In the U.S., approximately one in every 300 children is born with cerebral palsy (CP), the most common cause of movement and mobility disabilities in children. CP is an umbrella diagnosis for a wide range of neuromuscular disorders affecting movement, muscle tone, balance and coordination – with wide-ranging effects, from mild gross-motor delays or difficulty, to complete disability requiring total care.
Each year, Shriners Hospitals for Children cares for thousands of children with CP. Here are examples of the innovative treatments improving our patients’ lives.
Shriners Hospitals for Children is an internationally recognized leader in clinical motion analysis, available at 14 of our locations. In the motion analysis centers, high-speed cameras, reflective markers, force platforms and muscle sensors work together to record and measure how a child with a mobility impairment moves. The technology of the motion analysis centers provides a way to collect detailed data that helps to give a more complete picture of how and why a patient’s muscles, joints and bones are interacting.
“At Shriners Hospitals for Children, care decisions for children with cerebral palsy are often driven by the analysis of objective, quantitative data, including information provided by the motion analysis centers,” said Jon Davids, M.D., assistant chief of orthopaedics and director of the Cerebral Palsy Center of Excellence at Shriners Hospitals for Children — Northern California. The information is used to guide clinical decisions and develop treatment protocols, which ultimately leads to improvements in patient outcomes.
Aidan, who has a milder form of diplegic (affecting the legs) CP, rides a bike to his suburban Chicago high school, even in the winter. He doesn’t let snow or rain alter his plans and wears ankle foot orthoses (AFOs) on both legs when he’s on his bike and in school. “If I’m not at home I’m wearing them. If I didn’t wear braces, I wouldn’t have muscle control in my ankles. I wouldn’t be able to walk long distances,” said Aidan.
Aidan’s active lifestyle makes traditional braces a challenge. His mom, Ann, said Aidan would break braces frequently as a child while receiving care at another hospital. After Aidan was 5, Ann felt his care wasn’t showing progress. The family found the care they were looking for at Shriners Hospitals for Children — Chicago, where Aidan has received a series of customized – or tuned – AFOs throughout a large growth spurt. “The Shriners Hospitals team really listens to Aidan talk about the expectations he has because he is highly active among kids that wear braces,” said Ann.
Aidan’s braces are fitted by Nancy Scullion, PT, MPT, PCS, a senior physical therapist who has been treating children with CP at Shriners Hospitals for more than two decades.
Scullion is researching the benefits of tuned bracing in children with CP who may have atypical gait patterns or challenges with standard brace prescriptions. “Typical bracing forces the foot to stay in a ‘neutral’ alignment while sacrificing range of motion from other structures that support the foot, ankle and knee joints,” Scullion said. “Tuned orthotics accept range of motion limitations at the ankle but accommodate and improve ground reaction forces at the knee and hip.”
Cerebral Palsy Treatments at Shriners Hospitals
Shriners Hospitals for Children offers a comprehensive range of treatments for children with CP, available at most of our orthopedic locations, including:
- Orthotic and other assistive devices to help maintain body alignment and provide stability in walking
- Serial casting and Botox injections to relax muscle tone and facilitate needed stretching
- Appropriate wheelchairs when patients need them
- Physical and occupational therapy
- Various orthopaedic and neurosurgical interventions
In an initial small study funded by Shriners Hospitals, researchers will conduct instrumented three-dimensional gait analysis in the motion analysis center on patients wearing their traditional AFOs. Then, they will receive a customized, tuned brace to use for one month, after which a second gait analysis will be conducted. Researchers hope the customized, tuned AFO will show a more normalized walking pattern. Based on early results, Scullion expects further benefits: “Tuned bracing can improve joint mechanics in the knees during walking; a frequent area of dysfunction in children with diplegic CP. Also, custom bracing can increase step and stride lengths in ambulatory children with CP. Additionally, tuned-brace wearers have reported improved standing balance compared to barefoot or traditional bracing.”
Patients with CP may require multiple surgical procedures to correct all their gait deviations (walking and standing). Prior to the use of computerized motion analysis, a series of single-level surgeries was the standard of care for these children. The frequent surgeries were stressful for the patients and families, and often, the outcomes were less than optimal due to the inability to quantify and objectively evaluate the child’s multilevel gait abnormalities.
Today, gait deviations are often corrected with one surgery, known as single event multilevel surgery (SEMLS), which is now considered to be the standard of care for improving gait and function in ambulatory children with CP. Jane Wick, perioperative nurse at Shriners Hospitals for Children — Portland, explains the advantages of this procedure: “The benefits are immense. SEMLS includes a single anesthetic, less casting, earlier mobilization, faster recovery and a shorter rehabilitative period.”
Follow-up examination and gait analysis allow the members of the clinical team to evaluate the functional outcomes of SEMLS and provide a plan for maintenance or continued improvement, which may include continued physical or occupational therapy or bracing. “The largest benefit of SEMLS is increasing both the functionality and quality of life for our patients with cerebral palsy,” said Wick.
A designated center
Shriners Hospitals for Children takes pride in offering multidisciplinary care in one location, making obtaining complete and quality care for their children much easier for parents and guardians.
Our Northern California location has established the Cerebral Palsy Center of Excellence for its patients with CP. Here, patients benefit from a comprehensive care program including motion analysis, spasticity management, complex surgical procedures, integrated orthotic management and rehabilitation. Patients also benefit from clinical trials and research led by physicians and scientists determined to improve outcomes for this patient population.
For example, many children with CP may develop hip dysplasia, in which the socket of the hip joint doesn’t fully cover the ball portion of the upper thighbone, so the hip joint can become partially or completely dislocated. Hip dysplasia limits range of motion and is a common cause of pain for these patients. Surgery can help restore mobility and prevent pain later in life. “Earlier surgeries are more successful and can eliminate the need for complex surgery typically used in treating those diagnosed with hip dysplasia as teens,” said Dr. Davids. “Previously, doctors waited until the hip dysplasia was painful before offering treatment, but now we know that earlier diagnosis and treatment leads to better outcomes.”
Shriners Hospitals for Children — Northern California has partnered with other key regional pediatric orthopaedic providers to improve detection, preserve function and reduce pain for patients.
“At Shriners Hospitals for Children, we are committed to maximizing our patients’ function and quality of life through objective analysis and appropriate proactive care,” said Dr. Davids.