Crohn’s disease. It’s a diagnosis no one wants, especially a kid. But when Jill Engle heard those two words, everything fell into place. Because after a year of watching her son Henry battle mysterious symptoms, it meant there was an answer.
And with an answer, they could start making him better.
During kindergarten and first grade, Henry struggled with bellyaches. Sore throats. Hemorrhoids. Sores on his mouth. Trouble breathing. Even fevers. The symptoms were random, sporadic and could easily be chocked up to a virus, constipation, or even changes that come with starting school. But Jill “just knew” something more was going on.
“It got to a point where he didn’t want to go outside to play,” she says, recalling Henry’s teacher telling her that, while his twin George played at recess, Henry sat on the sidelines. “That’s not my child,” she remembers thinking, “My child wants to play.”
When a stool sample showed inflammation in his intestines, Henry was referred to Atrium Health Levine Children’s Hospital, named one of the best for pediatric gastroenterology and GI surgery by U.S. News & World Report. After an endoscopy and colonoscopy, his pediatric gastroenterologist – Tiffany Linville, MD – who revealed the diagnosis. “All the puzzle pieces finally were put together and Crohn’s disease answered everything,” Jill says.
Though Crohn’s disease is a common inflammatory bowel disease (IBD), it’s rare in kids as young as Henry, who has what’s called very early onset IBD. It can be difficult to diagnose – since symptoms often look like other things – and traditional treatments don’t always work.
Fortunately, after 9 days at Levine Children’s Hospital, and starting prednisone along with a dose of adalimumab, Henry was already feeling better. Though it would take months for him to get fully back to himself, his mom saw a difference right away. Not only was his personality shining through, but after months of struggling to eat more than a few bites, his appetite was back.
He even had his favorite – fish sticks – special-delivered to the hospital room.
Being healthy, happy and Henry
Henry doesn’t know it yet, but his mom is picking him up early from school to go camping in Asheville. From hiking to exploring the great outdoors, it’s the kind of thing he loves to do. And the kind of thing he didn’t have the energy for last year.
Today, 8-year-old Henry is a lot different from the boy who spent a year on the sidelines. He travels with his family, rides his bike and even hit the game-winning home run at his last baseball game. In addition to his gastroenterology team, Henry works with a dedicated pediatric IBD nurse navigator, dietitian, social worker and psychologist, as well as a pediatric endocrinologist – all teaming up to help him live the life of his dreams.
“I tell all my patients and their families that I never want their diagnosis to hold them back from anything. There are doctors, lawyers, teachers, professional athletes and everything in between who have IBD. I’m always striving to ensure that each of my patients is living exactly the way they want to,” says Dr. Linville.
Jill’s grateful for the care Henry receives at Levine Children’s Hospital. She likes being able to see Henry’s test results before appointments in MyAtriumHealth and having all his specialists in “one central station.” But mostly, she’s thankful she found someone who would go the extra mile for her son. “When I knew it was more than a bellyache or virus, they listened. They called in GI and did the extra testing. And more importantly, they didn’t send us home with a Band-Aid or temporary fix,” she says.
In fact, thanks to Jill’s mother’s intuition and Dr. Linville’s team, Henry got more than the right testing and diagnosis – he got award-winning care. And though there’s no cure for Crohn’s disease, Henry is now in remission.
Jill hopes that one day her son’s story will help others, bringing light to a complex illness and showing that Crohn’s disease won’t stop him from being healthy, happy and Henry.
