SALT LAKE CITY — People living with a severe allergy know it can be paralyzing and control everyday life. One Utah family credits their recently found freedom to a new oral therapy.
“There's your timer!" Megan Jones said to her 6-year-old daughter, Jules Jones.
She sets the clock in her kitchen for an hour every day.
"Swallow them down, get 'em down," Megan told her daughter. She makes sure Jules takes her daily dose — not of cough syrup or pills, but peanut M&M's.
For Jules, it is medicine. When Jules was 6 months old, Megan and her husband, Robb Jones, learned she had a peanut allergy. But they didn’t understand how severe it was until Jules had her first anaphylactic exposure a year later.
"It is a life-or-death situation quick, like minutes," Megan explained.
Jules’ eyes became really swollen and she had “extremely labored breathing,” Megan described. They rushed Jules to an InstaCare, where a doctor gave her an EpiPen and called 911 for an ambulance to take her to Primary Children’s Hospital.
“It's just terrifying," Megan said.
After that experience, Megan and Robb knew they needed to create an action plan in case Jules had another allergic reaction. They put together several medical bags complete with EpiPens, an inhaler, and an antihistamine for home, school, their cars, and their babysitter. Megan said they are always prepared for the worst.
While Jules was still young, Megan said it was fairly easy to control what she ate and prevent cross-contamination; but as she grew older, it became more difficult.
“When she (Jules) started going to preschool and kindergarten, and now first grade is when it's gotten super challenging,” she explained.
Megan said she was used to having frank conversations with friends, teachers and other parents about Jules’ allergy. “That was probably one of the hardest things, is when I'm communicating to people how severe her allergy is,” she said.
She said it was difficult for people to understand the difference between an intolerance and severe allergy. But for the Joneses, the allergy ruled their lives.
“We can’t go on vacations without thinking about what would happen if she had something. We can't go on planes without knowing that there's a high probability of someone around us eating peanuts or her touching something that's been exposed,” she said. “I wouldn't let her go to birthday parties a lot; holidays were horrible!”
Megan said they lived in a constant state of fear. “I cannot explain the silo that we lived in," she said.
By the time Jules had her second scare, she was 5 years old. She was at a friend’s house for a playdate and ate Reese's Pieces without realizing it was made of peanuts. “She came around the corner, and she was holding her neck … and she said, ‘My throat hurts. My throat hurts. I need a drink.'’’
Megan said Jules’ throat immediately started to close off, her eyes and lips started to swell, and she was very red in the face.
Once again, Megan gave her an EpiPen, called an ambulance and rushed her to the emergency room. Fortunately, Jules had survived another reaction, but Megan and Robb realized avoiding peanuts altogether wouldn’t always be realistic.
"I tried to create this, like, little bubble for her; but I couldn't forever,” Megan said.
That’s when they decided to meet with Intermountain Healthcare's Dr. Libby Kelly, an allergist at Intermountain Healthcare's Holladay Clinic. Kelly suggested Jules start oral immunotherapy (OIT) to build up a tolerance to peanuts.
"Peanut immunotherapy is done orally, where we actually start getting tiny, tiny doses of peanut under the tongue, or directly into the mouth, that's swallowed,” Kelly explained. “The peanut is so small you wouldn't even be able to taste it or smell it, it's diluted down so far."
Each week, Kelly ups the dose and monitors Jules for an hour in the office. If she doesn’t have a problem in the office, Megan brings Jules home and gives her the dose daily throughout the week. Megan also monitors her for the following hour.
At first, Jules was nervous. "What if it doesn't work and I have an allergic reaction and I almost die?” she worried.
But after seven months of therapy, it's paid off.
Today, Jules can tolerate eating a couple of peanuts a day. She can choose to eat peanuts on their own, or peanut M&M’s.
"It's a huge relief to know that an accidental exposure isn't going to end up killing your child or yourself,” Kelly said.
"She (Jules) goes to school and I don't worry about the kid next to her eating a peanut butter sandwich,” Megan said. “She can just be normal."
The Joneses are hopeful Jules will be able to eventually eat peanuts without any limitations, after the next round of OIT.
Megan said she is still speechless. “I never thought that we would get to this place,” she said, adding that she is grateful to Kelly for suggesting this to their family.
“She (Dr. Kelly) has this great balance of looking at Jules as a patient, but then just looking at our family and our quality of life,” she said. “There's no way that we could have done it without the friendship and the support that she gave us. She is such a good doctor.”
Kelly said OIT won't cure a peanut allergy, but it can help people control an allergy. While she has seen OIT successfully work for many patients, Kelly said it's still an experimental therapy and is not yet approved by the U.S. Food and Drug Administration.