Gavin and Hudson come from a military family. Their father, Christopher, is a Navy pilot. In 2011, Christopher was transferred to a base in Italy. That summer as the family prepared to move, Gavin, then 12, started to have stomach problems. He would vomit after eating, and he had bouts of diarrhea. It didn’t seem like a serious problem at the time, and the family forged ahead with the move.
When they first arrived in Italy, the family shared a hotel room, and they all noticed the frequency of Gavin’s bathroom trips. “He admitted that he was having diarrhea 10 to 15 times a day, and that he was having lots of stomach cramps,” remembers his mother, Kim.
She took him to a pediatrician at the base. Gavin had lost 10 pounds since his last doctor’s visit, at a time in his development when he should have been growing and gaining weight. But tests came back inconclusive. Through the fall, his condition deteriorated. By December, he had lost an alarming 45 pounds and was too weak to walk.
A family’s persistence
“I took him to the hospital and said ‘we’re not leaving until you figure out what’s wrong and start treating him,’” says Kim. “By then he was in a wheelchair and had a feeding tube.”
Her insistence got results. Gavin was medevac’d to the U.S. to a hospital in Virginia. There, he was diagnosed with Crohn’s disease, a form of inflammatory bowel disease (IBD). Crohn’s disease is chronic, meaning there’s no cure yet, but it can be controlled with treatment. Gavin was put on a biologic immune suppressant, which involved regular infusions of a medication that would target substances in the immune system known to contribute to inflammation and symptoms associated with Crohn’s.
It appeared to be working. Within a few weeks, the diarrhea stopped. By the spring, his tests showed no signs of inflammation. Gavin appeared to be on the mend.
But the positive change didn’t last. Ten months into treatment, an infusion produced an allergic reaction, and Gavin’s blood work showed that the disease was coming back. For the next two years, doctors struggled to find a medication that would effectively treat his Crohn’s.
As Gavin battled Crohn’s, his younger brother, Hudson went for a routine physical in 2014 when he was 12. Hudson’s doctor found that he hadn’t gained weight in two years. Then, he started to show signs of stomach problems including frequent trips to the bathroom and vomiting after meals. Soon after, he was also diagnosed with Crohn’s disease. Hudson was treated with steroids and a biologic drug. The steroids affected him badly, and he wasn’t able to walk when he left the hospital. Once he was taken off of the steroids, he improved on medication alone.
Soon after Hudson’s diagnosis, Christopher was transferred to New Jersey. Kim started researching hospitals near their new base and learned that Children’s Hospital of Philadelphia (CHOP) was close by and had a team of IBD specialists. The Center for Pediatric Inflammatory IBD at CHOP is one of the largest centers of its kind in the U.S. When they moved, the family found housing between the base and the city, to be within driving distance of CHOP should Gavin or Hudson need care.
Physical and emotional treatment
As it turned out, Gavin needed help at CHOP right away. The day they moved into their new home, he started running a fever and had blood and pus in his stool. Kim took him to the emergency department at CHOP, where he was seen by Andrew B. Grossman, MD, a pediatric Gastroenterologist in the Division of Gastroenterology, Hepatology and Nutrition (GI) and Co-director of CHOP's Center for Pediatric IBD.
“Dr. Grossman was wonderful from the first time we met him,” says Kim. “Other doctors we’d met over the years would talk to us, the parents, and not to the boys. Dr. Grossman pulled up a chair and started talking directly to Gavin.”
Gavin was admitted to CHOP and stayed for a week until his symptoms were under control. Dr. Grossman talked to the family about enteral therapy, a form of nutrition therapy for IBD, in which patients take in most of their calories through a feeding tube. Since Gavin wasn’t responding well to IBD medications, he was a good candidate to try an alternative method.
Over the next few months, Dr. Grossman weaned Gavin off of his medications, and in the summer of 2015, he began the enteral therapy. Every night before he went to bed, Gavin would put in a nasogastric feed tube (NG tube), and a pump pushed a special nutrition formula into his stomach while he slept.
He responded well to the treatment physically, but the pump interrupted his sleep. Gavin was already struggling with emotional issues as a result of the disease and its treatment, and the lack of sleep made them worse. CHOP was able to help.
“One of the biggest factors in getting Gavin into remission was the support of Behavioral Health,” Kim explains. “He had struggled with guilt, thinking that he had spoiled our dream of living in Italy. He had been an athlete before, and after getting sick he couldn’t do that. He had always been a happy-go-lucky kid, and now he was anxious and depressed, because he just never felt better. They helped him learn how to fall asleep, how to get back to sleep if the pump woke him up, how to deal with anxiety, how to deal with depressive thoughts.”
A family breakthrough
In early 2016, Dr. Grossman asked the family to consider participating in a nutrition study which would allow the boys to wean off of their medications. The Center for Pediatric IBD is a global leader in research, and children with IBD come from around the world to receive the latest treatments and participate in clinical research studies.
Ronen Stein, MD, another CHOP gastroenterologist, was leading a study about treating IBD through a very restrictive and carefully controlled diet, but without a feeding tube or medications. Early results had shown that the method could get IBD patients into remission. This study was assessing if the diet could maintain remission previously achieved by medications. The family met with him and agreed to sign up.
“It was crazy restrictive at the beginning,” Kim says. “We all did it together for the first six weeks. No processed food. Everything made from scratch. Even pasta. I mixed my own spice blends.”
The lifestyle change paid off. After adopting the restrictive diet, Gavin and Hudson felt great and have had no concerning symptoms. It’s still how they manage their Crohn’s today, a year and a half later. Neither is taking any medication, and the feeding tube is gone. Gavin started doing the grocery shopping and most of the cooking. He took on an active role in his treatment, and gained a new sense of independence and ownership over his health. It shows — he’s grown and gained over 10 lbs. since he’s been on the diet.
“Now Gavin's amazing. Through all of the different services at CHOP, he's fantastic. He's 6'5 and 225 pounds now, and the healthiest he's ever been. He works out every day and is going to community college.”
He still deals with feelings of anxiety after the series of health setbacks he experienced over the years, an after-effect he shares with many IBD patients. But he becomes increasingly optimistic and feels more secure about his future as his health continues to improve with the nutritional program.
For Hudson, now 15, it was a little harder for him to maintain his self-control at first. Kim found out he had been cheating on the diet when she got a bill for school lunches. But tests showed that Hudson (who wasn’t following the diet) was experiencing inflammation again, while Gavin (who was following the diet), was free of inflammation. That convinced Hudson to stick with the program, and he’s experienced positive results ever since.
“Hudson has flourished this year. He's back to playing sports. He's getting all A's on his report card. he has really bounced back.”
“The care at CHOP has been phenomenal,” Kim says. “And both boys love Dr. Grossman.” The family appreciates the integrated care the boys have received at CHOP — especially how the GI specialists, dieticians and behavioral health therapists all worked together — and the way the care is influenced by the latest research. Gavin and Hudson’s participation in clinical research will impact how children who come after them are cared for, which gives new meaning to their experience.