For this month’s KetoNews, I asked Dr. Lindsey Thompson, the ketogenic dietitian for Children’s Mercy in Kansas City to write about breastfeeding and the ketogenic diet. This question comes up quite a bit from parents, and Dr. Thompson is one of the world experts regarding how to make it work successfully. – Eric Kossoff
When it comes to infants living with epilepsy, we know two things to be true:
- Human milk is the optimal nutrition for babies and provides numerous benefits to both baby and mother in the first years of life.
- The ketogenic diet is an effective treatment for infants with epilepsy and can be presented as a treatment option early in life
So, for a breastfed infant with seizures, can they have the best of both worlds, reaping the benefits of both breastmilk and the ketogenic diet?
The answer: YES…most of the time.
In the few studies that have been published on this subject, infants with epilepsy who included breastmilk in their ketogenic diets were able to achieve adequate levels of ketosis* and in a timely manner. In these same infants, a ketogenic diet with breastmilk was shown to be as effective as a ketogenic diet without breastmilk in terms of seizure reduction. The caveat is that the amount of human milk and the route by which it is offered (at the breast versus expressed) can vary depending on your baby’s nutrition needs and their ketogenic diet requirements.
Let’s dive in further. Human milk has about half of its calories from fat, 40% from carbohydrates and 10% from protein. So, if a very high ketogenic ratio (~4:1) is required for seizure control, breastmilk may not be able to be incorporated at all, or in very minimal amounts.
Two approaches to breastfeeding while initiating the ketogenic diet
In general, there are two clinical approaches that have been used to continue offering an infant breastmilk while initiating the ketogenic diet. These will differ based on the Epilepsy Center and their practices. I have summarized these approaches and their possible benefits and downsides:
Approach 1: Mother expresses breast milk (pumping) and expressed breast milk is combined with high fat (ketogenic) formula.
As the ketogenic diet ratio is increased, less expressed breast milk is used in the formula recipe.
- Benefits: Accuracy, easy to fine tune the diet when needed for seizure control, standard infant formula can be used as a backup if expressed breast milk is not available, expressed breast milk can be frozen for later use
- Downsides: Baby does not continue at the breast, mother must express all milk
Approach 2: Gradually decrease the time baby is at the breast and offer high fat (ketogenic) formula before or after breastfeeding.
As the ketogenic diet ratio is increased, the baby is offered less time at the breast. In a few instances, ketogenic dietitians have also used a supplemental nursing system (SNS) to offer ketogenic formula while the baby is breastfeeding.
- Benefits: Baby can continue at the breast
- Downsides: Less accurate (in theory ketones may fluctuate more than Approach 1, although this has not been specifically studied), more difficult to fine tune if seizures persist
Neurologists and dietitians are often most comfortable with Approach 1 due its accuracy; however, the mother and baby’s desires and goals are important considerations in the plan moving forward. The approach that is right for you and your infant will depend on a lot of factors and I encourage you to speak with your Epilepsy team.
One question I always receive from breastfeeding mothers is “can I just follow a ketogenic diet myself, and produce ketogenic milk?” Unfortunately, we don’t think it works this way; although research is needed to confirm this. Clinically, when moms have followed carbohydrate restricted diets their milk composition did not change; however, this has not been confirmed in systematic research studies.
*In infants, it is important to follow the blood levels of ketones because urine ketones have been shown to be less reliable in the studies published.
Arthur I, Eidelman M, Richard J, Schanler MD. Breastfeeding and the use of human milk. Pediatrics 2012;129(3):15.
Dressler A, Häfele C, Giordano V, Benninger F, Trimmel-Schwahofer P, Gröppel G, Samueli S, Feucht M, Male C, Repa A. The Ketogenic Diet Including Breast Milk for Treatment of Infants with Severe Childhood Epilepsy: Feasibility, Safety, and Effectiveness. Breastfeed Med. 2020 Feb;15(2):72-78.
Le Pichon JB, Thompson L, Gustafson M, Abdelmoity A. Initiating the ketogenic diet in infants with treatment refractory epilepsy while maintaining a breast milk diet. Seizure. 2019 Jul;69:41-43.
van der Louw E, van den Hurk D, Neal E, Leiendecker B, Fitzsimmon G, Dority L, Thompson L, Marchió M, Dudzińska M, Dressler A, Klepper J, Auvin S, Cross JH. Ketogenic diet guidelines for infants with refractory epilepsy. Eur J Paediatr Neurol. 2016 Nov;20(6):798-809.
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