When Barb K.’s son Zach was diagnosed with pediatric Crohn’s disease—a chronic inflammatory bowel disease—before he was even two years old, she and her husband, Ron, were devastated. They fretted over what his life would be like: Would he be able to go to school? Would he grow? Would he make friends and participate in activities?
Following the advice of Zach’s doctors, Barb and Ron encouraged their son to become as self-sufficient as possible, which included taking responsibility for his nutritional therapy. For most of his life, Zach’s source of nutrition has been the Peptamen® family of formulas, specifically designed for people who have medical conditions that cause malabsorption of nutrients.
The family met with a group of Nestlé Health Science employees as part of the company’s Connections program to discuss how Zach learned to take charge of the nutritional management of his pediatric Crohn’s disease at an early age.
For Zach, starting early was the key
At first, Barb and Ron were extremely protective of their young son. “We wanted to keep him in a bubble, and not let him play.” But their doctor told them, “You let him be a child. You let him do everything.” This included trips to Mexico and Disney. “We always had a backup plan. In Orlando, we had a doctor ready just in case. So if anything happens, you’re a phone call away,” Barb says.
Barb also relates her father’s concerns. “He didn’t think Zach would be able to go to kindergarten because he wouldn’t be potty-trained. But our doctor assured us he would potty train like every other child. And he did.”
At five years old, Zach was participating in his treatment
At the tender age of five, Zach learned how to place his own feeding tube to infuse his Peptamen® formula. “I was given the option of having my parents or the doctor put the tube in, but I wanted to try and do it myself. The nurse showed me how to do it,” says Zach. Barb and Ron also encouraged Zach to choose his day off from the feeding tube. “Over time, I started weaning myself off the tube. I could pick the day…so if I wanted to sleep over at my friend’s house without the tube, I could do it.”
Helping others with pediatric Crohn’s disease is also empowering
Zach and his family have created a fundraising event to help others with Crohn’s disease. Says Barb: “It’s my way of empowering Zach and making him feel that he has control over this disease. That he can be more powerful than this disease.”
Barb continues, “It’s actually empowered our whole family. Our goal is to build awareness and let everybody feel that they can be a part of making a difference.”
Inspiring others to try nutritional therapy as part of their Crohn’s management
In addition to taking charge of his pediatric Crohn’s disease nutrition regimen at the age of five, young Zach also started speaking to families about his experiences with Crohn’s and answering questions—mostly about nutritional therapy. Zach believes his talks have motivated others to better understand the important role that nutritional therapy can play in their Crohn’s management. “Nutritional therapy has really helped me out. If it can help other people, I hope I had something to do with that.”
Growing up means more independence—and more choices
As he’s gotten older, Barb and Ron have allowed Zach to make his own food choices, with mixed results. “If we notice that there’s a problem, or if he starts to feel that something bothers him, then he has to make that decision not to eat it. The only thing the doctors said he absolutely should not eat is popcorn. He knew it. But he would go to school and eat popcorn,” says Barb. “He has to pay attention to his body. I can’t do it for him. He’s almost an adult. He has to take responsibility for this disease. Overall, he’s done really well. Crohn’s doesn’t stand in Zach’s way.”
Want to know more about living with Crohn’s disease?
Read our Q&A on Crohn’s disease with Aimee Henrikson, Registered Dietitian.
Want to know more about feeding tubes and children?
For information on tube feeding and children, visit our online guide for tube-feeding information and resources.