History of the Ketogenic Diet in Infants
For many decades, the idea of using the ketogenic diet for infants with epilepsy was discouraged. Concerns were raised in chapters and books about the diet that infants were highly likely to become hypoglycemic, have complications, and unlikely to achieve ketosis. Although infants often have seizures, and at times very difficult-to-control seizures, until the 1990s, we also did not have pre-made, commercially-available ketogenic diet infant formulas. Even though most anticonvulsant drugs are not FDA-approved for use in infants, this was the main treatment option for most child neurologists.
Things have changed drastically in the last few years. Published research has shown that not only can infants become ketotic, but they respond very well to dietary therapy.
In fact, infantile spasms is one of the established "indications" for ketogenic diet treatment. An article from last year by Dr. Anastasia Dressler from Vienna even stated, "The ketogenic diet is highly effective and well tolerated in infants with epilepsy. Seizure freedom is more often achieved and maintained in infants."
Adding to this rising tide of acceptance, the European Journal of Paediatric Neurology published guidelines for the use of ketogenic diets in infancy (defined as less than 2 years of age) this month. This was a group effort from 15 neurologists and dietitians with particular expertise in using ketogenic diet in infancy, convened at a conference in London in April 2015.
What does this guideline say?
Much of it is information about infants that already has been established and is similar to older children. The authors comment that the ketogenic diet can be helpful for infantile spasms, epilepsy with migrating seizures, and GLUT-1 deficiency (along with other indications). They recommend a ketogenic diet team handle each case with close supervision. There are recommendations for fine-tuning and giving the diet 2 to 3 months to gauge efficacy.
However, there are some key differences and unique recommendations:
- All infants should be admitted
- The ratio should be increased daily from 1:1 to 2:1 to 3:1
- Infants should not be fasted
- When formula is weaned to solids, ensure adequate vitamin and mineral supplementation (as many formulas have these supplements included)
- Closely watch blood glucose during the start of the diet
- Check blood ketones during the initiation period as well
- Breastfeeding is possible with 3:1 ketogenic diet formulas
These interesting points have research to back them up, but the authors acknowledge much of it is "limited" and somewhat expert-based opinions. At the Johns Hopkins Children’s Center, we do not check blood ketones due to limited evidence for relevance, but this is obviously controversial. However, it is difficult to argue with more careful monitoring of infants and fasting can certain lead to hypoglycemia more commonly. This is good advice.
What this means for infants with epilepsy?
These guidelines are welcome and helpful for discussion about infants. Just as with any expert-consensus based guidelines (including the International Ketogenic Diet Study Group’s overall ketogenic diet consensus from 2009) these are recommendations, not rules or laws.
What is clear is that more centers today than ever before are thinking carefully about using the ketogenic diet for infants.
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 Jul 17. pii: S1090-3798(16)30098-8. doi: 10.1016/j.ejpn.2016.07.009. [Epub ahead of print]
Dressler A, Trimmel-Schwahofer P, Reithofer E, Gröppel G, Mühlebner A, Samueli S, Grabner V, Abraham K, Benninger F, Feucht M. Dressler A, Trimmel-Schwahofer P, Reithofer E, Gröppel G, Mühlebner A, Samueli S, Grabner V, Abraham K, Benninger F, Feucht M. Epilepsy Res. 2015 Oct;116:53-8.