Parenting a Child on the Keto Diet

Picture of Sefton Eisenhart
Sefton Eisenhart

If you pay attention to ebb and flow of nutrition fads, then you have probably heard about the keto diet. According to the Harvard School of Public Health:

“The ketogenic or “keto” diet is a low-carbohydrate, fat-rich eating plan that has been used for centuries to treat specific medical conditions. In the 19th century, the ketogenic diet was commonly used to help control diabetes. In 1920 it was introduced as an effective treatment for epilepsy in children in whom medication was ineffective. The ketogenic diet has also been tested and used in closely monitored settings for cancer, diabetes, polycystic ovary syndrome, and Alzheimer’s disease.”

In recent years the diet has become popular for its potential to help people lose weight. It is the final form of the low-carb craze, and for many practitioners of this approach, they are really just attracted to the idea of the diet. The whole point of going to keto is to reach ketosis: a point where the body is using an alternative form of energy—instead of glucose, the body is burning ketones (hence the name).

Many variations of this diet can be difficult to follow, because a single slip up when it comes to consuming sugar or carbs can throw a person out of ketosis. For those using these diets as a weight-loss solution, this isn’t the end of the world. For those using keto or modified keto as a treatment for a neurological disorder, a slip up can be detrimental.

TREND has been created a Community Voice Report (CVR) in partnership with the Glut1 Deficiency Foundation. During our analysis, we saw that many people living with this disease, or people caring for someone living with this disease benefitted from some form of the keto diet. According to the foundation’s website:

“The ketogenic diet is carefully tailored to individual patients, has potential side effects, and should only be used under the care of medical professionals.  The diet can help improve most symptoms associated with Glut1 Deficiency, but often does not completely control them. Other forms of treatment are currently under investigation by Glut1 Deficiency researchers, but as of now there are no other available treatments.”

According to Glenna Steele, Executive Director of the Glut1 Deficiency Foundation and parent to a child with the disease:

“We often say we have a love hate relationship with the ketogenic diet. We love what it gives but hate what it takes. Not just in the cost and economic terms that are real, but in all the burdens it brings and the way it makes our already different loved ones feel even more ostracized, when all they want is just to be like everyone else.”

Our study picked up on the day-to-day struggles that can occur when trying to keep a child on a modified keto diet, and hopefully our analysis will lead to better strategies. Some of the most overlooked elements of rare diseases are the daily tasks and hurdles that have to be completed and overcome. Doctors make recommendations, but often don’t understand the reality of following them. TREND wants to shed light on this, and hopefully make life easier for community members.