For Carter Peiffer, an occupational therapy session with Sarah Terry will usually involve food. And making a mess with food.
The mess is by design. A puddle of PediaSure on the table is fair game for Carter to write his name in, drive a toy car through or give a sip to Elmo. He might pull a straw from a cup filled with the nutrition drink and sniff (good) or take a tiny taste (better) from the end of the straw.
It’s all about making food fun for Carter, giving him positive experiences. He and food have had a rough two years. Through a series of life events, Carter went from a happy, active 2 year-old who would eat lots of different foods to a 4 year-old who would only eat strawberry banana yogurt — and it had to be Gerber’s. The lack of variety and nutrition in his diet over time left him with a severe vitamin C deficiency and a case of what used to be called scurvy. That caused his bones and muscles to weaken, to the point where his bones became brittle and he couldn’t walk or even stand without help.
Let’s go back to the beginning. When he was 2, his mother Desiree said she noticed Carter was a little delayed in speech. But he was otherwise active and healthy. Then he gradually began to cut out some foods, starting when Carter’s brother was born. Around the same time, his grandmother was in the hospital for an extended period following heart surgery.
These new stresses in his life caused him to become even more picky with his eating, to the point where all he would eat was the yogurt.
In March a year ago, Carter was running around playing when he tripped and fell. He ended up breaking the growth plate in his left knee, which required a knee immobilizer. A month later, he fell again — still wearing the immobilizer on his right knee — and broke the growth plate in his other knee.
After another round of medical visits, doctors at Children’s Hospital of Philadelphia in May found multiple tiny fractures in his bones and sent him to CHOP’s emergency department for an immediate, intensive examination.
Their conclusion: Carter’s increasingly limited diet for more than a year had caused a dangerous vitamin C deficiency that had weakened his bones and left him susceptible to fractures. His overall medical state was as fragile as his little brittle bones.
He spent nine days at CHOP in May receiving treatment and starting inpatient therapy. Later that month, after he was sent home, Desiree called Jen Bachman, our social services director, to arrange starting services at Schreiber.
In early June, Carter had his first physical therapy visit. After not being able to put any weight on his legs because of his knee injuries, step one in his recovery was relearning how to walk. He did aquatic therapy in our therapy pool with Megan Campbell Roland, and PT in the gym with Laurie Panther.
Desiree said Laurie noticed some sensory issues and suggested Carter be evaluated for occupational therapy. In September, doctors diagnosed him with autism and sensory processing disorder, and he started working with Sarah for OT. The work there has focused on helping him expand the variety of foods he ate.
“Carter, what did you eat today?”
Sarah asked the question at the start of a recent therapy session.
“Some peanut butter bread, and I ate some hot dog!”
“You did not,” Mom said. She smiled and gave him a what-are-you-talking-about look. “You had some yogurt.”
“Yogurt,” Carter repeated back, and then swirled some PediaSure around the table with his fingers.
Sarah had a dry erase board next to her with Carter’s eating goals for the session written in blue marker. When Carter accomplished one of his tasks for the session, Sarah had him fill in the box next to that task on the white board.
The work with Sarah on eating is paying off. Desiree said Carter weighed 29 pounds when he arrived at CHOP a year ago and 32 pounds when he left. Today, his weight consistently ranges between 42 and 45 pounds.
“Sarah got him to eat peanut butter and marshmallow (sandwiches),” she said. “He started eating chips. He tried an animal cracker and a pretzel. He seems to like the crunchy stuff.”
It’s a constant process, sometimes painfully slow, sometimes with setbacks.
“When he gets derailed, when he gets sick, he shuts down (and stops eating),” she said. “I’ve had to stay up all night with him to give him water, because getting dehydrated would mean we’d have to go to the ER.”
The progress is obvious, and not just with his eating.
“He’s able to walk and run and is almost back to where he was before all this started,” Desiree said. “He plays on the playground. He goes up and down steps. He’s able to express himself more now.”
Later, she talked with a lot of emotion about what she has seen bringing him to every appointment for the past nine months.
“To see his progress has been amazing. I know (coming to Schreiber) will all end at some point, but everybody has been so amazing. They are like family here, and Carter loves being here.”
After taking two tentative tastes of a strawberry nutrition drink, Carter finishes the session with a reward: a bite of his peanut butter sandwich.