On Peanut Allergy and LEAP – Why The Conflicting Emotions Among Allergy Parents?

I have been anticipating the LEAP study findings since hearing it was in progress almost 3 years ago. Our son was diagnosed with a peanut and cashew allergy in 2012. In the initial shock of the diagnosis, I started looking for any answers I could find.

WHY did he have this allergy, and what could we have done differently? Was it my fault for eating my body weight in peanuts while pregnant? What about while nursing? Was he too exposed? Underexposed?

When I stumbled across it, I was disappointed that the findings had not yet been published. If you aren’t familiar with the study, visiting the About LEAP page will explain the design better than I can. In general, the LEAP study looks to answer the question of whether avoidance of nuts or consumption of nuts at an early age makes a person more or less likely to develop a peanut allergy.

The site has been bookmarked on my computer since 2012. I’ve checked back often to see if there was any indication of when they would publish their findings. Results were expected as early as 2013, but it wasn’t until February 2015 when results were released.

I’m not the only one who anticipated the study, as is evidenced by the intense media coverage it is receiving in the wake of its release.

When the results were released, I read them with anticipation and excitement. You could check out the summary of results on the LEAP website but I would recommend reading the New England Journal of Medicine article for yourself. All children included in the study were classified as high-risk for a peanut allergy if they had an existing egg allergy and/or severe eczema, and no strong preexisting peanut allergy (strong was evidenced by a skin wheel (or hive) from skin testing larger than 4 mm).

In the LEAP study, of 834 potential participants, 76 had wheels over 4 mm before the study began and were excluded. This means these children were 4 to 11 months of age and already had significant allergy (See Figure 1 – Methods section of the journal article). 76 may sound like not very many, but is close to 10%, albeit from a high risk group of children sought out for inclusion in the study. Groundbreaking study or not, LEAP may be of little help to parents whose children are high-risk for an allergy and developed a strong peanut allergy before they were 4-11 months of ageWhile we embrace that knowledge about peanut allergies is increasing, we are still waiting on and longing for answers as to why these children are at such high risk in the first place.

But there is certainly valuable and solid information here for those children who are not highly allergic before the age of 4 months.

As summarized on the LEAP website, the study yielded these exciting results:

Of the children who avoided peanut, 17% developed peanut allergy by the age of 5 years. Remarkably, only 3% of the children who were randomized to eating the peanut snack developed allergy by age 5.   Therefore, in high-risk infants, sustained consumption of peanut beginning in the first 11 months of life was highly effective in preventing the development of peanut allergy.

A difference of 14% of children developing or not developing an allergy is significant. It means if your child doesn’t already have a strong early onset allergy, but is at risk of developing one, giving them peanut products at an early age may (no guarantees) help prevent an allergy. And, if they have a minor allergy (wheel less than 4mm), they may still be helped by feeding them nuts, although would require supervision and care of a medical professional.

Results like these give parents something they CAN do to help their high risk child. To give them their best shot. There is no mistaking that the results hold very important truth and tangible results for the right circumstances.

It is going to change the recommendations. It is paving the way for further study as we speak. A biochemist by training, MORE information is always a good thing, right?

Not necessarily.

The study leaves me with conflicting emotions. I feel like I’ve been on a roller coaster all week.

When you look at the allergy community, the study has received acclaim, praise, frustration, and resistance.

Why so emotional?

  • Too little too late: Information is power, but now my daughter is 2 and has never eaten a peanut. We are a peanut free household. Our allergist told us she has a higher chance of developing a peanut allergy than other children because of our son’s allergy (a.k.a. our family genes). We were told to use caution introducing peanuts. When I asked if it was OK to wait until her 2nd birthday, there was no indication it was a bad idea. According to this study, we may have now waited one year too long to do the only thing that has been shown to possibly prevent development of a peanut allergy. So, although the study is relevant, groundbreaking even, the findings may not be able to help her. Yet…we pray she may never develop a peanut allergy.
  • We may be resistant: Defensive even. Information published on the internet can be simply false, or taken out of context. The first statement I saw did not mention the LEAP study name, but stated that we should ALL feed peanuts to 4 month old infants to prevent peanut allergy. It was out-of-context and missing important cautions and caveats. Alarming – and dangerous. The post left me feeling skeptical and defensive. It is my duty to read information for myself, and to draw educated conclusions with an open mind. It would be a grievous error to rely on someone else’s write-up, emotions, or opinion. We should be excited that people are spending their time studying peanut allergy and to read their findings, whatever they are. When I actually read the entire LEAP study, I agreed that this study is impressive, important, and demonstrates something we didn’t already know about peanut allergies. It is nothing to scoff at and needs to be taken seriously. But it needs to be viewed and written about within the proper context.
  • We feel attacked:  There are some who think we caused our children’s allergies and aren’t afraid to share it all over the internet.  I read this article and it describes very well how parents can be bullies too and requests empathy – it is well worth your time to read. But  the LEAP study does not say parents are to blame. It says feeding children peanuts early may help, but it will not help all of them. There is no way to go back and see which child would or would not develop an allergy. And guess what? Many of the children in the allergy community had life-threatening reactions before 4 months. Their faces swelled up and maybe they stopped breathing after being kissed by peanut-butter tainted lips. Many children had severe eczema, or reactions to breast milk after their mother ate peanuts.
  • We feel guilty: Although the LEAP study does not point blame, we blame ourselves. We cannot help it. Finding out now that feeding our children nuts at an earlier age could have even POSSIBLY prevented our child’s peanut allergy brings a disturbing and painful pang of mama-guilt. It feels awful, warranted or not. No one else needs to point a finger at us because we’ve had it pointing at ourselves since day one. We wondered if those nuts we ate (or didn’t eat) while pregnant made this happen. We wondered what we did wrong and have assumed we did something wrong.
  • We are frustrated: The LEAP findings contradict how I and many other parents fed our children at early ages. We followed recommendations of trusted allergists and pediatricians. Many of us were aware of food allergy dangers and consulted reputable sources like the American Academy of Pediatrics and American Academy of Asthma and Allergy. Avoidance was recommended in 2000. Recommendations were slightly modified in 2008 and furthermore in 2013, but that doesn’t mean all pediatricians and allergists were on board. Infant nutrition and care books were not up to date. We did research these things, but just didn’t know what we and the medical community did not yet know.
  • We have questions: While some answers have come to light, 100s more have popped up in their place. There is much left to learn, and we don’t fully understand what this all means yet. The LEAP study is great, but long term effects are yet unknown (awesome that they are continuing follow up in the LEAP-ON study as we speak).
  • We are grateful: In wake of the amazing developments of potential therapies like the Viaskin(R) peanut patch, the LEAP study findings, and more, science is making huge advancements in understanding how to help the allergy community. We are grateful. We are grateful for parents and children in the clinical trials and studies. We are grateful for those investing their time, careers, and funding. The knowledge is increasing, and the understanding being gained is invaluable. It is bound to change the allergy world forever. And soon. Thank you.
  • We are hopeful: Even if the LEAP study shows results that are too late for many of us to use the information, those having babies now will benefit. We hope allergy rates will go down. We don’t want ANY child to have a food allergy, even if our child does already. We hope the therapies will be effecive. We hope for science to find answers, causes, and cures. We anticipate these things and cling to hope for tools that will change our children’s lives.
  • We are forgiving: We are also frustrated that with all the new findings, there is still no concrete way to prevent infant peanut (and other) allergy. For many of us, even if we’d known and fed our child peanuts at 4 months, it may not have changed anything. We accept where we are now, where we’ve been, and instead of pointing fingers we look forward to future advancements. We forgive ourselves for our part as we forgive the medical community who is learning about allergies with new revelations, just as we are. And, we choose to forgive the community of ignorant people who feel the need to blame us.

 

It is important to note that not everyone within the allergy community has these feelings. But the care of our children and loved ones, and their safety is so important, that emotions are bound to run high. If it seems like some of us are conflicted, we are.

I am.

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