Parents of children with epilepsy will tell you: It’s one thing to manage a child’s seizures at home where you can keep an eye on them. It’s another when the kids head off to school. Parents often swap stories of the challenges they face.

One family worries that their daughter, who is ambulatory during her seizures, has wandered outside the school without a buddy. Another family is concerned about their child’s failing math grade. Recent changes in medication have affected their child’s memory and ability to concentrate.

A third copes with the social effects of their son’s epilepsy. His classmates were frightened and confused by a recent seizure and have been avoiding him. His parents are working with the school nurse to educate the children about seizure disorders and cultivate compassion and caring.

As many as 325,000 school-age children, ages 5-14, have epilepsy. Thankfully, with medication, surgery, a special diet or vagus nerve stimulation, most go to school and fully participate in school activities.

However, children who continue to have seizures may run into problems. Many of these problems can be overcome or prevented through appropriate management by an informed school staff, particularly the classroom teacher and school nurse.

It is important for parents and schools to work together to create a safe and supportive environment for students with seizures to grow, learn and achieve their full academic potential.

Meeting the Teacher

Parents should take the time to meet with their child’s teacher before the beginning of each school year to discuss what type(s) of seizures their child has, how to recognize them, how the teacher should respond to them and how the teacher can prepare the other students so that they understand and accept the child.

The Epilepsy Foundation offers several sample forms that can aid in this process. These include a questionnaire for parents to complete prior to meeting with the school, a student interview form, a seizure information sheet to provide teachers with basic information about a student’s seizures and medications and an anecdotal record form teachers can use when reporting a seizure and/or medication side effects. (For more information on these forms, seepage 11.)

Many parents find that they must meet with teachers and other school personnel more than once, either to update them when a child’s seizures and/or medications change, or to offer retraining when a school’s response to a seizure does not live up to expectations.

Because seizures can happen while the child is with a substitute teacher, some parents have found that it is helpful to create a laminated card listing the child’s current medications, seizure protocol and emergency contact numbers. Others rely on an “emergency backpack” containing a
blanket or towel to place under the child’s head, a change of clothing and a card with emergency first-aid instructions.