Our Peanut Oral Immunotherapy (OIT) Story

By Melanie Lundheim

My kids, Soren and Tessa, started peanut oral immunotherapy (OIT) (a.k.a. “peanut desensitization”) on July 9, 2013. It was a life-enhancing experience. Here’s our long story short: 

Siblings Born with Severe Peanut Allergies

Soren and Tessa were born with severe peanut allergies.

  • Their blood levels to peanut measured more than 100.
  • Since labs stop measuring after 100, their blood levels to peanut could have measured in the hundreds or thousands.
  • For perspective, a non-allergic blood level is 0.35 or lower.

 

 Peanut Allergy Challenges

It was a challenge to prevent Soren and Tessa from being exposed to invisible traces of peanut, which could (and did) trigger life-threatening anaphylaxis in them. 

  • Before entrusting our kids in the care of others, such as family members, teachers, coaches, friends’ parents, bus drivers, chaperones, school lunch and recess staff members, etc., we had to ask them to clean surfaces, watch for symptoms of anaphylaxis in our children and learn how to administer epinephrine.
  • Sometimes adults who didn’t understand the severity of our kids’ allergies exposed them to peanut.
  • Other times, hosts would exclude us from gatherings to avoid the hassle and worry of accommodating our kids’ special needs. We understood that they meant well, but still felt isolated at times. 
  • Since it’s impossible to live in a bubble, away from all traces of peanut, our kids had multiple anaphylactic reactions to peanut over the years. Their reactions were scary, but the epinephrine they promptly received after each anaphylactic reaction was effective.

 

Peanut Allergy Treatment Quest

Over the years, I actively sought out ways to get our kids desensitized to peanut. The only options available at the time were clinical peanut-desensitization trials, which our kids didn’t quality for given their histories of asthma and anaphylaxis to peanut.

  • In 2012, I learned that a few doctors (in states far away from ours) were finally providing patients with peanut OIT outside of clinical-trial settings.
  • Desperate to get Soren and Tessa desensitized to peanut, I planned to move with them to Dallas, Texas for six months to be treated by Richard L. Wasserman, M.D. of Allergy Partners of North Texas.
  • In the process, I learned that Whitney Molis, M.D. of Pediatric and Adult Allergy in Des Moines, Iowa (just four-and-a-half hours away from our home in Minnesota) also performed peanut OIT, but didn’t advertise this service given the high demand among her patients for treatment. We saw her as soon as possible, and she agreed to treat Soren and Tessa in 2013, when they were 12 and 10 years old.

 

Our Peanut OIT Experience

Over the course of six months (from July 2013 to January 2014), we traveled weekly between our home in Minnetonka, Minnesota and Dr. Molis’ office in Des Moines, Iowa, where Soren and Tessa gradually increased their peanut doses from 1/200,000th of a peanut on day one to 21 peanuts on graduation day.

  • On January 3, 2014, Soren and Tessa were Dr. Molis’ 100th and 101st patients to graduate from peanut OIT.
  • From then to now, they must continue to take daily peanut doses to maintain desensitization to peanut.
  • After each peanut dose, they must also undergo at least two hours of “downtime,” because even lightly strenuous activity (such as climbing stairs, doing yard work, taking showers, jogging, etc.) after a peanut dose could trigger anaphylaxis in them.
  • Because of this, we believe that peanut OIT is suited for only the most vigilant patients and their caregivers who will strictly adhere to patients’ daily dose and downtime regimens.
  • Today, Soren’s and Tessa’s blood levels to peanut have dramatically declined from more than a hundred to the teens. They’ll continue taking their daily peanut doses to maintain desensitization until and after their blood levels to peanut approach non-allergic levels of 0.035 or lower.

 

Peanut OIT Has Dramatically Enhanced Our Quality of Life

Soren and Tessa must still carry their life-saving medications (including epinephrine, antihistamines and asthma inhalers) with them at all times. They must also consume their peanut doses and adhere to their post-dose downtime every day. Nevertheless, peanut OIT has dramatically increased our quality of life.

  • After peanut OIT, Soren and Tessa no longer have to worry about getting life-threatening anaphylaxis after being exposed to invisible traces of peanut. They can also eat foods made in facilities or on equipment that processes peanuts, such as Blizzard® Treats from Dairy Queen. This has been a tremendous relief for our entire family, as well as our network of friends, teachers and others.
  • We highly recommend peanut OIT. Find a reputable and vetted peanut OIT doctor near you.

Tree Nut and Peanut Allergy Awareness Resources

Here are some resources I’ve put together to help people affected by peanut and tree nut allergies:

  • Kids’ Allergies: Peanuts and Tree Nuts YouTube video
  • Kids’ Allergies: Peanuts and Tree Nuts downloadable ebook
  • Kids’ Allergies: Peanuts and Tree Nuts — Create a Safer Learning Environment video
  • Kids’ Allergies: Peanuts and Tree Nuts — Create a Safer Learning Environment downloadable presentation
  • Peanuts and tree nuts inside and outside their shells poster
  • Must-see documentary from Discovery Channel: An Emerging Epidemic: Food Allergies in America
  • If you or a loved one is about to undergo peanut OIT, I highly recommend joining Liseetsa Mann’s Facebook support group: Private Practice OIT.
  • Liseetsa Mann also has an excellent website to help you learn more about OIT and find a vetted OIT doctor: https://www.oit101.org/

List of Snacks That Don’t Contain Peanuts or Tree Nuts

Oftentimes, people ask me for a list of snacks that don’t contain peanuts or tree nuts. Here’s what I tell them:

Snacks’ “safe status” can change. Rather than rely on an outdated list, please read food-package ingredient labels carefully and choose shared snacks that don’t contain peanuts or tree nuts, and that aren’t manufactured on equipment or in a facility that processes peanuts or tree nuts.

In addition, if the food is prepared in the home, be sure it doesn’t come into contact with peanut or tree nut residue on surfaces, utensils, cutting boards, sticks of butter, wash cloths or jelly in jars. 

Finally, it’s a good idea to keep the packages of the foods you serve, in case the allergic individual and/or their parent would like to check them, and ask them ahead of time if your selection is OK.

Thanks for doing your part to keep children safe who have tree nut /peanut allergies that can trigger life-threatening anaphylaxis.