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My Daughter Has a Life-Threatening Allergy

Ruchi Gupta
February 15, 2019

By Ruchi Gupta, MD MPH, as told to Jennifer Clopton

I became passionate about studying food allergies very early in my career as a pediatrician and researcher. After seeing parents of children with life-threatening food allergies struggle to keep their kids safe, and realizing that there was very little scientific data to help them, I decided I wanted to help change that.

And then, about three years into my research, my 1-year-old daughter had an allergic reaction of her own. Up until that time, nobody in my family had ever had a reaction to a food. But I knew instantly what was happening when my then 5-year old son and 1-year-old daughter began yelling for help while playing in the next room.

I rushed in to see what was going on and found Riya covered in severe hives that had started on her face and were quickly spreading down her entire body. Given my medical training, I immediately recognized what was happening and realized she was likely reacting to peanut butter my son had just eaten (traces of it were still smudged on his little hands). We didn’t have epinephrine in the house, so I went running for Benadryl instead.

But even as I jumped into action as a doctor, the mother in me was having an entirely different set of reactions. My heart was racing. My mind was frantic. I felt anxious and agitated waiting to see if the medication would calm her reaction and wondering when and if I needed to call an ambulance. In the moment, I remember feeling such fear - wanting to help my child and keep her safe … and wondering if I actually could.

Hours later, when the reaction had stopped, I was overwhelmed with the irony of it all. I realized on that day that it didn’t matter how much I had studied food allergies because a new phase of my education was just beginning. My research into food allergies had in no way prepared me for being the parent of a child who had one. So I joined a support group for mothers of children with food allergies because I knew our family’s life was about to change and that I was going to need help navigating that.

The thing about food allergies is – they impact every aspect of a child’s life and therefore their family’s. When you realize your child might have a severe reaction if they come into contact with an allergen, your life shifts and becomes focused on managing that risk and keeping your child safe.

So like every other family touched by allergies, we suddenly had lots of practical questions to answer. Should we no longer keep peanuts and peanut products in the home? They were my son’s favorite food. How were we going to manage that? What precautions were we going to take at home? In restaurants? At other people’s homes? With caregivers?

Answering these questions becomes complicated because there’s a severity spectrum with food allergies. A child can have a mild reaction to a food one day and a severe and life threatening reaction to the same food another day. Some kids outgrow their allergies. Others don’t. Some only react when they eat the problem food. Others have to worry about cross contact or whether that product is manufactured in a facility with other food.

Every child is different, so there’s no one-size-fits-all approach for food allergy families. You have to figure these things out for yourself and then you have to educate others. And just when you get comfortable with the challenges you are facing, new ones pop up as children grow.

A deeply challenging one for me came when Riya entered school and I realized I had to trust someone else to keep her safe. It was not easy for me. In fact, it was terrifying.

The doctor in me made sure she had two epinephrine autoinjectors with her at all times, trained her teachers to administer the medication, and created an emergency plan if they had to call 9-1-1. Even so, for a long time the mother in me couldn’t just drop her off at school and leave. Day after day, I sat in her classroom looking for risks and problem solving solutions.

When I did get comfortable leaving her at school, I was afraid to be too far from her. I had put her in a preschool within 10 minutes of my work so I could get there quickly if need be, and I held onto my phone all day in case they called with an emergency. I also didn’t want to travel for work and risk her having a reaction without me there. So for a long time, I took her on work trips with me – bringing along my husband or parents to watch her while I did presentations on my food allergy research.

There is so much fear for parents of children with food allergies, and I felt it intensely. It starts because you know the serious implications of their allergies, and it builds every time your child has a reaction or even enters a new situation where that’s a possibility.

Riya has had several more reactions through the years that have resulted not only in hives, but also violent bouts of vomiting that have left her weak and lethargic. When symptoms occur in two organ systems like that, it’s considered anaphylactic and life-threatening. It is hard to verbalize how frightening that is.

Riya is now 12 years old and our challenges have continued to evolve as she heads towards her teenage years. We’re now working on finding the balance between giving her more independence and still helping to keep her safe. In the process, we’ve had to grapple with hard questions like – how do you educate children about the seriousness of the risk without making them petrified of every bite or every meal? I deeply understand how hard that is to figure out. Answers don’t come easily.

In our own family, we role play a lot of different scenarios she may encounter - whether it’s bullies or waiters asking tough questions or figuring out if it’s safe to eat a dinner that a friend or family member has made. “I just ate, thank you,” has become our go-to comment in social situations that are hard to navigate.

We’ve learned Italian and Mexican restaurants are safest for her. We’re teaching her to read labels and always carry safe snacks. We’re educating her friends so they know what her reactions look like and how to help her if one happens. And most importantly, she knows how to tell if she is having a reaction and she knows how to administer her epinephrine to herself if needed. 

As terrifying and challenging as the journey as a food allergy parent has been at times, I also see how it is shaping my daughter into a resilient, courageous, strong teen who is learning to self-advocate in ways that I know will serve her throughout life.

I also know it’s made me a better doctor. Getting this first hand experience has shaped my research and work and given me so much empathy and true understanding for my patients and their day-to-day lives.

But more than a decade into this, the mom in me still feels like any other food allergy parent. My medical training hasn’t changed that. I’m still figuring things out at each turn, leaning on my friends, colleagues and support group in challenging moments, and still worrying when a speck of redness pops up on my daughter’s cheek, she takes the first bite of something new, or heads off without me to hang out with friends. 

The difference is, I get to take these fears and concerns and challenges into my labs and try to find answers – for my daughter and all the other brave children like her. I’ve been inspired to pick research projects that I hope really can improve the daily life of those with food allergies. My passion, purpose, and profession have aligned in a pretty incredible way and because of that, I do feel like the luckiest person in the world.

 

Ruchi Gupta is a pediatrician at Ann & Robert H. Lurie Children’s Hospital of Chicago, Director of their Science and Outcomes of Allergy and Asthma Research Program, and a professor at Northwestern University Feinberg School of Medicine. She has authored groundbreaking research on food allergy prevalence in children and adults, does a lot of outreach work with children, young adults and schools in the allergy community, and is the author of the book - The Food Allergy Experience. You can follow her on Twitter @ruchisgupta and @SOAAR4Research and teamsoaar on Instagram.

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