By UNIVERSITY OF IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — Livia Jackson (Glenwood, Iowa) is energetic, bold, and fearless. These qualities, along with a positive outlook on life, have helped her persevere through some truly difficult times.
“When Livia was little, we noticed she was vomiting a lot,” says her mother, Holly. “When anybody in the house got the flu, they would be over it within 24 hours. Livia’s vomiting lasted longer than that, and she would have to go to the emergency room or to the doctor’s office to get it stopped.”
Livia experienced frequent bouts of vomiting for years, and her family consulted with many local doctors to find the cause. Her tonsils were removed at age 2 when doctors thought she had an extreme gag reflex, and she was diagnosed with acid reflux. She even underwent dental surgery at age 5 to address the enamel deterioration related to her recurring vomiting episodes.
“With every episode, our lives stopped,” says Holly. “Our pediatrician recommended a stomach biopsy, MRI, CAT scan, ultrasounds — anything to try to figure out what was wrong. They ran several blood tests, and everything came back normal.”
Without a correct diagnosis, the Jacksons struggled to find relief for their daughter.
“It was exhausting. Each time we went to the doctor’s office, I felt as if nobody listened, nobody understood, and they felt as though I was being an overzealous parent,” says Holly. “My instincts told me there was something else wrong, but we couldn’t find the right person to help us get the answers we needed.”
After tests came back as inconclusive, Livia was referred to the University of Iowa Stead Family Children’s Hospital to meet with pediatric gastroenterologists and neurologists. She was diagnosed with cyclic vomiting syndrome, a condition marked by frequent episodes of severe nausea and vomiting. In Livia’s case, these episodes can last anywhere from an hour to a week.
“For people to just blow it off and give her a hard time, it made me really angry,” says her father, Jonathan. “(To get a diagnosis) was absolutely wonderful.”
“I knew there was something wrong with my child that nobody else could recognize,” adds Holly. “It’s estimated that less than two percent of the population has cyclic vomiting syndrome, which is why they try to rule it out with so many other tests.”
Livia’s episodes can be triggered by different factors — weather changes, excitement, anxiety, and even the smell of garlic. Growing up, Livia’s excitement surrounding holidays and birthdays often led to her missing them altogether.
“Livia would get so excited for her birthday parties, but she was unable to have a birthday party with her friends until about the age of 9 (due to her episodes),” says Holly.
In addition to nausea and vomiting, her episodes can be accompanied by severe diarrhea, headaches, and stomach cramps. Livia’s body gives her warning signs before an episode, including extreme leg or arm pain and migraines. When these warning signs arise, she takes medication in an attempt to prevent a full-on episode.
Today, Livia rotates between different daily medications and undergoes regular testing. Since the Jacksons live four hours from Iowa City, Livia’s UI Stead Family Children’s Hospital care team maintains frequent communication with her local pediatrician and family.
“The communication has always been superb, and it makes us feel like we really aren’t that far away,” says Holly.
The Jacksons are thankful for the pediatric specialists who have made a difference in their daughter’s life.
“They’ve helped us find a new normal,” says Holly. “The doctors here are constantly learning and trying to teach themselves about Livia’s condition, so they can treat her in the best, most appropriate way.”
Jonathan adds, “They truly want to help her get better and help her get through this.”