Karli, who was diagnosed with cerebral palsy in early childhood, presented with significant lower-extremity muscle tightness, spasticity and toe walking that affected her mobility. After undergoing multiple interventions over the years, her family sought evaluation at Children's Mercy's multidisciplinary spasticity clinic, where specialists from pediatric neurology, physical medicine and rehabilitation, and pediatric neurosurgery conducted a comprehensive assessment to determine the most appropriate next steps.

The clinic's collaborative model allows specialists to evaluate patients together in a single visit, facilitating shared clinical decision-making and development of individualized treatment plans. Karli's care team included Rose Gelineau-Morel, MD, pediatric neurologist; Sathya Vadivelu, DO, pediatric rehabilitation medicine physician; and Paige Haynes, MD, pediatric neurosurgeon. 

Following multidisciplinary evaluation, the team determined Karli was an appropriate candidate for selective dorsal rhizotomy, despite being older than the typical age range for the procedure. Providers cited her motivation, maturity and ability to participate fully in the rigorous postoperative rehabilitation process as key factors supporting candidacy. SDR is a neurosurgical procedure that reduces lower-extremity spasticity by selectively sectioning sensory nerve rootlets that contribute to abnormal muscle tone. 

The procedure was performed by pediatric neurosurgery in partnership with rehabilitation medicine specialists, who provided intraoperative monitoring to help identify appropriate nerve rootlets for treatment. Following surgery, Karli transitioned directly into Children's Mercy's inpatient rehabilitation program, allowing for early initiation of intensive therapy without delays in care. 

Postoperative rehabilitation included several weeks of inpatient therapy followed by a coordinated transition to outpatient rehabilitation services closer to home. This integrated approach supports continuity of care while enabling patients and families to remain connected to local support systems during recovery. 

Karli demonstrated strong engagement throughout rehabilitation and experienced meaningful functional gains following treatment. Within months of completing inpatient rehabilitation, she was participating in recreational activities including swimming, basketball and soccer and entered high school with improved walking ability and confidence in her mobility. 

For patients with cerebral palsy and persistent lower-extremity spasticity, comprehensive evaluation by a multidisciplinary movement disorders and spasticity team can help identify candidates who may benefit from advanced interventions such as SDR. Careful patient selection, coordinated surgical care and intensive rehabilitation remain critical to achieving optimal outcomes.

The funding is being used for their project, “ENTRY TRAC (Epilepsy and Neurology Transition Resources for Youth to Ready Adult Care)”. The goal is to create a patient- and family-centered transition program, strengthen the healthcare system's capacity to transition care effectively, and empower youth with epilepsy and special needs (YES) through a responsive feedback-driven improvement process.

As Drs. Abdelmoity and Le Pichon explain, transition of care (TOC) is the process by which youth are transitioned from pediatric to adult medicine. This process can be difficult for many youths and their families. This is especially true of those with complex medical needs, such as epilepsy and other special needs.

Epilepsy is one of the most common neurological disorders. Many of these children have special needs, including learning disabilities and other health issues. For these populations, TOC can be especially complex and traumatizing. While there are many organizations that assist with TOC, the process is fragmented, making it difficult for families to access care in a seamless and fluid way.

Drs. Abdelmoity, Le Pichon, and their team aim to develop a framework to support youth with epilepsy and special needs during TOC.

“Our goal is to create a framework that facilitates a smooth TOC process while addressing the diverse needs of both the youth and their families, encompassing medical, legal, societal, and emotional aspects,” said Drs. Abdelmoity and Le Pichon. “Acknowledging that many essential components are already in place but dispersed across various organizations at local, regional, and national levels, our proposed framework offers an integrated solution.”

It begins at the age of 13, marking the initiation of the transition process with a focus on education. This phase aims to equip youth and their families with the necessary knowledge and skills to navigate TOC effectively. Through tailored educational interventions, they will enhance their ability to articulate all needs, including diagnoses, medications, and social needs, thereby bolstering their self-efficacy. The legal learning skills will include applying for the least restrictive options for guardianship. Financial skills will address issues with medical insurance, employment, and other available governmental assistance. Societal skills target the ability to live independently.

“Affective skills are geared to prepare the family to enter the adult world, often requiring letting go of strong emotional bonds,” Drs. Abdelmoity and Le Pichon explain.

The second phase of the project involves implementation, taking place between the ages of 17 and 21, marking the actual physical transition to adult care. This crucial step hinges on a “warm hand-off,” ensuring a seamless transfer by facilitating at least one joint visit with both pediatric and adult providers present.

The final stage of the proposal focuses on ensuring sustainability. The overarching aim of establishing this framework is to create a model easily adaptable to other diseases and healthcare institutions. For widespread adoption, it is imperative to demonstrate its benefits for all stakeholders, including youth and their families, healthcare providers, and the medical system as a whole.

Additionally, it must be proven to be financially viable.

“This project has been meticulously designed with measures in place to objectively demonstrate the benefits across all affected levels. We aim to illustrate that implementing this TOC framework will not only benefit youth and their families but also enhance medical care in a fiscally responsible manner, ultimately contributing to the betterment of society as a whole,” said Drs Abdelmoity and Le Pichon.

Other team members on this project include Douglas Blowey, MD, Nephrology; Timothy Corden, MD, Research Learning Center; Emily Cramer, PhD, Health Services & Outcomes Research; Amanda Deacy, PhD, Gastroenterology; Erin Fecske, DNP, APRN, Neurology; Paul Glasier, PhD, Neurology; Luke Harris, MBA, Integrated Care Solutions; Stephanie Horton, Neurology; Gina Jones, DO, Neurology; Kadriye Lewis, Ed.D, Graduate Medical Education; Stephanie Pratt, LMSW, Social Work; Emily Thorpe, M.Ed., Office for Community Impact.

Please join us in congratulating Drs. Abdelmoity, Le Pichon, and their team!