A Premier Cerebral Palsy and Spasticity Program

More than a decade after its establishment, the Cerebral Palsy and Spasticity Program at Nicklaus Children’s Hospital has built a reputation as a preeminent destination for multidisciplinary care and leading-edge treatments. From a clinical setup that allows patients to see multiple specialists on the same day to a comprehensive array of therapies, such as single-event multilevel surgery, our program is pushing cerebral palsy and spasticity care forward so more patients can thrive.

Multidisciplinary Coordination for Centralized Care

For patients with cerebral palsy, the complexity of the disorder and related conditions typically necessitates evaluation and ongoing care by a neurologist, orthopedic surgeon, neurosurgeon, physiatrist and therapist, who may all be in different locations. Accessing this care can be difficult, especially for children who depend on a wheelchair for mobility or whose families struggle to secure transportation.

A collaboration between the Nicklaus Children’s Orthopedic, Sports Medicine and Spine Institute and Brain Institute, the Cerebral Palsy and Spasticity Program assembles key specialists in one clinic, thereby eliminating silos and centralizing care for patients and clinicians alike.

“All of us — orthopedic surgeon, neurologist, neurosurgeon, physiatrist and therapists — see patients within the same visit,” says Monica Payares-Lizano, MD, FAAOS, a pediatric orthopedic surgeon and Co-Director of the Cerebral Palsy and Spasticity Program at Nicklaus Children’s. “The clinicians then meet to discuss each child’s individual care plan. Sometimes we ask each other collectively, ‘should we try this medication first or this or that surgery first?’ These are the kinds of decisions we make together in real time. It’s the most efficient and effective form of care.”

With such a diverse group of specialists involved in care, our team offers the full range of therapies to help improve patients’ quality of life. In the neurological realm, these include Botox^® and Dysport^® injections to improve range of motion and manage localized spasticity. Various medications, including oral and intrathecal baclofen, can also help control spasticity. Our neurosurgical treatment options include dorsal rhizotomy, a spinal procedure that can reduce spasticity.

All-in-One Operation

One of the most complex orthopedic treatments we provide is single-event multilevel surgery. During one operation, the surgeon corrects deformities that affect patients’ ambulatory ability from hip to foot. Procedures range from simple tendon lengthening to complex hip reconstruction.

This is a significant change from how surgeons approached such deformities in the past.
“We used to see children who would have a typical progression or pattern of decompensation in their gait,” Dr. Payares-Lizano says. “Initially, they might start with ankle contractures, and we would perform surgery for that. The next year, we would see they were developing a different deformity that required another surgery. We referred to this as birthday syndrome because, every year, children would need another surgery. The way we approach these patients now, we want to see all the deformities at once and try to correct them in one surgery.”
Orthopedic surgeons can perform a variety of procedures as part of a single-event multilevel surgery, depending on patients’ age and ambulatory status, according to Dr. Payares-Lizano.

“One option is tendon lengthening at the hip to ensure it stays in place because, in many cases, patients can have hip dislocations,” she says. “We can also perform lengthening of the hamstring tendons, lengthening of the Achilles tendon or gastrocsoleus muscles, and derotation osteotomies.”

Hip reconstruction may be necessary for some patients in whom unopposed forces of certain muscle groups have displaced the bone from its normal position, Dr. Payares-Lizano says. Foot reconstruction may be appropriate for patients who have a cavovarus foot or flat foot deformities.

Soon, the Cerebral Palsy and Spasticity Program will include a gait analysis lab, which will enhance clinicians’ ability to determine the most appropriate treatment options, including surgery.

“The gait analysis lab will give us more objective data on what we can do in terms of planning surgery or other management options,” Dr. Payares-Lizano says. “This kind of analysis is increasingly becoming the standard of care for patients, but only one other gait analysis lab exists in Florida.”

Emphasizing Education and Ramping Up Research

For most of its existence, the Cerebral Palsy and Spasticity Program has prioritized clinician and community education to counter insufficient and outdated information about the management of cerebral palsy.
“Many people may think there’s nothing we can do to improve patients’ quality of life, but there are many options,” Dr. Payares-Lizano says. “There are things we can do to improve the way patients walk and stand. People think children with cerebral palsy can’t do a lot of things, but the reality is, this disorder is a spectrum. Someone with cerebral palsy may simply walk with a slight limp. What’s more, intellectual ability doesn’t necessarily have anything to do with patients’ ability to successfully navigate life. I have colleagues with cerebral palsy, and some of my patients have graduated from college.”

Our program is still heavily focused on enhancing education and access to care, but we’re also developing a research component. We’re starting by collecting patient-reported outcomes data.

“We see the difference our care makes for patients, and we hear about it from their parents,” Dr. Payares-Lizano says. “We want to be able to provide that information objectively and show the impact our surgeries and management are having.”

When thinking about her vision for the future of the Cerebral Palsy and Spasticity Program, Dr. Payares-Lizano reflects on an encounter she had with a mother at a community outreach event a few years ago.

“I talked about the program, and the mom came to me and said, ‘Where were you 20 years ago when I needed you for my daughter?’” Dr. Payares-Lizano says. “My personal commitment is to bring the gold standard of care to patients with cerebral palsy in South Florida, Latin America and the world.”

For more information about the Cerebral Palsy and Spasticity Program, email a physician liaison today.