Rationale: Children with epilepsy have an increased burden of cognitive, behavioral, and psychiatric disorders and have poorer school achievement and performance even when their epilepsy is of presumed genetic or unknown etiology (i.e. absence of mental retardation, normal neurological exam, no underlying structural or metabolic neurological condition or insult).Special education is a crude marker for a heterogeneous group of disorders that can interfere with school performance.The purpose of this study was to assess if the use of special education services was associated with epilepsy among cases of presumed genetic or unknown etiology.
Methods: Data came from the Connecticut Study of Epilepsy of 613 children with newly diagnosed epilepsy (cases) prospectively identified by pediatric neurologists from 1993 to 1997.Our analysis is based on a parent interview conducted 8-9 years after each child was first diagnosed with epilepsy.Sibling controls were recruited in order to control for social environment, parent education, school district, access to educational diagnoses, medical care, and sensitivity of physicians diagnoses.We restricted the analysis to 217 cases of presumed genetic or unknown etiology and their 217 sibling controls.Cases and sibling controls were compared using the Chi-squared test or the Fisher s exact test, and logistic regression.
Results: Mean age at the time of the interview was 15.3 for cases (SD 4) and 15.7 for controls (SD 5).Based upon parent report, cases were more likely than the sibling controls to have ever repeated a grade (OR=2.1, 95% CI=1.2-3.6) and ever received special education services (OR=4.0, 95% CI=2.6-6.2).Among those who ever repeated a grade, 31 (73.81%) cases and 14 (63.64%) controls were held back between kinder-garden and second grade.Among cases who had ever received services, for 32 (29.09%) services were initiated before their first seizure.This was true for 7 (12.73%) cases with an age of onset <5 years, 19 (44.19%) if age of onset 5-9 years, and 6 (50%) if age of onset >10 years.Among cases, the odds of ever receiving one special education service was three-fold higher than the controls (95% CI =1.7-5.3) and the odds of ever receiving two or more special education services was five-fold higher than the controls (95% CI=2.8-7.8).Cases were also more likely still to be receiving services at the nine-year interview compared to controls (OR=3.4,95% CI=1.7-6.9).
Conclusions: Our analysis suggests that the use of special education services is associated with childhood-onset epilepsy even if the children appear neurologically otherwise normal.Many services were initiated before epilepsy onset, and more services were provided to children with epilepsy than to their siblings.These findings suggest that even in children with presumed genetic or unknown etiology, subtle deficits exist.Medical providers who care for children with newly diagnosed seizures should be responsive to the special educational needs of such children not only at the time of diagnosis but over their school years as well.
Funded by: NIH-NINDS R37-NS31146.