Abstracts

Infantile spasms, an epileptic syndrome, typically manifests within the first year of life. The condition is characterized by brief episodes of neck flexion and arm extension, which can closely resemble normal neonatal movements. This similarity often complicates the differentiation of infantile spasms from typical neonatal behavior, leading to delays in medical consultation and diagnoses. Such delays have been associated with an increased risk of cognitive and developmental impairments. Despite this, there is limited research on health outcomes in institutions that have not yet adopted a standardized treatment protocol for infantile spasms. Nemours Children’s Hospital in Orlando, FL presents a unique opportunity to assess whether an ad hoc treatment approach is more effective or inferior.

This study will evaluate health outcomes for patients receiving ad hoc treatment for infantile spasms at Nemours Children’s Hospital and compare these outcomes with expected national averages. The health outcomes assessed will include the percentage of patients progressing to intractable spasms, the percentage of patients developing other types of epilepsy, and the duration from treatment initiation to spasm freedom. This retrospective chart review will encompass data from Nemours Children’s Hospital and its outpatient pediatric neurology clinic, covering cases of infantile spasms from 2013 to 2023. Clinical data will be analyzed in comparison with expected outcomes reported in the existing literature on infantile spasms.

In this study encompassing 90 cases, 50% of the patients achieved spasm freedom, with a mean duration of 85.6 days from the initiation of treatment to the cessation of spasms. Three outliers, whose durations ranged from 2,000 to 3,000 days, were removed. Additionally, 65.6% of patients subsequently developed other forms of epilepsy, whereas only 24.4% managed to attain spasm freedom without progressing to other epileptic syndromes. This rate is notably lower compared to those found in existing literature. The average interval from symptom onset to diagnosis and therefor treatment was 98.6 days, with high dose steroids being the most common first line treatment chosen.  This prolonged delay in treatment initiation may be a significant factor contributing to the observed lower rates of spasm freedom and the increased incidence of other epilepsies in this cohort.

The findings of this study indicate a less favorable prognosis for patients managed with an ad hoc treatment approach, as evidenced by extended time to achieve spasm freedom and a higher incidence of subsequent epileptic disorders compared to national averages and existing literature on infantile spasms. These results underscore the potential advantages of implementing a standardized treatment protocol for infantile spasms. Moreover, the study provides a foundation for future research, particularly if such a standardized protocol is adopted by Nemours Children’s Hospital in Orlando.