Megan's Story

"It has been life-changing to not have to worry about having a severe allergic reaction every time I am around food.”

Megan was just 11 years-old when she went through her double-blind food challenges at the Sean N. Parker Center for Allergy and Asthma Research at Stanford University to see if she could qualify for a food allergy trial.

The double-blind-placebo-controlled food challenges (DBPCFCs), as they are officially called, are one of the first steps, and often, biggest hurdle that a family faces when going through the food allergy trial screening process at the Center. Considered the gold standard of food allergy tests, DBPCFCs are used to verify food allergies because blood and skin tests can often yield false positives. DBPCFCs are blinded so that neither the clinician nor the patient knows which food is being tested on each individual day. A full day is scheduled for each suspected allergen and one additional day for the placebo.  

Like many patients, Megan was initially scared during her double blinds because she didn’t know what she was eating. “Anxiety and fear surrounding food allergies is natural and completely understandable,” says Center Physician Assistant Tina Dominguez. “This is why we do the DBPCFC versus doing an open food challenge where everyone knows what allergen is being tested. After having been told all of your life that a particular allergen could potentially kill you, openly challenging the allergen can provoke anxiety making it difficult for the clinician to determine if the reaction(s) is an actual reaction to the food, or if it is related to the fear and anxiety from doing the challenge.”

During her double blinds, Megan reacted to milk, egg, soy, and just 0.1 mg of peanut (a full peanut is 240 mg). Her reactions to each food were severe enough to qualify her for the world’s first multiple food allergy oral immunotherapy trial with Xolair—a study aimed at desensitizing food allergic patients to multiple food allergens simultaneously.

Though the road ahead was initially bumpy, and Megan had several reactions along the way, the staff at the Sean N. Parker Center for Allergy and Asthma Research at Stanford University eased the process immensely. “The nurses and doctors were always there for me and I knew I was in good hands, especially during a reaction.  They always made an effort to provide a fun and safe environment for me at the Center.”

Now 14, Megan is desensitized to all four of her food allergens and no longer needs to worry about cross-contamination. Even so, she still checks the ingredients in the labels. “I’m wired to be that way,” she explains. Today, she can eat donuts when her father brings them home, and enjoy a new favorite food that she always missed out on: chocolate. She also can go to baseball games without worrying about peanut dust. “Kari’s research has changed my life and my family’s life. We are way more comfortable around food that I previously wouldn’t even think of touching. It has been life-changing to not have to worry about having a severe allergic reaction every time I am around food.”

Prior to the trial, the Bitlers had been able to take the preventative steps to avoiding reactions. But Megan’s mother, Julie, would often worry about her daughter’s future, knowing she would want to do more as she got older. “The amazing change in our lives is being freed from the risks of cross-contamination. She can now eat food that anyone prepares. She can go out to restaurants, try things with other people. There is no longer danger of milk spilling on her or touching a doorknob with food residue. Knowing that she is safe in the world has made all the difference. So much of what we can do as a family now wouldn’t have been possible without Dr. Nadeau.”

Megan is just one of the examples of how life-changing the trials at the Sean N. Parker Center for Allergy and Asthma Research at Stanford University can be. I asked the Bitlers to sum up in one word their experience with the Center. Julie’s response was “liberating.” Megan’s was “extraordinary.” 

 

By Matthew Friend

Matthew Friend is a high school senior from Chicago. He has written extensively about his experience as a teen with food allergies and as an oral immunotherapy clinical trial graduate in Huffington Post and Stanford School of Medicine's SCOPE blog. Read more about Matthew here.

Edited by Center writer Leslie Adato.