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Redefining Cerebral Palsy Care

The comforts of home at La Rabida Children's Hospital in Chicago.

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For Molly Swenson, PT, working on La Rabida Children's Hospital's rehab team, treating kids who are part of the hospital's medical home programs affords her an entirely different perspective on everyday aches and pains.

"The kids we serve are just so happy and don't realize anything's wrong with them," she said. "Adults complain about joint pain and their outlook is so different than kids with a chronic illness. It makes me so grateful for my good health."

The cerebral palsy medical home program is located within La Rabida's new outpatient center, which just opened last spring. It's little wonder that many of the children have such happy dispositions. Floor-to-ceiling windows with sprawling Lake Michigan views set the backdrop and bright, kid-friendly décor dominates. While waiting for appointments, kids play on iPads or watch Disney shows on flat-screen TVs.

The cerebral palsy clinic is the only location in Chicago with both a primary care physician and cerebral palsy specialists collaborating on a treatment plan. Each patient also has access to nursing care coordinators, social workers, a physiatrist and dietician. As an added parent perk, normally functioning siblings can also schedule well visits with the pediatrician.

But it's the physical therapists who probably spend the bulk of the time with patients in the clinic, who are usually diagnosed in the second year of life and remain in the program until they reach adulthood. PTs help patients with cerebral palsy develop coordination, improve balance, build strength, maintain flexibility, and cultivate independence.

Lauren O'Rourke, PT, was herself a patient in a La Rabida pediatric clinic for an autoimmune disease, and chose the field because of the rapport with her PT. "I was going back and forth about becoming a pediatric rheumatologist or a physical therapist," she recalled. "I enjoyed the amount of time I was able to spend with my PT. The doctor spent as much time as she could with me, but I developed a relationship with my physical therapist."

Casting Clinic

Nowhere is the therapist-patient bond more evident than within the casting clinic. It's one of only two casting clinics in Chicago, and approximately six outpatients per week are fitted with casts. O'Rourke and Swenson are part of the team of PTs that help cast pediatric inpatients, most of whom have tight extremities because of traumatic brain injuries.

In the serial casting clinic, children wear casts because they're lacking range of motion in their ankles, knees or both. A series of casts slowly stretches their tight muscles. Most of the children with cerebral palsy are classified as having spastic cerebral palsy, which is caused by lesions on the cerebral cortex at birth, a stroke, or other complication during birth
or prematurity.

A smaller number, approximately 10% of patients in the casting clinic, have sensory issues or idiopathic toe walking. Casts can re-train muscles to promote flat-foot walking, which is often an issue when children are diagnosed with autism, sensory processing, or other sensory disorders.

The trick to effective cast fitting is dedicating two to three people to the task.

"The two of us work together with a rehabilitation aide helping," said Swenson. "That way, we can each work on one section of the foot. I might work in the forefoot and Lauren will care for the hindfoot, while a rehabilitation aide will do the wrapping. That way, we can save the arch and make sure the foot is properly aligned."

If only one person is performing casting, the patient can end up with "rocker bottom," since the therapist may just be pulling the foot down, instead of seeking a range of motion from the correct part of the ankle joint.

The therapists said they've fitted a 3-month-old who was diagnosed with club foot with a cast up, as well as patients approaching their 21st birthday. "The younger the patients are, the quicker and easier it generally is for them to achieve the correct range of motion," noted Swenson.

In the case of idiopathic toe walkers, they generally wait until age 5 before taking action. "By age 5, 50% of toe walkers will start walking with their heels down, but the other half will not," explained Swenson. "We have good success with the casts. The toe walkers who are casted spend about a month in casts, and then move into braces to block the ability to go up on their toes. They walk in braces during the day and then sleep in ankle night splints for stretching."

The children with cerebral palsy or brain injuries wear casts for a week at a time. The quickest turnaround time O'Rourke and Swenson recalled was 3 consecutive weeks, and the longest was 5 months.

Casts go on painlessly so the biggest struggle -- and commitment on the part of the parents - is keeping the cast dry. Sponge or bed baths are necessary if children are too young to understand to keep their feet dry in the bath.

Despite the inconvenience, there's a waiting list for kids who want to be casted over the summer.

"Many of these kids feel bullied at school, and already stand out from their classmates," said O'Rourke.

Summer is also a good time to concentrate on the work of re-training muscles. Casting is only the first step. Once it's applied, therapists can begin walking children on their feet and start making headway on the goal of standing or standing assisted three hours per day.

"If the kids are ambulatory, we encourage them to try the stairs," said Swenson. "The more they stand, move and put weight on the heels, the faster the process goes. We act like we aren't doing anything, and all the credit goes to their hard work."

Removing the cast is often the hardest part, because of the loud noise and saw. The payoff to the team approach in the casting clinic is far less traumatized kids.

"We sing, let the kids choose a DVD or play with the iPad," said Swenson. "It's helpful to have us all in the room so we can distract them during the 'scary' parts."

Standing Group

After casting, many patients transition to a standing group, which encompasses mostly children with cerebral palsy. The only requirement for this PT-led group is that the children can stand independently or with assistance.

Therapists spend an hour on therapeutic strengthening and standing exercises for pre-walkers or those with poor alignment. Caregivers participate as well, and learn the techniques for practicing at home.

"A lot of kids with cerebral palsy stand with their center of mass forward, leaning inward and putting weight on the toes," shared Swenson. "We retrain the child and parents on getting the center of mass back so their weight line drops through their heels, rather than toes."

PTs teach parents to encourage children to play video games or watch TV in the position of a baseball outfielder, squatting with knees bent and hips back.

Collaboration Beyond CP Clinic

The PTs' relationships with parents extend far beyond teaching a few home exercises. Because the entire interdisciplinary team meets about each child's case frequently, parents can get accurate answers from anyone on the clinical team.

"In one clinic appointment, the kids can see a physical therapist, nutritionist, physiatrist, social worker and primary care physician, because of our medical home," reasoned Swenson. "In the community, it would be a five-appointment process at different locations, and referrals would be needed for all of them."

La Rabida also hosts equipment clinics with PTs, OTs and equipment vendors. In the equipment clinic, children with cerebral palsy are evaluated for wheelchairs, bath seats, gait trainers and standers. The equipment is adapted to promote the highest level of independence, and the clinics take care of delivery and fitting into the home, letters of medical need, repairs, and adjustments every 6 months for growth.

PTs and other members of the interdisciplinary team also collaborate with schools to ensure seamless rehabilitation when outside the La Rabida setting.

"We communicate with school therapists, and make sure they understand how the casting program works and our goals," noted Swenson.

When children are ready to move into a bigger group setting, funds from the La Rabida Foundation allow for scholarships to private sports camps if it will help them continue working on rehabilitative goals.

At age 16, children can participate in a four-session transitional group to learn the specifics of transitioning to adult care. Sadly, there's no such medical home in the adult cerebral palsy realm.

"The medical community has not caught up with the needs of babies who wouldn't have been saved a generation ago," said Pam Northrop, LCSW, medical home program manager.

Graduates of La Rabida's cerebral palsy clinic are luckier than most of their counterparts. With a strong clinical foundation and all the comforts of home achieved in the CP clinic, they may be the best positioned to navigate the changing healthcare environment of their generation.

Robin Hocevar is on staff at ADVANCE. Contact: rhocevar@advanceweb.com.

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Photos from LaRabida

Up-close photos of the La Rabida therapists in action.

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