Gastroparesis: Arlene's Story

Almost from the start, Arlene simply could not eat.

Her mom, Martha, introduced formula and pureed foods to her diet when Arlene around 6 months old. Immediately, Arlene had trouble. “She couldn’t come close to finishing a bottle,” says Martha. “She’d swallow one bite of food and start to cry, sweat, and even faint.”

Concerned, Martha and Ricardo, Arlene's dad, took her to a local hospital. At that first visit, a series of tests showed a lot of air in Arlene’s stomach, but the doctors offered no definitive reason for her distress. They suggested she might have a gastrointestinal bacterial overgrowth.

But Arlene’s symptoms never let up, and feeding her was a nonstop struggle. Over the next five years, Martha and Ricardo kept going to different doctors and hospitals trying to find answers. But the cycle just repeated: Arlene would get a short-term treatment, such as antibiotics for presumed small intestinal bacterial overgrowth, but never a lasting solution.

Search for answers

Arlene has a complicated medical history, including diagnoses of autism, epilepsy, attention deficit hyperactivity disorder (ADHD), Tourette syndrome, gastroesophageal reflux disease (GERD), functional dyspepsia, functional constipation, aerophagia, muscle weakness, lactose intolerance, and self-excoriation disorder. Her doctors debated how much of her feeding issues were medical versus behavioral, making the search for an effective treatment even harder. As they debated, Arlene’s quality of life was declining despite her family’s best efforts. Arlene could eat only three spoonfuls of food per meal. Her poor diet kept her from gaining weight, made her prone to infections, and affected her ability to sleep.

“It was heartbreaking,” Martha says. “She would see us eating and be curious about what was on our plate — but then if she tried it, she would get sick. She couldn't even eat simple things like applesauce. They told me so many times she was just a picky eater. But picky eaters don’t sweat and faint from a bite of food.”

During yet another local hospital visit — and afraid Arlene’s condition was reaching a point where she might not fully recover — Martha asked to see the most senior doctor on staff. During the appointment, she said she needed a referral to a hospital that could do more for Arlene.

“The doctor told me: ‘If you want to make a difference in her life, you need to go to CHOP and I want you to see Dr. Boyle in the Motility Center.’” Having been disappointed before, Martha asked what would be different at CHOP. “She said other hospitals would do the same things we had been doing that didn’t work. But CHOP specialized in treating kids with more complicated cases. She said they would try everything to help her,” says Martha.

Intrigued, Martha did some research before making an appointment. Martha says:

“I learned as much about CHOP as I could before we went. After that, I had a feeling that CHOP was where she would find the hope she needed. And I was right!”

Mystery solved: gastroparesis

Arlene first came to CHOP in December 2012, and was seen by John T. Boyle, MD, a gastroenterologist in the Division of Gastroenterology, Hepatology and Nutrition and co-director of the Suzi and Scott Lustgarten Center for GI Motility.

Dr. Boyle reviewed Arlene’s medical history, and in addition to a standard exam, he ordered a gastric emptying study to determine how quickly food passed through her stomach. The results showed Arlene had gastroparesis, a motility disorder of uncertain cause. In Arlene’s case, she could barely move liquids through her stomach, let alone heavier, solid foods.

Dr. Boyle prescribed a motility-stimulating medication. Within three weeks, Arlene’s symptoms, such as bloated stomach, pain and nausea had decreased, and she was eating twice as much per meal.

Over the next three months, with the addition of medications to reduce gas and minimize her newly diagnosed lactose intolerance — an issue that had been masked by her other symptoms — Arlene was feeling better physically. But the years before getting a proper diagnosis had created another significant challenge: Arlene associated eating with feeling terrible. She was literally afraid to eat a regular meal.

Help at the Feeding and Swallowing Center

In December 2014, Arlene was referred to Sherri S. Cohen, MD, MPH, Medical Director of the Pediatric Feeding and Swallowing Center at CHOP, a multidisciplinary center that uses a comprehensive approach to help children who have difficulty eating and/or swallowing.

Arlene’s Feeding and Swallowing Center team recommended continuing GI treatment with Dr. Boyle. They determined Arlene had developed a behavioral issue after so many years of food causing her physical distress. “She would take a bite and keep it in her mouth but not swallow,” says Martha. “You can’t make another person swallow if they really don’t want to.”

For Arlene, becoming comfortable with this new-to-her sensation was more challenging due to her autism and ADHD. She didn’t want to sit in one place for treatment, and she resisted change.

Arlene and her mother came to the Feeding and Swallowing Center's Intensive Day Program for several weeks in 2014 to work toward two goals: Get Arlene more comfortable eating and give her family the tools to help her through the process.

Clinicians used a variety of methods to help Arlene gradually adjust to eating. For example, Arlene could “earn” time playing with her iPad by taking additional bites of food. Martha had her own work during these sessions. Feeding and Swallowing Center staff taught her strategies to better monitor Arlene’s intake and nutrition, help ease Arlene’s now-occasional symptoms, and find better ways to communicate how she was feeling.

“It was a long, slow process. I felt bad sometimes, like we were pushing her. But we knew if she didn’t eat, eventually she would need surgery. We didn’t want to have to do that,” says Martha. “I knew she needed to go through it because it would give her a better quality of life. I needed to take this opportunity to help her.”

It took time and patience, but when Arlene “graduated” from the Feeding and Swallowing Center, she was able to eat soft foods with less difficulty and began to gain weight.

CHOP made the difference

Martha cites the expertise and multidisciplinary approach of CHOP’s doctors as a key reason Arlene is doing so well today. “One thing I love about CHOP is that the doctors all work together. She sees a lot of specialists there and they all coordinate,” says Martha.

“Without them, I don’t know where my daughter would be today. They go beyond what other doctors would do to help.”

Martha notes Arlene used to cry before doctor appointments, because they were such misery for her. After her experience at CHOP, she’s now calm and understands doctors are there to help.

Martha feels her whole family has benefitted from going to CHOP. “CHOP doctors take the time to go the extra step, to answer questions, to write letters for school or insurance,” she says. “I appreciate knowing they will listen to my concerns, take us seriously, and help her in every way they can. Everyone at CHOP has demonstrated an unwavering commitment to improve Arlene’s life. They are more than excellent doctors; they are beautiful human beings.”

Now 11, Arlene continues to be seen by several specialists at CHOP, including Dr. Boyle and dietitian Sarah Weston, RN, CSP, LDN. They’ve made some adjustments to her medications over time, but she has a stable treatment plan in place. She continues to improve, loves to swim, and is looking forward to starting sixth grade in school. (Previously, her medical needs meant she had to be home-schooled.) And she has more interest in eating now that she understands it can be pleasurable.

Martha and Ricardo acknowledge it wasn’t always easy to follow such an intensive and time-consuming treatment plan — but they say it was more than worth it. “It took us years to get to CHOP, and once we were there, we were taking every opportunity to get help,” Martha says. “We want our daughter to succeed. It requires commitment from the adults to do what the child needs.”