Ever since I was a child, I possessed a deep desire to know how things work. Eventually, this innate curiosity led me down a career path in science, where I could push and hopefully expand the boundaries of human knowledge. After nearly seven years of post-secondary education when I got my doctorate in neuroscience, it was a dream come true. In addition, I always wanted to be a mother; when my first son was born five years ago, and again when the second was born a year ago, these were dreams come true. But then the motherhood dream ran headlong into the food allergy epidemic. Like many mothers faced with this predicament, I have thrown myself into investigating the subject, and in doing so, I find myself stretched between my two dreams. On the one hand there are unconditional love and all the other emotions that accompany the discovery of chronic illness, not to mention the practical management concerns. On the other hand, there are the technical and analytical skills that go with a life of laboratory science – aka bench work.
Day by day, I have to mediate between these two sides—the steadfast scientist, intrepid investigator and the terrified Mom. I figured that if I could get the basics of how the nervous system works, I could understand the immune system, right? But that was hubris. While study initially gave me a sense of control, it turns out, my brain can only handle so many T-cells, and B-cells, and IgE antibodies, and mast cells, and heaven forbid all the cursed cytokines with interleukin followed by some random number at a time. It is during these moments, when I am too mentally tired, that this food allergy life feels so lonely. In those moments, I turn to various support groups and blogs on the internet to mingle with other food allergy parents out there who “get it” – those who understand the fear and helplessness, who never feel quite in control of their children’s allergies. What does one side of me have to say to the other?
MESSAGE FROM A SCIENTIST TO FOOD ALLERGY PARENTS
Sometimes the scientist in me finds that the blessing of an understanding community can also be a curse. It only takes a few scary stories about a child’s random hives from playing on the playground last week, or suddenly throwing up after eating a safe food to take the warm glow out of that communal setting! Like all allergy parents, I live with this constant fear of a reaction, waiting for “the big one.” At the same time, however, my science background trained me to be skeptical of everything, and this skepticism carries over to my own feelings and emotions. I constantly question myself and wonder if the fear and my reactions to it are reasonable. There seems to be no absolute consensus on managing food allergies aside from avoiding allergens and carrying epinephrine and antihistamines at all times. Where does your child sit during lunch at school? Should the allergen be allowed in the household for the non-allergic? Should you avoid foods from the same botanical family (e.g. legumes)? These are open for debate, but you might never know it if you stick to one group or another. Each has its own orientation. The correct approach probably depends on the individual situation – the family, the given allergies and confounding conditions like asthma, the child’s developmental age/understanding of their allergies, and the level of understanding by adults. Using online forums is great for generating ideas for how to handle a particular situation, but they are no substitute for our family allergist. I hope you feel that way about yours.
Then there’s the theme of trying to pin down what could have caused a child’s allergies. I do it, too. After all, I call my own blog Food Allergy Sleuth. We all feel if we understand the cause, we can stop the allergy epidemic in its tracks and better yet, maybe we can reverse it. Intuitively, we know that the number of allergic children has risen way too rapidly to be explained entirely by evolution. We know there is something in our environment, but what? So many parents take the latest scientific findings shared in some short summary piece, whether it is the New York Times or Wall Street Journal or Fox local news, and filter it through the lens of their child’s allergies. But as parents we shouldn’t take these reports too seriously. It helps to keep in mind that researchers usually set out to investigate a single piece of the puzzle. Do not immediately disregard the science because your individual allergy experience is not in line with the packaged conclusions. I also urge caution in what I like to call the “favorite hypothesis syndrome.” It is healthy and encouraging to think about what the underlying cause(s) of the allergy epidemic are. Be aware, though, that it is easy to latch onto your one favorite hypothesis – e.g. it must be genetically modified foods or vaccines – and become blinded by it. As humans, we are more likely to see the science news stories that agree with our hypotheses and less likely to pay attention to the science that may not support it. This is bias, and ultimately it may lead us to make health decisions that are not based on complete scientific findings.
This leads me to a final point – greet the latest greatest allergy research with a healthy dose of cautious optimism. Nothing brings greater joy to a scientist than to see the latest research findings being shared like wild-fire across a large swath of genuinely interested non-scientists. Paradoxically, that is also the scientist’s greatest terror. How can it be both? It turns out that how scientific findings get reported, even from reputable news outlets like the New York Times, tends to over-state the conclusions. Article titles like “Insert hypothesis du jour here may cause food allergies” or “Radical new treatment may cure food allergies” intentionally grab the reader’s attention. However, if you look at the actual title of the journal publication, it usually states the research findings much more subtly, with very good reason. Bold conclusive statements in science like “X may cause food allergies” tend to be reserved for the culmination of many, MANY research studies that all support the same conclusion, not just one study. Over-sold news stories about a single study leads to public skepticism of science, especially when directly contradictory stories appear just months apart. How many times have we heard eggs are good for you? Oh wait, just kidding, eggs are bad! Conventional wisdom shifts very rapidly.
The scientific process works. It is just painfully slow because findings need to be repeated multiple times under multiple different conditions to draw trustworthy conclusions. I urge parents to discuss the latest research findings with their allergist at their next appointment. Chances are, they have seen the research, and can provide a more reasonable summary of the whole complicated, moving picture. It will not only tickle them to talk about these research findings with you, but being forced to answer your questions will make them better doctors. I also encourage you to seek out a summary of the latest research findings by experts from trustworthy sites like FARE, and the Asthma and Allergy Foundation of America/Kids with Food Allergies Foundation (as well as the one you are reading right now). And above all, I urge caution in changing any habits based on reports from the mainstream media. Always talk with your allergist’s office first. Allergists are not infallible anymore than the rest of us, but it is their job to put science to work on behalf of their patients.
This is part one of a two-part post.
Jessica Martin earned a Ph.D. in Neuroscience from Oregon Health and Science University in 2011. She lives in the Portland, Oregon area with her husband Jason and their sons where she teaches undergraduate biology and anatomy and physiology at Portland Community College. Although not currently engaged in cutting-edge laboratory science, she continues to actively research current findings in allergy and immunology, where she writes about some of those findings on her blog, The Food Allergy Sleuth. She aspires to eventually return to the trenches of doing laboratory science in allergy and immunology, but for now, her life is happily filled to the brim with being a Mom, an educator, a writer, and as most food allergy sufferers and parents already know, part-time cook.
Photo courtesy of Dustin Johnsen, Ph.D.
Such an insightful and interesting editorial. Glad there is more to come.
In reference to “new” treatments, I would just like to point out that oral-immunotherapy is not a recent discovery. Dr. Burks’ clinical trials proving OIT to be “safe and effective” are probably over a decade old now? And other private allergists have been offering the treatment since I was in high school–which is shockingly two decades ago. Thousands of children have been desensitized, my son included.
The problem is that we do not have enough private allergist, or even hospitals for that matter, to treat the millions of children suddenly thrust into this food allergy epidemic. And your local allergist cannot possibly give you insight to this truly life-saving treatment because they haven’t taken the time to find our for themselves by contacting the doctors who specialize in OIT. They might speak with some of the researchers but they are motivated by a multitude of reasons to keep OIT in a clinical setting.
For one, who will join their studies if they can get treatment that is tapered to their individual child in their own backyard, so to speak? Secondly, they are working on products that may make treatment “easier” for the masses, such as a patch, herb or hypo-allergenic peanut protein. Also, just their need to know all the ins and outs before releasing it to the public.
As I’ve said before, now that OIT is deemed “safe and effective,” our child’s right to live and not become a statistic or isolated in fear of everyday things and food, trumps the researchers desire to know. Our truth does not fit into their science.