Crohn’s Disease: Sydney’s Story

Sydney was 3 when she started showing signs of sickness. She was vomiting at random times and it didn’t seem related to any particular foods or eating patterns. The incidents weren’t frequent, just once every two weeks or so, but this went on for about six months, and naturally worried her parents. Her pediatrician ruled out food allergies, but couldn’t identify a cause.

Then Sydney started getting lethargic. She wasn’t joining in activities at preschool, and she rarely felt like eating. Sydney also started getting fevers at night, so her pediatrician ordered blood work. The results showed indications of inflammation, which pointed to inflammatory bowel disease (IBD). There are two types of IBD, ulcerative colitis and Crohn’s disease, both chronic conditions that affect the gastrointestinal (GI) tract. Sydney didn’t have some of the common symptoms for IBD, such as diarrhea, so her parents, Amy and Keith, wanted confirmation of her diagnosis.

Finding an answer at CHOP

The family was referred to Children’s Hospital of Philadelphia (CHOP), where they met with pediatric gastroenterologists Robert N. Baldassano, MD, and Lindsey G. Albenberg, DO. Dr. Baldassano is Director of the Center for Pediatric IBD, and Dr. Albenberg is a researcher with the Center who specializes in treating patients with IBD. The Center for Pediatric IBD is one of the largest of its kind in the U.S.

Diagnostic tests were conducted, including an upper GI series and a colonoscopy, as part of which tissue samples (biopsies) were taken from the colon and ileum (the final section of the intestine). The tests confirmed that Sydney did in fact have Crohn’s disease, in an unusual presentation without diarrhea. The inflammation was in her ileum.

The doctors discussed a range of treatment options with the family, including medication and nutritional therapy. They settled on short-term treatment with a medication that reduces inflammation and stomach pain in patients with IBD, combined with longer-term nutritional therapy using a nasogastric (NG) tube passed into her stomach through her nose. With the NG tube, a pump pushes a measured amount of nutritional therapy formula into the stomach.

Sydney’s parents were shown how to insert the NG tube and how to use it to feed Sydney prescription formula. Sydney was given a measured amount of formula during the evening and overnight. During the evening sessions, she wore a backpack, and while she was sleeping the formula hung in a sack from a pole above her bed (in much the same way fluids are given in a hospital).

Sydney’s breakthrough: A special flower girl

“Within two weeks she was feeling better,” says Amy. “She was running around more and she was gaining weight. She had been skin and bones before.”

Sydney had been asked to be a flower girl for a wedding that fall, and the date was just two weeks after she began using the feeding tube. “We were nervous about how she would be the day of the wedding, considering how lethargic she had been for months,” says Amy. “We were also worried that the couple would be upset that her tube would be in for all the pictures. They couldn’t have been more understanding. Sydney brought her backpack to the reception and was dancing and having the best time while she was receiving her feeding."

“she danced the whole night, which showed us her energy had returned. next to the wedding couple, she was the star of the event. we couldn't have been happier.”

Sydney’s recovery continues under the care of Dr. Albenberg. She had been at the 30^th percentile for height and weight in the months before she turned 4. Now 10, she’s at the 75^th percentile for height and the 55^th for weight.

‘They came through and then some’

Today, Sydney is an active, happy child. She’s engaged in a wide range of activities, including drama, chorus, band, hip hop and tennis. She’s active with her church youth group and is a well-rounded student.

She’s still supplementing her nutrition with the NG tube, but that has gotten easier over time. “It was very difficult at first,” Amy explains. “When we had to change the tube she would cry. We had to hold her still. Now I do it with her and it takes 30 seconds. She drinks cranberry juice while I do it, which helps guide the tube.”

The family feels lucky to have received their care at CHOP from a medical team with such deep expertise in treating IBD.

“Sydney’s medical team at CHOP have all been so comforting and supportive,” Amy says. “They told us they would get her into remission and they were right, which seemed hard to imagine at the time. They came through and then some. We are never rushed at our appointments. They take the time to answer all our questions and concerns, no matter how long as it takes. It feels like we are all a big family with the same goal of keeping Sydney healthy and finding a cure for IBD.”