case, a scary thing happened, but in general, early introduction of peanuts is a good thing.

  3. Alicia September 12, 2015 at 12:25 pm #

    There was another study that showed children that had received multiple doses of antibiotics had a higher risk of a peanut allergy. It was related to the antibiotics killing the healthy gut bacteria.

    Neither of my two children have had problems with ear infections or situations meeting antibiotics yet. They are two and nine months. Anyway we were lucky though somewhere around when my baby was around 5 months, the two year old decided to give him a big peanut butter kiss. Thankfully I only noticed because the kid was licking his lips like a crazy baby and not because he was having a life-threatening allergy. There is probably a lot of middle ground though between introducing peanut butter after age three and before age 1.

  4. Rachel September 12, 2015 at 2:40 pm #

    So glad your daughter is okay, and so sorry you had such a scary experience. I feel like I’m missing something because I don’t understand what was wrong with the study or how reporting it differently would have changed what you did? I also have an infant daughter, and also have introduced these allergens earlier because my understanding from the study was that waiting to introduce is associated with an increasedlikelihood of allergies. It seems like that’s still true, and the study is still sound (these three exclusions don’t seem crazy as a layperson), but that your daughter was unfortunately going to have this allergy regardless. I have zero critique of you, I promise – I just honestly am totally lost.

  5. Leigh September 14, 2015 at 11:01 am #

    Wait, what!? You decided to self-implement a study based on only what you read in a popular press news article? One click and you could have accessed all of the methods section in the actual article. Of course a half a page news article doesn’t provide comprehensive details of a scientific methods section! Moreover, the authors did not skew their data – your child did not fit their sampling criteria (and they took precautions to ensure that they did not do exactly what you did!). My God. People, please don’t play scientist in your free time. Ask your doctor. http://www.nejm.org/doi/full/10.1056/NEJMoa1414850#t=articleMethods

  6. Michelle September 14, 2015 at 3:34 pm #

    I’m so sorry you went through that, and I’m glad your little one is OK! How scary! I read the study, and I was aware that they excluded children who were known to be allergic or had a family history. This made sense to me because it would be unethical to give peanuts to a child with an allergy or high risk just for the sake of science. I believe this was taken into account when stating the statistics, and I don’t believe it was done in an attempt to deceive the general public. I very much agree that we parents need to consider the source and consult professionals before taking advice from the internet. Thanks for sharing your story.

  7. Jackie September 14, 2015 at 10:34 pm #

    You may also be interested to know that this “study” was funded by the Peanut industry. I wish I was making this up. Also originally published in the New England Journal Of Medicine. Highly unethical skewed study with a major conflict of interest. I host an advocacy group on FB and are number since the “study” are staggering. Take a look at Robyn o’briens “science for sale” article.

  8. Chelsea September 15, 2015 at 5:14 pm #

    There are three misconceptions in this article, but they aren’t quite what you say they are. They are rather (1) that the original study cherry-picked its sample to bolster support for its hypothesis and that this discredits the results; (2) that the articles in Time and Newsweek did not report sufficient details of the study sample; and (3) that you made a near-fatal decision based on your understanding of the evidence.

    First, the original study is readily availablefor anyone to read in full: http://www.nejm.org/doi/full/10.1056/NEJMoa1414850. As to the sample selection, the exclusion criteria do state that children with a known peanut allergy or a peanut allergy in their immediate family were excluded, as you linked above. However, the sample did include children who tested positive for a peanut allergy via a skin-prick test but had only a mild or moderate reaction (wheal size <4 mm)—91% of those who tested positive were included in the study. A positive skin-prick allergy test is indicative of a possible allergy but not a guarantee; a negative test almost always means no allergy (see http://www.foodallergy.org/diagnosis-and-testing/skin-tests). These children were given peanuts on a limited scale to minimize danger, and only 11% of these children with a positive test developed an allergy versus 35% of children with a positive test who avoided peanuts. Thus, the study shows that even in children with possible peanut allergy as indicated by a skin-prick reaction wheal of <4mm, allergic reaction is minimized via the early introduction of peanuts. Children who are already allergic to peanuts are, well, already allergic.

    Your daughter had a positive skin-prick test, but what was the size of the wheal? Would she have been excluded from this study? Odds are she would have been included. You seem to believe that these exclusion criteria invalidate the study; however, they make sense because the purpose of the study was to examine the development of peanut allergy in children who otherwise do not have that allergy or who we only suspect may have that allergy. It would not be relevant or ethically responsible to expose children to peanuts when we know or highly suspect they are allergic. The authors clearly state this in their article and that the risks of introducing peanuts to these children are unknown.

    Second, you state that these details were not reported in the articles in Time (http://time.com/3719341/peanut-allergy-cure-treatment/) and Newsweek (http://www.newsweek.com/giving-infants-peanuts-reduces-chance-becoming-allergic-308913). Indeed, these pieces do clearly report that the sample was divded into groups with and without positive skin-prick tests, indicating children with possible allergies were included, which again covers 91% of cases. I agree that they could have been more clear that children with extreme reactions (those 9%) or known allergies or strongly suspected allergies were excluded. However, reading the original study, which is again readily available, would have cleared up these issues.

    Third, you stated that you made a "near-fatal decision" by introducing peanuts to your daughter. I am sorry your daughter had an allergic reaction—that's terrifying. But your understanding of the research is not to blame. You made the logical choice to introduce peanuts when and how you did. When reading research a person has to know how to generalize a study sample to the population—in this case, your daughter fit the study sample (children with no known family history of peanut allergy) and thus the results generalize to her. Statistically, she should not be allergic to peanuts, and introducing them early should minimize that risk. However, it's still possible that she could develop an allergy, and she did.

    If you had known about the exclusion criteria, would you have waited to introduce peanuts? Would you have gotten her an allergy test? Nothing in the science gives you any foundation to warrant giving an allergy test. Doctors do not routinely screen for food allergies with no other known risk factors; instead, they recommend starting slowly with new foods, which is what you did by giving a smidge of peanut butter. Even with the positive allergy test you have now, the doctor probably still would have advised you to try peanuts gradually—as the researchers did for 91% of children with a positive test and as you did—and she probably still would have had a reaction. If you had waited to try peanuts, the odds of her having a reaction would likely have even increased. There is one scenario that saves you from this situation, and that's where you decide to get an allergy test without any basis of concern and that test shows an extreme reaction and you decide to never give her peanuts in the first place. But that's an unlikely case. You made the logical decision. Being more informed wouldn't have prevented her reaction.

    I completely agree that parents should make decisions about food allergies on the basis of advice from doctors and not after only reading news stories. However, I would caution readers of this blog to follow that advice as well and not discredit good scientific research because a blogger had a scary incident of discovering a peanut allergy.

    I hope that you have found a better way of introducing foods to your family and that you don't have any other scary incidents.

    • Jen February 2, 2016 at 12:24 pm #

      YES. Thank you!! I knew about the exclusions from reading the original article (which I found after reading the npr one) and chose to give my twins peanuts at 6 months. But we did it in as safe a manner as possible- in the morning, pediatricians office open, with other foods they had 5-7 times before to rule out any other potential allergies. And as soon as hives had started we would have been on our way to the ER and on the phone with the pedi’s office (thankfully, they didn’t. No allergies here).
      I don’t see how doing anything differently would have changed things. With no allergies in the family, the pedi would not have done a skin test first, so it would have been the same.

  9. Maria September 23, 2015 at 11:15 am #

    I am glad your son is safe. My son was 4-6monyhs and being breastfed when he started to have severe eczema, which is how we discovered he was allergic to dairy, eggs, nuts, sesame, soy, shrimp and wheat! Luckily he’s 4yrd old now and has outgrown shrimp, soy and wheat. Hopefully we can find a way to prevent food alergies soon.

  10. So March 12, 2016 at 7:31 am #

    Here’s something interesting I thought you might like to know.

    Our son who has eczema reacted to a smidgeon of peanut butter. Not badly, but bad enough to realise he’s got a reaction (not anaphylaxis).

    He has a more minor reaction to other peanut products.

    He, however, does NOT react to roasted peanut.

    Not sure what it says about peanut butter.

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