The ketogenic diet (KD) is a critical treatment for children with drug-resistant epilepsy and other neurological disorders.1 For children with feeding difficulties, the diet is often administered via a gastrostomy tube (G-tube).2 In schools, the school nurse is responsible for managing G-tube feedings.3,4,5 School nurses face considerable challenges compared to their hospital-based counterparts when administering prescribed KD and other diets via tube feeding.6 They must trust the safety of G-tube formulations provided by the child’s parents, especially for complex dietary regimens like KD or refuse to administer the home-prepared formulary provided by the parent to the child at school. School nurses have been trained and are responsible for following medical orders according to the “five rights” (the right patient, right drug, right dose, right route, right time to avoid medical errors).7 They cannot guarantee the accuracy or safety of the prepared formulations by parents, and without adequate legal protections, they risk facing legal consequences if complications arise from administering the parent-prepared preparations.8,9 This dilemma places school nurses in a precarious position: they must either trust family-provided formulas and risk complications that could harm the child and cost nurses their license or refuse to administer feeds, jeopardizing the student’s health and their employment.
Neurosurgeons, as specialists in managing neurological disorders like epilepsy, have a unique role in advocating for national reforms. The students under the care of school nurses are often the same patients that neurosurgeons treat in clinical settings, underscoring their shared responsibility for the health of these children. By pushing for standardized protocols and legal protections for school nurses, neurosurgeons can ensure that students with complex medical needs receive safe, uninterrupted care during school hours.
Moreover, the current lack of standardization across schools in the U.S. means that even when protections exist for nurses at a particular institution, they are often limited to the state, district, or town level.10 This fragmented system creates confusion and makes it difficult for nurses to keep track of differing policies, particularly when they change jobs move to new districts or states, further complicating their ability to consistently fulfill their duties.
The Growing Use of G-Tubes in Neurological Care
G-tube use has grown significantly since 1998, particularly among children with epilepsy, cerebral palsy and metabolic disorders.2 For those on KD, strict adherence to prescribed nutrient levels is essential for seizure management.1 A study on pediatric patients undergoing general anesthesia while on KD found that, while the diet is effective, careful management is required to prevent metabolic complications.11 These findings underscore the importance of precise protocols. School nurses may lack the resources associated with tube feeding complications, unlike their hospital nurse colleagues, who provide tube feedings in the hospital setting with established protocols.
In the absence of clear guidelines, school nurses may struggle to maintain sterile conditions, administer the correct formula and manage complications like blockages or infections.12 The lack of legal protections exacerbates these challenges. Cedar Rapids v. Garret F. established that schools must provide health services for medically fragile students,13 but it lacks specific guidance for the administration of complex, parent-provided G-tube formulations. Neurosurgeons can advocate for clearer national policies that protect nurses, ensuring they can safely administer feeds without fear of legal repercussions.
Legal Disparities and the Need for Standardized Protocols
School nurses lack the same legal safeguards when administering physician-prescribed G-tube feeds. This is particularly alarming given the risks associated with KD. Severe complications, including ketoacidosis, have been documented even in non-diabetic patients on the diet,14 highlighting the critical need for vigilant care. Without standardized protocols, school nurses must make judgment calls that could have serious consequences.15 One study found that strict monitoring of medications for pediatric KD patients is essential in maintaining ketosis.16 This model could serve as the basis for creating G-tube feed protocols that nurses can safely follow.
Neurosurgeons can collaborate with neurologists, dietitians and case managers to create such standards for G-tube feedings to be administered at school. As novel ketogenic diets like the modified Atkins diet are introduced, updated protocols are necessary to reflect the growing complexity of dietary management.17 A multidisciplinary approach led by neurosurgeons is essential to bridge the gap between clinical and school-based care.18
Addressing the School Nurse Shortage
The shortage of school nurses nationwide only exacerbates this issue.19 Only 40% of U.S. public schools employ full-time nurses, while 25% have no nurse on staff at all.20 This shortage is especially acute in underserved districts where students with complex medical needs often go without adequate care. Neurosurgeons can support legislation such as the Nurses for Under-Resourced Schools Everywhere Act which aims to increase funding for school nursing positions in low-income areas.21
Additionally, neurosurgeons should push for enhanced training programs that equip school nurses with the skills needed to manage children on KD. A study on pediatric epilepsy patients found that most complications were mild but required close monitoring during interventions like anesthesia. This emphasizes the importance of continuous education and training for school nurses to manage these cases effectively. Additionally, school nurses would benefit from having G-tube formulations available at schools. Unfortunately, it is more typical for school nurses to be given formulations by the family without any guarantee that these are up to standard.
A Call for Action
Neurosurgeons are in a pivotal position to advocate for better support and legal protections for school nurses administering G-tube feeds. The Cedar Rapids v. Garret F. ruling provides a legal framework for neurosurgeons to advocate for standardized G-tube protocols. Furthermore, a collaborative approach is essential. By collaborating with nurses, neurologists, dietitians and legal experts, neurosurgeons can ensure that children with neurological conditions receive the life-saving care they need, both in-and-out of the hospital. Protecting school nurses through clear guidelines and legal safeguards will help bridge the gap between hospital-based and school-based care. By pushing for reforms that ensure safe, consistent care for students with complex medical needs, neurosurgeons can help shape a health care system that protects both patients and the professionals responsible for their care.
References
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[8] Children’s Healthcare of Atlanta. (n.d.). Administration of medications (Chapter 3). https://www.choa.org/~/media/files/Childrens/medical-professionals/nursing-resources/ch-3-administration-of-medications.pdf
[9] Health Insurance Portability and Accountability Act, P.L. No 104-191, 110 Stat. 1938 (1996).
[10] Savage, T. A. (2017). Ethical issues in school nursing. OJIN: The Online Journal of Issues in Nursing, 22(3), Manuscript 4. https://doi.org/10.3912/OJIN.Vol22No03Man04
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[13] Katsiyannis, A., & Yell, M. L. (2000). The Supreme Court and School Health Services: Cedar Rapids v. Garret F. Exceptional Children, 66(3), 317-326. https://doi.org/10.1177/001440290006600303
[14] Alexander, J., & Nagi, D. (2020). Severe ketoacidosis in a non-diabetic lactating woman on a ketogenic diet. British Journal of Diabetes, 20(2), 145-146.
[15] National Association of School Nurses. (2016). NASN code of ethics. https://www.nasn.org/nasn-resources/resources-by-topic/codeofethics
[16] Sareen, A. P19 Development of a guideline on management of medicines for patients on a ketogenic diet Archives of Disease in Childhood 2018;103:e2.
[17] Klepper J, Leiendecker B. Glut1 Deficiency Syndrome and Novel Ketogenic Diets. Journal of Child Neurology. 2013;28(8):1045-1048. doi:10.1177/0883073813487600
[18] Tanner, A., Griffin, R., et al. (2024). A contemporary framework update for today’s school nursing landscape: Introducing the School Nursing Practice Framework™. NASN School Nurse, 39(3), 140-147. https://doi.org/10.1177/1942602X241241092
[19] Willgerodt, M.A., Brock, D. M., & Maughan, E.M. (2018). Public School Nursing Practice in the United States. Journal of School Nursing, 34(3), 232-244.
[20] National Association of School Nurses. (n.d.). Claim Your School. https://www.nasn.org/advocacy/advocacy-priorities-outreach
[21] National Association of School Nurses. (n.d.). Legislative priorities and outreach. https://www.nasn.org/advocacy/advocacy-priorities-outreach
Eliana Liporace
Eliana Liporace is an undergraduate student at Emory University ('27C). She is majoring in Neuroscience & Behavioral Biology with a minor in Community Building & Social Change, planning to pursue an MD/PhD in neurodegenerative diseases.
Maria Russ
Dr. S. Hassan A. Akbari is assistant professor of pediatric neurosurgery at Johns Hopkins All Children’s Hospital. He specializes in Chiari malformations and spasticity surgery.
