I am very honored to have been able to connect with Dr. Sarah M. Boudreau-Romano, otherwise known as The Allergist Mom. I first became aware of her impactful blog when I read her very popular post, “The Science of Anaphylaxis-An Allergic Storm“. Her posts are both informative and poignant mixing science with motherhood and adding doses of humor along the way. Because she is both an allergist and a mother to children with food allergies, I feel her voice is one of the most important we have out there championing the cause of food allergies. Thank you Dr. Sarah M. Boudreau-Romano!
For our readers that don’t know your background, would you mind briefly explaining?
I graduated summa cum laude with a BA in Biochemistry from Knox College and received my medical degree from Rush Medical College. After completing a pediatric residency at Children’s Memorial Hospital, Chicago, I became a board certified pediatrician and then pursued a fellowship in Allergy/Immunology at Children’s Memorial Hospital and Northwestern Memorial Hospital.
I have been blessed with four vibrant children, three of whom have life-threatening food allergies. My oldest son, although significantly affected by his siblings’ food allergies, has never had an allergic reaction. My twin boys both have multiple food allergies including cow’s milk, soy, egg, wheat, barley, green pea, beans, sesame, mustard, cranberry, grape, peanut and tree nuts. My daughter has a history of anaphylaxis to cow’s milk and FPIES to banana.
I am curious to know why you chose to share your family’s journey. What was your motivation?
My twin sons both had a severe allergic reaction to egg after eating a bite of the same cookie. This would be just the first of many serious allergic reactions my children would experience. After the list grew to include cow’s milk, egg, soy, wheat, oat, beans, nuts and more, I decided that after I finished my Allergy/Immunology fellowship, I would not return to work in the hospital right away. I didn’t feel like I could. The boys were having so many reactions that I was scared to leave them with anyone else at the time. I also had to cook. All of the quick, relatively easy and familiar meals were off the table, literally, so I had to create healthy and safe meals from scratch to feed a family of six three times a day.
Being home and not in the clinic was difficult for me. I spent many years trying to figure out how I could be home with the children but still be doing good for those patients that I would have been seeing in the office. After years of struggling with meals and reactions, school and play dates, birthday parties and baseball games, traveling or the lack thereof, it hit me. I could share my experiences with food allergy from both perspectives, the allergist and the mother of children with food allergies. I wondered if it would be or could be helpful to other families and hoped that this would be the way for me to do the most good from where I was, home. It has been such a blessing for me to be able to do this and hope that the articles that I write help people in one way or another.
I’m so happy that you decided to go public. I love the fact that you are both an allergist and a food allergy mom. I think your voice lends legitimacy to the concerns that we have as parents of food allergic children. Given your experience on the “patient side”, what do you think would be helpful for doctors to know about children with food allergies?
Children with food allergies are very self-aware individuals. They understand a great deal about their diagnosis and want to be a part of the decision – making. The more an appointment can involve the child, when they are old enough to understand, the better. It gives them more of a sense of control. Also using words that give hope and security as I mentioned in the post, The Food Challenge Challenge, is important. Food allergy is so much a part of the child’s existence that when we talk about the food allergies in a negative or hopeless manner, they see the conversation as a direct reflection of themselves. We need to always be aware of the way a child processes information and be sensitive to their age-appropriate needs.
What do you think would be helpful for doctors to know about the experience of parenting a child with a life-threatening medical condition?
Before I had children, I sometimes felt that parents of food allergic children were overly anxious at times. That was until I witnessed my son’s anaphylaxis to egg. One of my sons turned limp and blue and I thought that my child was dying in my arms. Oh, I get the anxiety now. There is something so terrifying about a food that is safe and benign to nearly everyone else being catastrophic for your child. It breaks the rules. It feels like a betrayal. The anxiety that parents feel is great because what is at risk is great, it’s perhaps the single most important thing in their life, their children. Having an allergist understand this and support these families emotionally would be such a gift to families of children with food allergy.
What do you think would be helpful for the general public to know about food allergies?
Whenever I meet someone who is skeptical about the relevance and reality of food allergy, I remind them that it is an autoimmune disease, a disorder of the immune system that the medical world actually knows a lot about. There is a real science behind it. It is not some mystical disease. It’s as real as diabetes or multiple sclerosis. The overuse and misuse of the term “allergy” has mislead the public and now we find ourselves in this field struggling to properly educate people.
I would want the public to know that true food allergies are serious and unpredictable. That reactions can happen with even a minute exposure to the allergenic food and that severe allergic reactions should be treated with injectable epinephrine without hesitation.
As a physician, what do you wish every food allergy parent would know?
Maybe there are two things. The first being that just because your child’s first reaction was a mild reaction, that doesn’t not guarantee that subsequent reactions will match in severity. The most difficult part of food allergies is the unpredictability of the reactions. I would encourage parents not to say that there child has a “mild” allergy. They may have had a history of a mild reaction but that doesn’t mean much for predicting future reactions. There is no such thing as a mild allergy. It’s all or nothing. You are either allergic to it or you aren’t. There have been too many families who labeled their child’s reaction as mild and then who chose not to carry their injectable epinephrine who regret that decision immensely.
That brings me to my second most important point and that is the importance of carrying injectable epinephrine wherever your child goes, no exceptions. This is a potentially life-saving decision.
Lastly, what questions do you think every food allergy parent should ask his/her child’s allergist?
I find the most difficult part of being a food allergy parent is feeling like I am driving the bus, so to speak. Food allergy families need to get a short term and long term plan from their allergists, and they shouldn’t be afraid to ask for this. Talking about what foods they should start next and what foods they should start after that and when they should call for food challenges, for example. Asking their allergist about a referral to a pediatric nutritionist, especially if they have children with multiple food allergies, can also be important. Seeing a nutritionist is very helpful when trying to make sure that your child is getting the necessary daily requirements.
Most importantly, food allergy families should not leave the allergist’s office until they are 110% comfortable with when and how to use the injectable epinephrine. They should not feel embarrassed to ask to have this information repeated until they feel certain and confident about it.