It’s been a rough and tumble past few weeks of national scrutiny on motherhood. Most people think I spend my days diagnosing ear infections, pneumonia and rashes. The reality falls closer to the “art” side of medicine, and usually has nothing to do with what I learned in medical school. I spend my working days listening to literally thousands of mothers a year on their parenting style and concerns. Watching national figures voice opinions on working vs. stay-at-home moms, Attachment Parenting vs Babywise, breast vs bottle for the express purpose to distract, divide and demonize fellow Americans has been painful to watch.
This is not to say I don’t voice opinions on those topics in the office, I certainly do, it’s part of what families hire me to do. The difference is, I take some medical data combined with the range of normal behavior I’ve gleaned from years of listening and apply it to a particular mother’s concern for the express purpose of strengthening her abilities as a parent. I’ve had mothers beam with joy when they are fully breastfeeding after an office pep-talk, I’ve had exhausted mothers cry with relief when I’ve told her it’s ok to stop breastfeeding, I’ve given swaddling and soothing lessons to frustrated parents of fussy newborns and ‘cry it out’ talks to overtired bleary-eyed parents of older children. I don’t have a political agenda or a parenting concept I’m financially invested in promoting, I just want to see parents succeed.
Last week, I was invited to wade into an area of “parental conflict” for Nightline: the question of food bans in school. I’m interested to see how the video editing goes. I suspect I was invited into the discussion because I’m an allergy mom who does not support food bans in school, which is a juicy narrative to show an additional conflict between allergy moms as well. The narrative in real life isn’t nearly as exciting: I’ll always fall on the side of maternal desire to protect her child. Period. I get how powerful that is. I know what it’s like to stare at the ceiling at 2am the morning before kindergarten starts with visions of peanut bullies ready to tease and smear allergens on a child. I know what it’s like to attend Thanksgiving dinner with a toddler putting everything in their mouth. I know what it’s like to worry that every tummy ache might be the start of anaphylaxis.
The question is how to keep the overwhelming anxiety monsters in check, keep kids safe, allow them to live full lives and maintain positive connections within our communities. Thankfully, the “science” portion of allergy medicine is getting up to speed to help us out. We can achieve all these goals by demanding proper diagnosis, utilizing common sense and data-driven avoidance measures to reduce reactions, and educating our communities on how to recognize and treat anaphylaxis.
On the topic of diagnosis, there are far too many children wrongly diagnosed with food allergy resulting in significant emotional and financial burdens. A large number of children are blood or skin-test positive to foods they’ve never eaten and may not be allergic to, but are told to avoid these foods and carry EpiPens everywhere. It’s so easy to find a doctor willing to run a RAST test or do skin-prick testing, it’s nearly impossible to find a doctor willing to “undiagnose” a positive test with oral challenge. My kids are examples of this. They’ve both had reactions to milk, but in the process of testing were also found to be egg and peanut allergic. We’ve never found anyone willing to clarify if those positives are real, so we just continue to avoid them.
There are also many children who have eaten foods without reaction, but subsequent testing shows positives. These children are, by definition, not allergic to these foods but are sometimes advised to avoid and carry Epi. These cases muddy the water for children that are truly allergic. When one “milk allergic” student can eat cheese or baked dairy, it is very confusing to explain how another truly milk allergic student could anaphylax after a small taste of dairy. The emotional and financial strain on families, to maintain vigilance for an allergy that may not exist, is unacceptable and the allergy community needs to step up and aggressively “un-diagnose” with the same enthusiasm that they initially diagnose allergy.
Reducing reactions is at the heart of the “food ban” debate. Initially, when faced with peanut allergic children, many schools simply banned peanuts. As a medical community, this approach seemed logical until research into whether this actually reduced reactions could be completed. We now have research that shows food bans are not necessary or effective. They’ve been proven to decrease the amount of peanuts in lunches, but this has not translated to decreased reactions or fatalities. In addition, these bans only address peanut allergy. Per capita, there are more allergic events to dairy than peanut, yet no one is trying to ban dairy from schools. Taking a step back from blanket food bans, to more developmentally targeted measures of peanut-free classrooms or lunch tables at young ages where topical exposure could become ingestion, and putting focus on preventing ingestion of allergic foods by food sharing or eating unsafe foods is going to be difficult for some parents. Education on medical rationale against food bans will be our challenge.
Recognizing and treating anaphylaxis is the key to stopping death by anaphylaxis. The cases of anaphylactic fatalities are the same, tragic and preventable events. Over and over, anaphylaxis isn’t recognized and epinephrine is delayed. As a medical community, we’ve done a great job educating the public on signs and symptoms of heart attack and stroke. We have not done the same for anaphylaxis. In addition, fear of epinephrine and barriers to ready access hinder treatment once anaphylaxis is recognized. We have defibrillators in schools for cardiac events, but not access to epinephrine for allergic events. Given the fact that 25% of anaphylactic events are in people with undiagnosed allergy, without an EpiPen prescription yet, increasing access in schools and “Good Samaritan” use of any available EpiPen is something we should work towards.
There are allergy moms out there that make headlines, which is why Nightline has interest in food allergy. You’ve read the stories: peanut sniffing dogs, washing out children’s mouths, or wiping down classrooms daily with Chlorox. Some parents are nearly paralyzed with fear while others have become so fully invested in food allergy as their identity. I feel for these families and their children. For some, education and leadership by doctors will help. For others, there are deeper issues going on. There is a growing discussion among medical providers on how to provide psychiatric interventions for parents that are cracking under the stress. It’s a hard conversation to have. But it’s also cruel to sit by watching these families spinning out of control, ignoring medical advice, isolated from community, fighting battles they don’t need to fight.
A far greater number of allergy moms are on the same page as I am, we just don’t make headlines. We have nut-free classrooms and lunch tables at young ages, but less so as our kids grow older and are better at managing what enters their mouths. We love classrooms parties! We provide our kids with their own snacks for birthdays and help cater the holiday parties with safe treats. We don’t let food allergy define our kids, and can’t imagine food allergy being a disability. We discuss the moments of exclusion with our kids, but turn the focus on how to include others who may have challenges: the kids in school with cerebral palsy, developmental delay, celiac disease, diabetes. In short, we stay educated, keep living and moving forward with compassion. Hopefully, Speedbump Kitchen accomplishes what I aim to provide the families I doctor: sound medical data with practical everyday advice to strengthen your abilities as an allergy mom. Happy Mother’s Day. May The Force Be With You.0