According to the National Profile of Childhood Epilepsy and Seizure Disorder, CYE may have difficulties beyond seizures, seizure medications, and co-morbid conditions. The report suggests that CYE may be perceived as "different" by their peers as well as significantly less likely to receive care in a medical home, which leads to a higher risk of having unmet needs for care coordination, medical care, and mental health services. Further, this disparity likely coincides with findings that children and youth from racial and ethnic minorities, as well as lower income families, are disproportionately affected by epilepsy. It has been found that even when CYE screen positive for a behavioral health concern that a referral is made on 20% of the time, with stigma cited as the primary barrier for lack of follow-through.34
Sudden Unexpected Death from Epilepsy
SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP.38 This is the leading cause of death in people with uncontrolled seizures.
The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of victims do show evidence of a seizure close to the time of death while most, but not all, cases of SUDEP occur during or immediately after a seizure. The exact cause is not known, but possible factors include pauses in breathing as a result of a seizure, dangerous heart rhythm as a result of a seizure, or mixed causes of breathing problems and irregular heart rhythms. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm.38 More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
As of today, there is no way to prevent SUDEP other than by better controlling seizures. Therapies and seizure-management practices are common ways to control seizures.
Steps can be taken to avoid SUDEP:
The Danny Did Foundation offers many resources and materials on SUDEP for parents, caregivers, students, schools, and medical professionals