Cerebral Palsy: Natalie Davis' Story - Rehabilitation Institute of Chicago

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CEREBRAL PALSY:
Natalie Davis' Story

Standing Tall, Scoring Goals

Natalie Davis with nurse Caryn Summerville and physical therapist France Malate.

Natalie Davis with nurse Caryn Summerville and
physical therapist France Malate from her RIC care
team

Natalie Davis, 11, is no stranger to therapy. She has had ongoing treatments, medication and medical techniques to manage the effects of cerebral palsy since she was a baby. Today, after a muscle-lengthening surgery in January and extended rehabilitation at the Rehabilitation Institute of Chicago — including cutting-edge robot-assisted walking therapy — she is ready to take on the world... or at least the competitors on the soccer field.

Cerebral palsy (CP) is a neurological condition sometimes resulting in orthopaedic consequences, affecting muscle tone, reflexes, coordination, balance and ability to walk. There are severe to mild cases. Natalie has a more mild form called spastic diplegia CP, characterized by difficulty moving and walking due to tight, stiff muscles (spasticity) in her arms and legs. She has worn leg braces since she was a toddler and uses a walker to help her walk short distances, relying on a wheelchair for longer distances. Her difficulties are purely physical; she communicates well, is a good student and has many friends at Emily G. Johns School in Plano , Ill.

Natalie began receiving physical and occupational therapy through a DeKalb County early intervention program when she was six months old. When she was five, she had a rhizotomy-surgery to reduce spasticity by cutting certain nerve roots as they enter the spinal cord. She also received multiple Botox treatments, a cutting edge treatment for loosening muscles and helping ease spasticity.

Like many adolescents with CP, Natalie began to grow, and when her muscles couldn't keep up with the growth of her bones, she stopped seeing improvements in her mobility. This is common for children with CP during the pre-adolescent growth spurt, because as their bones grow, spastic muscles become tighter and tighter. In Natalie's case, tight hamstrings and a rolled-in ankle caused her to walk with a crouch, risking permanent damage to adjacent joints. "Natalie had started using her wheelchair more and more, which can be hard to deal with for a child that age," says France Malate, her physical therapist at RIC.

As Natalie's ability to walk worsened, her parents consulted with local experts Deborah Gaebler-Spira, M.D., director of the Cerebral Palsy Program at RIC and a specialist in pediatric physical medicine and rehabilitation, and Luciano Dias, M.D., a pediatric orthopaedic surgeon on the attending staff at both Children's Memorial Hospital and RIC. In January, she underwent a five-hour surgery at Children's Memorial to lengthen her hamstrings and loosen the tension and spasticity in her leg muscles in hopes of increasing her ability to walk.

Innovative Technology

As soon as her casts were removed, Natalie was admitted to RIC's pediatric unit for intensive rehabilitation with the goal of getting her back on her feet and walking. The pediatric floor is specially designed for children with a variety of neurological and orthopaedic Natalie Davisconditions, to receive intensive rehabilitation in a friendly environment. The floor includes multiple tricycles and bikes for kids to ride as part of therapy, a classroom so kids can continue their studies while they recover, and multiple games including Nintendo Wii and a basketball hoop that help make therapy fun. The pediatric rehabilitation team focuses on making life in the hospital as normal as possible, and the presence of other children in similar situations provides companionship, support, encouragement and inspiration.

During her month-long stay on the unit, Natalie's therapists worked with her as she healed. She had to relearn things such as transferring from he bed to her chair because at first, she relied mainly on her wheelchair. As she began to regain strength in the muscles that were weakened as a result of having been surgically lengthened, she began to stand and take small, slow steps.

She also received care from specialized rehabilitation nurses each day. "Natalie is a very sweet, determined little girl," said Caryn Summerville, one of Natalie's nurses on the inpatient pediatric rehabilitation unit. "It's amazing to see the progress that patients make and the confidence gained throughout their stay at RIC."

Therapy goals also included regaining endurance, increasing mobility and range of motion, improving coordination and balance, and regulating her gait pattern, or the way her feet move to take steps. Malate reports that she was a model patient, willing to do anything to help achieve her goals and driven by the hope that one day soon she could play soccer, her favorite sport.

"When we asked her what her ultimate goal would be, she told us she wanted to play soccer, so that helped us design therapies that would get her to where she wanted to be," he said.

The Pediatric Lokomat® Advantage

In her quest to walk more easily and play soccer, Natalie was fortunate to have access to robot-assisted walking therapy on the Lokomat, a high-tech treadmill with an robotic frame attached by straps to the outside of the legs. It is designed to improve gait, or one's walking pattern, speed and endurance. The Lokomat controls the movement of the patient's hip and knee. The computer-

Natalie Davis works on the Lokomat during a session.

Natalie works on the Lokomat during a
session with physical therapist Michael
Klonowski

controlled format provides users with real-time visual feedback on their progress through a virtual-reality gaming interface that motivates the children and provides instruction through cartoon characters and games. The computer controls the pace and measures the body's response to the movement. Natalie, for instance, could see immediately if she was putting too much weight on one leg by watching a ninja or a cowboy walk across a computer screen.

When her steps began to falter or become weak, the robot sensed it and the virtual reality character would start to head for a tree. When she engaged more and improved her gait, the robot sensed it and headed for a gold coin — worth extra points. "It's quite the contraption," says her mother, Christine Davis. "Natalie really did enjoy using it, and we did see improved strength and endurance in her walking."

Without this state-of-the-art device, walking therapy requires two physical therapists to manually move the patient's legs while another therapist supports the patient's body. This type of manual therapy is very tiring for both the therapists and the patient and can only be sustained for about 10 minutes at a time. With the machine supporting the patient's weight and controlling the legs, therapy can be much more sustained, consistent — and effective.

RIC was the first hospital in the U.S. to obtain a Lokomat for adult patients when the federal Food and Drug Administration approved it in 2002; the pediatric version became available in early 2009, just in time for Natalie to reap its benefits. RIC researchers are now examining and tracking the effects of this therapy for both adults and children, and continue to participate in new research and clinical trials that provide more data on its effectiveness.

"RIC is committed to discovering new treatments that maximize the abilities of children with cerebral palsy," says Dr. Gaebler-Spira. "There is an immense need for research in this area, and RIC is dedicated to examining the vast opportunities and discovering new treatments that advance ability for those living with CP."

Before starting Lokomat therapy, Natalie was able to walk about 200 feet at a slow to moderate pace, taking a few breaks to rest. By the time her inpatient stay was over, she was able to walk up to 30 minutes on the Lokomat at a fairly quick pace of more than a mile an hour, reports Malate. "Our goal in Natalie's rehabilitation was to maintain the positive effects of her surgery for as long as possible," he says. "With the Lokomat, we found the perfect tool to help in that mission."

When asked what she would tell other kids who might be thinking about Lokomat therapy, Natalie said, "It's awesome! Its fun and it really will help."

In addition to Lokomat therapy three times a week, Natalie also participated in occupational therapy to work on fine motor skills and activities of daily living such as bathing and dressing, pool therapy and art therapy (her favorites, her mother reports); and group activities like cooking with other children on the unit. To keep up with school, she worked with a certified teacher each day through a special tutoring program between RIC and Chicago Public Schools .

"She is so much stronger," her mother reports. "Without even thinking about it, she will pick up her walker, hold it in the air and move it to where she wants it. Natalie's posture also has improved dramatically. "She is about two inches taller than she was before her surgery and therapy," says her mom. "She stands nice and tall."

And, for the first time in her life, she can kick a soccer ball. "We're really proud of her and the work she has put in to get where she is today," said her mother.

Natalie is now back at home in Plano with her parents, older sister and younger brother, where she is walking with much more strength and endurance. Today, Natalie is enjoying her summer including swimming, bicycling and playing with her family and friends. And there is a soccer program in nearby Oswego that Natalie's family is looking into so Natalie can achieve her goal of playing soccer.

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