Kelsey Musgrave had a minor stroke when she was born in 2012 and was diagnosed with cerebral palsy when she was 14 months old. Her mom, Sarah Musgrave,
enrolled her in TMC Pediatric Therapies in October 2013 where Kelsey attended physical and occupational therapy sessions once a week, oftentimes with therapist Caren Barman. Kelsey was making progress, but Barman thought she’d be a great candidate for an intensive program that was part of a research study brought to TMC by long-time Tucson pediatrician Dr. Duke Duncan, who has studied cerebral palsy for much of his decades-long career.
His study aimed to see if a modified version of the inpatient therapy the Chinese provide to children with cerebral palsy would work on American children in an outpatient setting.
In China, as soon as a child is diagnosed, doctors advise the parents to admit the child in the hospital for three months. During the stay, the child receives intensive physical therapy, occupational therapy, hydrobaths with herbs, deep massage and acupuncture – all day, five days a week. In the United States, the standard of care is for a child to receive physical therapy once a week and occupational therapy once every other week.
Duncan wanted to see if more frequent, more intense therapy really was more effective, and led to better outcomes for these children. During a meeting with a group of Chinese doctors at a children’s hospital in Anhui Province, they asked him what the standard of care is for children with cerebral palsy in the United States. After explaining, he told them, “I’m not very happy with that because I don’t see much improvement with these children.”
As Duncan asked them what they do, the Chinese doctors got huge grins on their faces. “They said, ‘come with us. We’ll show you.’” As they marched him down a huge hallway, he saw a little boy, who was around four years old and all smiles, walk out of his room using a walker. The doctors said that three months prior, the child was confined to a bed because he couldn’t walk. Duncan didn’t believe them at first. “I said, ‘come on – you’re kidding me. What did you guys do?’” said Duncan. They explained how providing services five days a week allowed the child to make the most progress.
Duncan thought to himself, “what if we could accomplish something similar – in an outpatient setting. Would it be effective?”
He teamed up with TMC Pediatric Therapies. They approached the TMC Foundation about funding a study that would hopefully answer this question and were awarded a grant funded by the Armstrong McDonald Foundation and Children’s Miracle Network.
About two dozen families, including Kelsey’s, were invited to participate in the study. The children had to be between 18 and 36 months old, and had to have mild to moderate cerebral palsy. During the intensive program, Kelsey received therapy five days a week for 12 weeks. Four days a week, she’d be at TMC Pediatric Therapies where she would receive 30 minutes of physical therapy followed by 30 minutes of occupational therapy. On the fifth day, she would receive therapy in her home. Duncan carefully followed the progress of each child. The outcomes were significant and beyond what would be expected for children typically developing with cerebral palsy.
Musgrave couldn’t believe the strides her daughter made. “Just to see the progress that she made in those 12 weeks was amazing," she said. “She went from barely crawling to taking steps and walking. And she started using her right hand, which she never really did before the intensive therapy. We saw some great milestones during those 12 weeks.”
At the completion of the 12-week study, Kelsey continued to attend therapy sessions twice a week. Insurance coverage has currently forced her to now attend just once a week. “Her progress is still improving, but not as fast as it was during the intensive therapy,” said Musgrave, who is a believer that more frequent, more intense therapy is effective.
“We saw her make big strides in what she’s able to do day-to-day. If we could continue to come four days a week, I’d do it in a heartbeat," she said. "This study was the most amazing thing that we’ve been fortunate to be a part of, and I’m so grateful to the TMC Foundation for funding it.”
In an effort to build on the momentum of this promising research, TMC is collaborating with Phoenix Children’s Hospital, another Children’s Miracle Network hospital, for further studies about therapy for children ages 12 to 36 months with cerebral palsy.