A Warning Bell will Ring in my Head!

"A Warning Bell will Ring in my Head!"

Trevor Leinenbach is doing an excellent job in managing his allergy to milk and can serve as a great example to teens everywhere. Thanks to the efforts of his mother Joy, they helped to start the support group, Food Allergies Coping Teaching and Supporting (FACTS) in Fairport, NY. Read here about the strategies Trevor uses to avoid anaphylaxis attacks, and the great support he receives from his college as well as friends and family.

Trevor Leinenbach discusses living with food allergies and asthma

Joy and Trevor Leinenbach; March, 2018
Joy and Trevor Leinenbach; March, 2018.

By Jon Terry
April 12th, 2018

Trevor Leinenbach has lived his entire life with life-threatening food allergies and asthma. He and his family, particularly his mother Joy, have spent many years educating themselves and others about the dangers of anaphylaxis. He recognizes the importance of being a role model for other young men facing many of the same issues he deals with day after day. Now attending Clarkson University in the northern most area of New York State, Trevor recently shared a few of his life experiences at an allergy support group. This support group, Food Allergies Coping Teaching and Supporting (FACTS), has bi-monthly meetings in Fairport, NY. Partly initiated by Joy, FACTS has helped many parents and kids at risk for anaphylaxis. Here are a few excerpts from my meeting notes. 

  • Trevor is a typical young man in so many ways.
  • Trevor loves attending Clarkson College.
  • Trevor loves playing on the club football team.
  • Trevor loves his fraternity brothers.
  • Trevor loves majoring in chemical engineering (well most of the time anyway!).

But Trevor does NOT love milk!

Milk is everywhere and is consumed by everyone; but NOT if you are allergic to milk itself. The media is full of light-hearted advertisements, such as those cute ones featuring milk mustaches, that are amusing way to sell milk products. But that might make society careless or indifferent to the health risks for a significant minority who consume foods daily only at their own grave risk. Today allergy to milk is no longer as unique as it used to be in America.

Researchers estimate that up to 15 million Americans have food allergies, including 5.9 million children under age 18. That’s 1 in 13 children, or roughly two in every classroom.

About 30 percent of children with food allergies are allergic to more than one food.

One in 12 people (about 25 million, or 8% of the U.S. population) had asthma in 2009, compared with 1 in 14 (about 20 million, or 7%) in 2001. Almost half (46.9%) of people with asthma had an attack in 2015.

How does Trevor deal successfully with the potentially dangerous situations he faces daily?? His mother Joy started FACTS to help protect him and act as an educator; Joy trained him step by step about just how to advocate for himself even at a young age.

"Now that I'm managing my allergies and asthma, a warning bell will ring in my head when I need to be extra alert." Trevor is comfortable advocating for himself; he reads labels carefully and always carries his Auvi-Q EAI device and other meds everywhere.

He got lots of help at Penfield Central Schools. Penfield Central gave Trevor and his family good support and accommodations on all field trips particularly their annual visit to Washington, DC. Despite advance prep for that trip, Trevor WAS apprehensive and a little frightened; so was his mom! The Penfield trip administrators had Trevor eat at special restaurants; he even had a special teacher assigned as chaperone to him. His family had lots of friends at church and on sports teams keeping an eye on Trevor when he was away from home.

Trevor has successfully avoided allergic reactions on many occasions but a few times he has experienced an anaphylaxis attack. During his high school swimming team season a protein shake was offered to Trevor. The bell in his head promptly went off, he immediately turned it down and it DID have whey protein in it! That was a close call for him. "You don't ever want to feel pressured to eat foods that might make you sick."

Another close call was at college at an event advertised as "vegan" that turned out to be anything but milk free. The butter on the serving table was NOT milk free; veggie burgers DID contain milk proteins. And Trevor's Mom Joy raised holy HELL with the college food service staff!

Trevor now has a designated dining hall with a special chef to prep all his meals; he calls in advance and gives the dining hall chef a heads-up. Today Joy and Trevor now believe that Clarkson is making a better effort to accommodate food allergy family members.

Trevor does belong to a social fraternity at Clarkson; he told the FACTS meeting attendees that his frat brothers at Delta Upsilon keep an eye out for him at all meals and parties; they fully support him through awareness, alertness and action. "Most kids are more aware of the dangers of anaphylaxis than the adults are," says Trevor.

Trevor and Joy suggest to other food allergy families that when searching for colleges to attend as a food allergic individual, take the following steps in order:

  1. Search for educational opportunities FIRST.
  2. Next, meet all staff and seek appropriate support.
  3. Finally, advocate for your own particular food allergy. 

Regarding restaurants and eating out away from the family circle, that is one of the biggest social challenges for food allergic individuals and their families.

Joy had to train Trevor on what to say and how to act in a somewhat hazardous environment.

At Clarkson there are a few restaurants available that are allergy aware and observe save serving procedures. Joy had to walk the streets there and do personal research all through the downtown area. She believes that "calling ahead to verify food allergy awareness is critical; just showing up surprises restaurant staff and can make them uncooperative!"

Following in the footsteps of his mother, Trevor is doing an admirable job of educating and advocating for those with life-threatening allergies. Through his life experiences, he learned the importance of awareness, alertness and action. With his guidance, Trevor’s campus community has become a safer environment for all concerned.

Article editing provided by Janet Goldman.
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