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Reid's Story: Conquering His Fears
Watching 10-year-old Reid devour his Delmonico steak, it's hard to believe this active child once dropped from 91 to nearly 70 pounds after eating almost nothing for five months.
In April 2008, Reid choked on a slice of ham. A few weeks later, it was a piece of pasta. Then in June 2008, Reid choked on a piece of beef jerky and needed the Heimlich maneuver to dislodge the food. After the third incident, Reid stopped eating solid foods and was so terrified to take a bite that even sitting at the dinner table with his parents and 5-year-old sister was agony.
"I wanted to eat," said Reid, who existed on chicken broth, Hershey bars, milk and squeezable yogurt during those months, "but I would deny that I was hungry." In social situations like birthday parties, Reid would eat icing but refuse the cake. Even his mom's one-time offer to pay Reid $40 to eat didn't help.
For Reid's parents, Darrell and Donna, frustration over Reid's refusal to eat soon turned to fear and concern as doctors continued to rule out medical conditions including achalasia, a disease of the esophagus muscle, or enlarged tonsils as the underlying cause.
Finally in Sept. 2008, the family brought Reid to the Feeding Program, where after an initial evaluation, Reid began outpatient feeding therapy.
CHoR's Feeding Program
Established in 1998, the Feeding Program is designed to help children who have a medical or behavioral issue that limits their feeding and growth.
For conditions ranging from picky eating to failure to thrive, the program offers a continuum of care provided by an interdisciplinary team of specialists who join their varied expertise to address the multiple factors involved with eating.
The program's team-based structure supports a comprehensive approach that incorporates medical and developmental needs, behavioral and oral-motor feeding issues, and family education, training and support.
Team members include a dietitian, nurse, physician and nurse practitioner, as well as psychologists and occupational and speech therapists with special training in feeding issues. Services are designed to minimize feeding difficulties, assist in the development of age-appropriate feeding skills and maximize overall health status.
"CHoR's Feeding Program offers outpatient feeding therapy as well as an intensive day treatment program, which is the only one of its kind in the area," said Mary Tognarelli, M.S., R.N., CPNP, CNA, director of the program. "The program is successful because of the multidisciplinary model that allows behavioral, therapy, medical and nutrition staff to develop and implement a treatment plan together."
The day program treats children with moderate to severe feeding issues five days a week at the Brook Road Hospital and includes four treatment sessions a day for six to eight weeks. Outpatient therapy sessions tend to last one hour and occur anywhere from a few times a week to once a month.
The Journey Begins
"I think we expected almost immediate results with the Feeding Program," said Darrell of their first outpatient visit. "We felt relief that we finally found a program to help." And while Reid eventually met his goal of eating chicken wings from his favorite upstate New York restaurant, his progress didn't happen overnight.
"During the first couple months, Reid was scared, defiant and anxious," said Amber E. Bishop, M.S., OTR/L, the occupational therapist who conducted joint treatment sessions with Gail C. Argenbright, Ph.D., psychology. Some of the earliest sessions lasted two or more hours while Amber and Dr. Argenbright worked with Reid to try a quarter-sized bite of applesauce, a food he used to like.
Once Bishop and Argenbright determined that traditional behavioral protocols weren't working, they developed a reward system that gave Reid more control by allowing him to complete his feeding "homework" by 8 p.m. each night to earn rewards like outings with his dad or uncle. His treatment plan also included a referral to a psychiatrist who prescribed medicine to help manage Reid's anxiety.
"The combination of medication and therapy created the perfect environment for Reid to progress," Bishop said. With support from his family, including sister Rachel who would hold her brother's hand and cheer, Reid began adding foods back into his diet and was able to try small bites of his Granny's turkey dressing, turkey, green beans and mashed potatoes at Thanksgiving.
With Argenbright's assistance, Reid learned to address his anxiety and created a special system called "flip the switch" that taught him to flip the switch to positive thinking anytime he was intimidated about trying a new food.
"It was neat to watch Reid as his level of confidence improved," Bishop said of the list, drawings and charts Reid made to highlight the new foods he'd eaten toward the end of last year. "His entire demeanor shifted."
An Unlikely Supporter
Reid loves playing guitar, being outdoors and watching one of his favorite wrestlers, Jeff Hardy. One evening while watching TV with his mom, Reid saw an interview where the wrestler said, "There's nothing to fear but fear itself." Reid felt "this was a message sent just to me" and adopted the motto during his therapy sessions.
As Reid progressed, his treatment sessions moved from twice a week to once a week, then every other week. His family was always involved, either by being in the same treatment room or watching outside on video, so they could help Reid continue his work at home.
"Every tiny success was celebrated," Donna said, "because it was a big step for Reid." When he was discharged from the Feeding Program in May 2009, Reid had regained his lost weight and was eating more than 60 foods without anxiety. He received a graduation certificate and celebrated with his family and therapists at the hospital.
"I don't know what we would've done without CHoR," Donna said. "The Feeding Program staff supported us, guided us, listened to us but most of all, cared about us as a family. We're so grateful to these very dedicated and special people."