New Windsor infant with cerebral palsy seeing positive results with telehealth occupational therapy

Jul. 17--Health care institutions across the country have turned to telehealth technologies to continue providing care during the coronavirus pandemic, and one Carroll County infant has seen some benefit from that remote treatment, her mother says.

Crystal Dorsey, a New Windsor resident, has a 10-month-old daughter, Natalie, who suffered two strokes while Crystal was pregnant. Natalie was born with spastic hemiplegia cerebral palsy and has struggled to use the left side of her body and complete movement with her left arm.

Natalie started receiving occupational therapy via telehealth from the Specialized Transition Program at the Baltimore-based Kennedy Krieger Institute when she was 8 months old to help improve her strength. She was first treated in the institute's neuro-developmental clinic, similar to a neonatal intensive care unit (NICU) for medical needs, prior to transferring to the STP.

"For a young child like Natalie, our role is really to direct a parent or caregiver to be able to carry out treatment activities, anything I would typically do in clinic," said Nicole Andrejow, MS, OTR/L. "I'm instructing moms how to kind of go about setting up toys in a specific position, what sort of directions or cues to give, how to kind of provide assistance or demonstrate when it's needed in order to teach Natalie what to do."

Spastic cerebral palsy is the most common type and affects about 80% of people with cerebral palsy, according to the Centers for Disease Control and Prevention website. Spastic hemiplegia cerebral palsy affects only one side of a person's body in which the arm is usually more affected than the leg.

The Specialized Transition Program at Kennedy Krieger is an intensive interdisciplinary outpatient program and serves children and adolescents who have neurological or orthopedic conditions by providing them with comprehensive daily therapy, such as physical, occupational, or speech therapy. Andrejow, the department telehealth lead of the program, said that because of the pandemic, therapists had already started to provide therapy via telehealth when they brought Natalie on board.

"When this first started in March, we switched our entire caseload to telehealth," Andrejow said. "A full day's worth of patients that all of our therapists would typically see in clinic were switched over, so essentially 100% of our patients are telehealth and have been for a number of months."

Kennedy Krieger averages 4,000 to 5,000 telehealth appointments per week, a spokesperson said, and therapists use video conferencing to provide telehealth services so families can see what they are doing and vice versa.

Natalie participated in the Specialized Transition Program's infant constraint induced movement therapy program with Andrejow as her lead therapist for one hour every day for four weeks. The program is designed to set patients up for success so they get positive experiences using the ligament that's more difficult for them to operate.

Natalie completed that program and has since transitioned to the standard outpatient therapy department where she receives outpatient therapy from Taylor Parete, OTR/L, once a week for one hour.

Crystal said Natalie's improvement has drastically increased since her telehealth appointments began. She has gained more control over her body movements and has been using her left arm with little to no encouragement from her therapist.

"Nicole was really good about explaining why we would be doing certain movements, and she let me know what I needed to change," Crystal said. "It could sometimes be the smallest change and she would explain to me how we're trying to simulate Natalie's natural development through the therapy."

Crystal said she could feel a difference in Natalie's body just from picking her up after a week's worth of daily sessions, and Natalie has also learned to roll over on her own using her weaker side.

"Both Nicole and Taylor and all these people that we've come into contact with, they just all seem so passionate outside of if being their daily occupation," Crystal said. "They just seem so passionate about helping Natalie reach her full potential and it's impressive to me that they've had to adjust their entire routine like a lot of occupations have to move into telehealth and have taken on entirely different roles."

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Andrejow said she and her colleagues have generally seen progress with the Specialized Transition Program and there were not too many concerns when the department moved completely to telehealth. Families have continued to be just as interactive in their children's appointments, as they would have been in person.

Kennedy Krieger intends to continue providing services via telehealth, even after the pandemic has ceased.

"I think Kennedy Krieger serves so many families who have lived out of state and typically have to travel to come see us," Andrejow said. "Having an opportunity where telehealth might be a beneficial way to serve some of these families so that they don't have to have the expensive burden of traveling to see us would be an awesome opportunity.

"We're very hopeful we'll be able to continue to provide these services."

Crystal has been able to become a better advocate for her daughter as a result of working with telehealth, she said, and watching Natalie make improvements has been rewarding for her and her therapists.

"I feel like I got an honorary degree in occupational therapy," she said. "Nicole was an awesome coach and without that, we wouldn't have been as successful with Natalie's progress."

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