Food Allergies + CFAAR
In the thick of lockdown last year, our family experienced the worst anaphylactic food allergy event of our lives. And while it’s hard to relive the memory, as with most of the stuff I share, it’s with the hope that it helps even one person. At the end of the day, this makes vulnerability worthwhile.
My niece and nephew have food allergies; Sam’s are to dairy and nuts, Sara’s are the same plus gluten.We first discovered Sam’s allergies at 6 months old when we gave him goat milk (he was a colicky baby and sis read that goat milk is easier to digest than cow’s milk). Within minutes the poor guy’s baby soft, cream colored skin was covered head to toe in patchy red hives and it wasn’t a sight you can easily forget. When sis was pregnant with Sara, we were mulling the possibilities of whether or not she would even have food allergies and how do you handle one kid having them while the other doesn’t! Lol to those wishful thoughts. At Sara’s first allergist appointment, her entire back was covered with hives and sis had to sit down when she found out that not only did she have the same allergies as Sam, but she also had a gluten allergy. Just when you get the hang of one set of allergies, to be told gluten is a no-no was difficult to digest. They have actually outgrown several allergies like eggs, seafood, sesame, etc. since birth and this has been a boon in our allergy journey.
Having a child with a food allergy can translate to living with a low-key level of anxiety 24/7. I wonder sometimes if it’s the Universe testing our anxiety resilience because it sure feels that way at times! You go through different phases as they grow older and more independent. We are gearing up for Samuel heading to college in a little over a year (eep) and trusting he is well equipped for the independence he will experience as an adult on his own who knows his first priority at all times is his life - via food safety.
Anyway, back to the topic I’m trying to evade. It was a Saturday morning and Sara was eating her waffles. She ate a quarter of one and started to feel ill. My sister ran down and made the horrifying discovery that we had purchased regular, not gluten free, waffles. For someone with such a severe allergy, she had consumed a very large amount of gluten. In those days of quarantine, we were walking more often to stay sane, including to Jewel which isn’t our routine grocery store but was closer to walk to. I was with sis when we grabbed the waffles. It was in the gluten free section. She didn’t think to check the label because of the dedicated section it was in and I had completely forgotten Van’s made gluten products. COVID brains at their finest. [Side note: But also, glancing at the packaging, why are the labels so alarmingly similar?!?!]
Sis immediately drove Sara to the ER and because of COVID restrictions, I could not go. I was a pile of tears and anguish listening to White Sun on repeat to calm down, trying to be as optimistic as humanly possibly while pleading with the Universe to look after my girl. And thank goodness, she made a full recovery. It’s unfortunately not our first allergy incident or ER visit with the kids. In kindergarten, Sam was trying to help his classmate clean up after he had spilt milk. Kind, right? Except Sam rubbed his eyes and had a reaction. As a toddler, he was kissed on the cheek by someone at a party who ate peanuts and off we rushed to the ER. Sara was once hospitalized for asthma and the hospital mistakenly gave her food with gluten…I was holding her and could feel her body go lifeless when I thought to question the ingredients in the dinner she had been served.
There are ups and downs and we hope + pray for the best, always trusting the Universe has our back. The kids’ allergist, Dr. Aaron Donnell of the Chicago Family Asthma & Allergy group is a godsend and has helped us every step of the way since living in the city. We also refuse to let anxiety win and want these kids to live as full a life as they want. An allergy incident is trauma and it takes a different toll on each individual. This time, the guilt of our mistaken purchase was unbearable. Yet we recognized we are human and therefore fallible. It renewed our level of caution with food, which can be scarily lulled at times, even though there’s not much of a permissible margin of error.
With my heightened sense of allergy awareness, years of experience as an involved allergy aunt, and desire to contribute, I joined the newly launched Community Advisory Board (CAB) for the Center for Food Allergy & Asthma Research (CFAAR). CFAAR is a joint center between Northwestern’s Institute for Public Health and Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago. It’s mission is “to find answers and shape policies surrounding food allergy, asthma, and other allergic conditions through our epidemiological, clinical, and community-facing research.” At its helm is Dr. Ruchi Gupta who is a pediatrician, researcher, professor, and allergy mom who also has a Masters in Public Health. She is nationally recognized for her groundbreaking work and her impact in the asthma and allergy world is profound and only ascending! She also has an uber dedicated team (check our their project directory/publications). The CAB members have a wealth of experience and a drive to make a difference in the lives of those with asthma and allergies. I am learning, a lot!
Our events team has been hard at work and in the coming months, we will be sharing our webinar events on topics such as navigating preschool with food allergies, handling the aftermath of an anaphylactic reaction, and disparities in food allergies. We are striving to choose relevant/helpful topics and also offer a 360 degree perspective (for example, you will hear from a parent, early childhood educator, and nursery school director for the preschool session.) Follow @cfaarnu for more info and I will also post on social media when our events go live.
Being part of this group made me quickly realize how much support is out there and how much worse some people with allergies have it (hearing about one person having 65 food allergies was shocking.) Our family has been quite insular in our approach to food allergies and while it has worked for us, it also feels good to be plugged into a knowledgable community. Food allergies can be challenging and yet there are silver linings (the kids love fruits and vegetables, yay) and it has taught us innumerable lessons in perspective, control, and trust.
If I can be of any help in your food allergy journey, do not hesitate to reach out.
If you are willing, share your experience on these topics below…I’d love to hear from you!
