Human milk and breastfeeding during ketogenic diet therapy in infants with epilepsy: Clinical practice guideline

Elles van der Louw; Petra Trimmel-Schwahofer; Anita Devlin; Marisa Armeno; Lindsey Thompson; J Helen Cross; Stéphane Auvin; Anastasia Dressler

doi:10.1111/dmcn.15928

Human milk and breastfeeding during ketogenic diet therapy in infants with epilepsy: Clinical practice guideline

Dev Med Child Neurol. 2024 Apr 26. doi: 10.1111/dmcn.15928. Online ahead of print.

Authors

Elles van der Louw¹, Petra Trimmel-Schwahofer^{2

3}, Anita Devlin^{4

5}, Marisa Armeno⁶, Lindsey Thompson⁷, J Helen Cross⁸, Stéphane Auvin^{3

9

10

11}, Anastasia Dressler^{2

3}

Affiliations

¹ Department of Internal Medicine, Division of Dietetics, Erasmus MC University Medical Center, Rotterdam, the Netherlands.
² Department of Pediatrics and Adolescent Medicine, Medical University Vienna, Vienna, Austria.
³ European Reference Network, EpiCARE.
⁴ Paediatric Neurology, Great North Children's Hospital, Newcastle upon Tyne, UK.
⁵ Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK.
⁶ Department of Nutrition, Hospital de Pediatria Prof. Dr. J.P. Garrahan, Buenos Aires, Argentina.
⁷ Children's Mercy Hospital and Clinics, Kansas City, Missouri, USA.
⁸ UCL NIHR BRC Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children NHS Trust, London, UK.
⁹ APHP, Service de Neurologie Pédiatrique, Hôpital Robert Debré, Paris, France.
¹⁰ Université Paris-Cité, INSERM Neuro Diderot, Paris, France.
¹¹ Institut Universitaire de France (IUF), Paris, France.

PMID: 38669468
DOI: 10.1111/dmcn.15928

Abstract

Ketogenic diet therapy (KDT) is a safe and effective treatment for epilepsy and glucose transporter type 1 (GLUT1) deficiency syndrome in infancy. Complete weaning from breastfeeding is not required to implement KDT; however, breastfeeding remains uncommon. Barriers include feasibility concerns and lack of referrals to expert centres. Therefore, practical strategies are needed to help mothers and professionals overcome these barriers and facilitate the inclusion of breastfeeding and human milk during KDT. A multidisciplinary expert panel met online to address clinical concerns, systematically reviewed the literature, and conducted two international surveys to develop an expert consensus of practical recommendations for including human milk and breastfeeding in KDT. The need to educate about the nutritional benefits of human milk and to increase breastfeeding rates is emphasized. Prospective real-world registries could help to collect data on the implementation of breastfeeding and the use of human milk in KDT, while systematically including non-seizure-related outcomes, such as quality of life, and social and emotional well-being, which could improve outcomes for infants and mothers.