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. 2025 Aug;10(4):1120-1132.
doi: 10.1002/epi4.70067. Epub 2025 May 29.

Ketogenic diet therapy for epilepsy during pregnancy and lactation: An international survey exploring clinician perspectives

Kelly Faltersack  1 , Tanya J W McDonald  2 , Valentina De Giorgis  3   4 , Bobbie Barron  5 , Mackenzie C Cervenka  2 , Anita Devlin  6 , Laura A Healy  7 , Magnhild Kverneland  8 , Elles van der Louw  9 , Mengyang Lu  5 , Martina P Zanaboni  4 , Marisa Armeno  10 , Elizabeth A Felton  11
Affiliations

Ketogenic diet therapy for epilepsy during pregnancy and lactation: An international survey exploring clinician perspectives

Kelly Faltersack et al. Epilepsia Open. 2025 Aug.

Abstract

Objective: Ketogenic diet therapies (KDTs) are increasingly used as a treatment for people with epilepsy of childbearing potential (PWECP) and glucose transporter type 1 deficiency syndrome (Glut1DS). The aim of this study was to collect information on clinical experience with KDT during pregnancy and lactation in these populations.

Methods: Between December 2023 and June 2024, an online survey was widely circulated to healthcare professionals (HCPs) working with PWECP and people with Glut1DS of childbearing potential on KDT. The survey explored KDT use during pregnancy and lactation. Only HCPs working with patients who expressed interest in KDT and who were planning to become pregnant or were already pregnant were invited to complete the survey.

Results: Thirty-five HCPs had counseled patients about whether to follow KDT during pregnancy. Sixty percent of HCPs did not recommend KDT during pregnancy. Key concerns included a lack of expertise with KDT use during pregnancy, insufficient data on the safety of KDT use during pregnancy, and uncertainty about the impact on fetal development. Among the HCPs (40%) who recommended KDT during pregnancy, there was no consensus regarding the version of KDT or optimal macronutrient composition. Even fewer HCPs (n = 5) had provided counseling on diet adaptation during lactation. Low Glycemic Index Treatment and the modified Atkins diet were most recommended. Blood ketone monitoring was unanimously recommended during lactation.

Significance: Based on the survey results, HCPs have variable opinions about the safety, management, ideal diet, and levels of ketosis for people with epilepsy (PWE) and Glut1DS on KDT during pregnancy and lactation. There was consensus about monitoring ketosis levels and ensuring micronutrient supplementation. Patient enrollment in pregnancy registries that capture KDT use is crucial to support future research and expand knowledge about the safety of KDT so HCPs and PWE or Glut1DS can make informed decisions about their treatment.

Plain language summary: Most healthcare providers (HCPs) did not advise ketogenic diet therapy (KDT) for epilepsy during pregnancy, though some noted exceptions for glucose transporter type 1 deficiency syndrome. Their main concerns were not having enough information about safety for the parent and fetus and their own lack of experience using KDT during pregnancy. The 40% of HCPs who supported the use of KDT during pregnancy stressed the need for personalized care and close monitoring to reduce risks. Few HCPs have used KDT during lactation. Experts advised using more flexible versions of KDT during lactation. More research is needed.

Keywords: Glut1DS; breastfeeding; childbearing potential; classic ketogenic diet; ketogenic metabolic therapy; ketones; ketosis; low glycemic index treatment; modified Atkins diet.

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Conflict of interest statement

Dr. McDonald has received grant support from the American Heart Association and the American Epilepsy Society. Bobbie Barron has received royalties from Demos Health/Springer Publishing Company during the period of the research activity and generation of the current report. Dr. Cervenka has received support from the Johns Hopkins Center for Refractory Status Epilepticus and Neuroinflammation, has served as a paid consultant for Nutricia/Danone, and Vitaflo/Nestle Health Science, has received honoraria from Nutricia/Danone, Vitaflo/Nestle Health Science, and royalties from Demos Health/Springer Publishing Company during the period of the research activity and generation of the current report. Dr. Devlin has received honoraria for advisory boards, speaking, and training from Nutricia, Takeda, Zogenix, GW Pharma, Biocodex, and UCB. Dr. De Giorgis has received research grants from Jazz Pharmaceuticals, speaker and consultancy fees from Nutricia Gmbh, Vitaflo, Dr. Schar Kanso, and has served as a consultant/advisor for Longboard Pharmaceuticals and Dr. Schar Kanso. Dr. Healy has received speaker honoraria from Nutricia/Danone. Dr. Kverneland has received speaker honoraria from Nutricia/Danone. Dr. Zanaboni has received consultancy fees from Vitaflo. Dr. Armeno has received speaker and consultancy fees from Nutricia/Danone, Ajinomoto/Cambrooke, and Vitaflo. Dr. Felton has served as a paid consultant for Abbott and Vitaflo/Nestle Health Science. The remaining authors have no conflict of interest to disclose. We confirm that we have read the journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Figures

FIGURE 1
FIGURE 1
Inquiries about ketogenic diet therapy implementation in pregnancy and lactation. KDT, ketogenic diet therapy; NA, not applicable.
FIGURE 2
FIGURE 2
Distribution of healthcare professionals who participated in the survey. NA, not applicable.
See this image and copyright information in PMC

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