It is estimated that one out of every 100 students has epilepsy and that 75% of all cases are diagnosed during adolescence (Plan for Nationwide Action on Epilepsy, Vol. 1. U.S. Department of Health, Education and Welfare). Although epilepsy is not a disease, nor a mental disorder, it is a chronic health disorder caused by temporary disruptions of electrical impulses in the brain that result in seizures. There are many types of seizures, from staring spells to tonic-clonic, which frequently involve convulsive movements and loss of consciousness. 

However, this article’s intent is not to focus on what epilepsy is, nor how it is treated. My goal is to discuss the increasing role of the school nurse and others in how best to handle the increasing number of students diagnosed with a seizure disorder. This is of particular importance when the student’s private prescribing physician specifies the use of the DIASTAT to be administered at the time or soon after a student experiences a seizure.

This discussion is near to me because I work at The Children’s Institute in New Jersey, a private school for students on the autistic spectrum, and we’ve witnessed an unfortunate trend in the comorbidity of autistic spectrum disorder (ASD) and epilepsy. Autism Speaks reports that as many as 1/3 of individuals with ASD also have epilepsy, proposing that some experts believe that brain abnormalities associated with ASD contribute to seizures.

Working with an ASD population, I cannot help but agree. The number of ASD students I work with who also have a seizure disorder has greatly increased since my inception as a school nurse in 1997. As a result, the number of Individual Healthcare Plans for my population has also soared. With an ASD and seizure disorder diagnosis, a student healthcare plan will often come with the prescription for the use of DIASTAT, which is a rectally administered medication used to treat “acute repetitive seizures” and “breakthrough seizures.” This medication is not a daily medication and is only to be administered according to the physician’s authorization (immediately for some or several minutes after for others). 

In New Jersey, only a licensed Registered Nurse can administer this medication. No one else, whether they’ve been trained or not, is allowed to administer the drug. Some states, including California, Connecticut, Delaware, and Alabama, allow the school nurse to delegate the administration of DIASTAT to other personnel. However, not all states do, and it’s essential that you be aware of your state’s legislation on DIASTAT administration.

At my school, I may have as many as eight to ten prescribed DIASTATS at one time – and my school contains only 110 students total!  We provide as many outside experiences as possible given the nature of our population. We have frequent field trips, community-based instruction activities several times a week, after-school programs, and respites, to name a few. These adjunct programs are in an effort to best serve this population in optimal learning experiences.

New Jersey law dictates that each student who is prescribed DIASTAT have a nurse accompanying them on all trips and activities that are school-sponsored. You can imagine with as many prescribed DIASTATs as we have, and the numerous off-campus outings, this is very difficult. But our school isn’t the only one with this issue. A school nurse shortage contributes to the problem. Schools, including mine, are responsible for securing an outside nurse for these situations if there aren’t enough school nurses at the school. This process is difficult and time consuming, forcing schools to utilize Nursing Agencies, which is expensive and does not often supply a Certified School Nurse. It is sometimes impossible for the school/district to provide what is required by law, and as a result, students miss out on opportunities. This can be very frustrating, because as a school nurse, I’m tasked with caring for the student, but part of caring for the student is ensuring they can participate in activities to enhance their learning and life experiences. But, I can’t be in ten places at once. So how do we best handle these types of situations when they arise?

How do you and your school overcome these challenges? Feel free to let me know in the comments section below!

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About the author

Pamela Barnes, RN, CSN-NJ, M.Ed is the School Nurse and Health Educator at The Children’s Institute in Verona, NJ, and has over 18 years of school nursing experience.