Regaining Confidence

Specialized spinal cord injury rehab helps pediatric patients shine

In just seconds, life can change completely. Spinal cord injuries can happen in an instant, yet their effects live on long after the moment of impact.

As pediatric physical therapists know, treating children and teenagers with any condition requires different considerations than treating adult patients. That is especially evident when dealing with comprehensive injuries, like SCI.

Shriners Hospitals for Children established some of the first rehab programs specifically for pediatric spinal cord injury patients. The physical therapists at Shriners Hospitals for Children-Philadelphia and Shriners Hospitals for Children-Chicago and the West Coast location of Shriners Hospital for Children-Northern California are on the forefront of helping these patients regain strength, mobility, and ultimately, their independence.

How They Happen

Motor vehicle accidents are the most common cause of spinal cord injuries - not just among the patients at Shriners Hospital, but among the population as a whole. Sporting accidents, such as skiing and ATV accidents, and diving into too-shallow pools, also cause injury. Gunshot wounds are another culprit. Non-traumatic spinal cord injuries can develop from other factors, such as spinal tumors, arteriovenous malformations, and birth-related complications.

"We need to be mindful that children continue to grow," said Kim Scharff, PT, DPT, PCS, physical therapist, Shriners Hospitals for Children-Philadelphia.

She added, "I came to Shriners because the mission was a good fit for me." Although Scharff continues to work with patients with many diagnoses, she now works most frequently with the spinal cord injury team.

As they grow up, SCI patients will face continued orthopedic difficulties that don't affect typically developing adults. They are prone to hip dislocation and scoliosis. The youngest patients have been in wheelchairs for so long that it's hard to avoid hip flexor contractures. Stretching the muscles as much as possible and getting the kids into standers as soon as possible are among the first lines of defense.

Wounds are another secondary complication of spinal cord injury. Pressure mapping and cushion adjustment can help prevent them. Since patients might not have sensation, it can be difficult for them to know when a new wound has developed. Physical therapists and the wound team must remain vigilant in monitoring.

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A New Normal

Patients at Shriners Hospitals spend anywhere from four weeks to several months in acute inpatient rehabilitation. During that time, "The biggest overall goal is teaching the child to return to a normal life in this new body," said Dana R. Johnson, PT, DPT, Shriners Hospitals for Children-Philadelphia.

"I started here as a student," Johnson explained. "My clinical supervisor was in charge of the spinal cord program and it piqued my interest." After working elsewhere for a few years, Johnson returned to Shriners Hospital.

"We want them to be as independent as possible," noted Maggie LaFever, PT, Shriners Hospitals for Children-Chicago. One goal of rehab is to get the patients to be on par developmentally - or as close as possible - with their peers. LaFever has worked with SCI patients since she started at the hospital. She said, "I'm really glad this is what I'm doing."

For many patients their new life includes a wheelchair. "We want to give the child as much mobility as possible," said Scharff. Getting a chair that can grow with the child is important, as on average, insurance companies reimburse for new chairs every five to seven years. Physical therapists will work on sitting balance, transfers in and out of the chair, and transfers from supine to seated position.

Patients practice negotiating the environment in their chair. Clinicians can attach a device to manual wheelchairs to measure the ergonomics of how patients push and whether they are positioned properly. In the motion analysis lab at Chicago, "We look at wheelchair propulsion and technique and hopefully prevent shoulder injury," said Lisa Placzkowski, PT.

Placzkowski also completed a clinical rotation at Shriners Hospital. "I had the opportunity to work with the pediatric spinal cord injury population and loved the setting here at Shriners," she explained. She worked in other places for a few years, and then, like Johnson in Philadelphia, she returned to the SCI rehabilitation program.

High-tech Rehab

A major goal of physical therapy is to get children the cardiovascular exercise they couldn't otherwise achieve. At Chicago, they emphasize a standing program for two hours per day. Functional electrical stimulation maintains muscle bulk. Depending on the severity of the injury, patients will practice walking with assistive devices.

Technology is a crucial part of helping these kids get mobile. The clinicians in Chicago use the Lokomat and other forms of locomotor training with the goal of improving the child's mobility. They want to "tap into the motor system and see if we can get some connections going," explained LaFever. Patients should be at least 4 years old to use the Lokomat or similar devices.

Bodyweight-supported treadmills are part of the treatment regimen at both locations. Manual treadmill training is used with smaller children or if a facility doesn't have the robotic systems. Foot-drop aids help them walk by stimulating nerves in local extremities. All of these technologies are reserved for patients with incomplete spinal cord injuries, as some lower-limb mobility is needed.

Outside of their hospital room, the patients at Chicago can recapture some of the joys of being a kid with activity-based rehab and adaptive sports. "Recreation therapy is a big part of our program, helping them do things they didn't think they could," said LaFever. Recreation Therapy/Child Life programs take patients on field trips to participate in activities such as adaptive SCUBA diving, and in-house, sports such as wheelchair basketball are part of the rehab experience.

Beyond getting their frustrations out on the basketball court, the programs afford the kids other coping strategies. Alumni patients return to the Chicago campus to serve as mentors. "Especially with social media, families have good connections," said LaFever.

In Philadelphia, a staff psychologist meets each week with the patient and his family, and more frequently if necessary. A support group for adolescent patients helps them connect with other patients their own age. The social service department leads monthly support groups for caregivers and child-life specialists meet with siblings to help them understand.

The Good of the Child

The rec life department is one of many that work together for the good of the child. Scharff explained, "We have a comprehensive inpatient care team that includes a physiatrist, nursing staff, psychologist, occupational therapy, speech therapy, rec therapy, child life, and discharge planning." Music therapy and art therapy round out the professional repertoire.

Physical therapy, occupational therapy and speech therapy will co-treat patients with higher-level injuries. In daily rounds, each discipline is represented by one team member, who later shares patient updates with the rest of the staff. Weekly meetings with the entire team cover each child's plan of care, limitations, goals, and discharge plan. "Each plan is developed according to the individual's needs," said Johnson.

Perhaps the biggest piece of the puzzle is the family. All patients strive for the ultimate goal - to return home. Yet, they will still need assistance - the level of care dependent on the severity of their SCI. The therapists encourage the family to work with the child.

"We practice family-centered care. The family is involved from the beginning in creating the goals they want to meet," noted Scharff. Goal conferences early in the child's stay educate parents and other caregivers. Caregivers attend formal meetings with the care team so they understand what needs to be accomplished before the child can be discharged. "Parents are integrated into therapy sessions to practice the necessary skills required for a smooth transition to home," Placzkowski said.

And their rehab doesn't stop once they pass the acute phase. "As children grow, they have different needs," said Scharff. For example, a 2-year-old might not be able to transfer herself, but as she ages, she will need to learn that skill.

Patients are followed by the system until they're 21 years old and are screened at regular intervals for additional physical therapy needs. "It is really amazing to see our patients grow and change over the years," noted Placzkowski. At Chicago, they return every 6 months to be reevaluated by all disciplines - more often if medically necessary. At Philadelphia, the team follows patients every three months to every year, with younger patients coming in more frequently.

Both hospitals, along with the third Shriners Hospitals for Children pediatric SCI program in Sacramento, are strategically located to be accessible to people from all over the country. Additionally, patients and families from outside the United States will seek treatment. Patients local to the Chicago and Philadelphia areas will return for weekly outpatient SCI therapy. Out-of-town patients will be referred to clinics closer to home for weekly rehabilitation.

Specialized Education

For physical therapists interested in working with this specialized population, Placzkowski and LaFever recommended continuing education programs to refresh what they might have forgotten from their PT school days. Shriners Hospitals for Children-Chicago, for example, holds a yearly Pediatric SCI Symposium.

Johnson recommended volunteering or shadowing in a spinal cord injury rehab program to determine whether it's truly the right fit for your career. "You need to be invested 100 percent for the benefit of the patient and the families," she said.

That investment of time and energy will pay off. All the physical therapists would probably agree with LaFever when she said, "The best part is helping them realize their potential and what they can achieve." 

Danielle Bullen is on staff at ADVANCE. Contact: dbullen@advanceweb.com

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