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Ketogenic Diet: Weight Loss Fad Serves Essential Need for Epilepsy Patients

Read what these experts say about what has become the latest low-carb, high-fat plan

If you were trying to watch your waistline in the early 2000s, you probably remember the Atkins fad. While the low-carb diet has since fizzled out, another low-carb, but high fat plan is the latest craze helping people lose weight. It’s called the ketogenic diet (KD), and there is a version of this diet that is also used as an essential part of treatment for many epilepsy patients at the Jane and John Justin Neurosciences Center at Cook Children’s.

While many people may have just recently heard of KD, it’s long been a treatment for some children with uncontrollable seizures. These are children who have found little or no relief after failing multiple seizure drugs and treatment methods. With the KD, there are many children who have achieved dramatic reduction in their seizures.

So what is KD exactly?

When used for our epilepsy patients, it is based on a specific ratio of fat: protein + carbohydrate. For example, 3:1 and 4:1 are frequently used KD ratios which means that 75 to 80 percent of the patient’s total calories are coming from fat! This is what is known as the classic ketogenic diet.

This means that for every 3 or 4 grams of fat in the diet, there is 1 gram that is a combination of protein and carbohydrate. Families whose children are placed on the KD are given a specific meal plan for their children. Each meal and snack consists of a combination of food items in specific gram amounts that will yield the prescribed diet ratio.

The KD diet is recommended for specific neurology and epilepsy patients. Good candidates for the diet include patients with seizures that are intractable to drug therapy and patients with metabolic disorders of carbohydrate metabolism, specifically Glucose-1 transporter deficiency syndrome and Pyruvate dehydrogenase deficiency syndrome. There are some medical conditions that make the KD dangerous, such as defects in beta-oxidation, carnitine deficiency and porphyria.

“The ketogenic diet is predominantly used in our patients with intractable epilepsy, specifically those with infantile spasms and Lennox-Gastaut Syndrome,” said Cynthia Keator, M.D., a neurologist and the director of the Ketogenic Diet Clinic at Cook Children's. “ The children are hospitalized to initiate the diet due to possible severe adverse effects (described below). The method on how the diet works is by the by the brain being forced to use ketone bodies (the by-products of fat/lipids) as a fuel source instead of carbohydrates (which is usually the main and quickest primary source of energy for the human body). By using ketones bodies as fuel, this may decrease some patient’s seizures. To date, the mechanism underlying beneficial effects of the Ketogenic diet remain a mystery.”

Unfortunately, about a third of patients do not respond to the ketogenic diet. When the diet does work, however, patients can experience 50 to 90 percent seizure reduction. If seizures improve from being on the diet, some patients can have their medications decreased, however, total elimination of all seizure drugs in rare.

Children usually spend no more than two years on the diet, either because it can be successfully tapered off, it fails to work, or due to the risk of long-term side effects including osteoporosis, elevated triglycerides, kidney stones, constipation, nausea, vomiting, pancreatitis, anemia, and rarely prolonged Q-T syndrome.

At Cook Children’s, the patients are monitored by an experienced team of epileptologists, led by Dr. Keator. The children placed on the diet are offered:

  • Counseling and initial monitoring at a tertiary care center.
  • A full staff of nutritionists, counselors and other support staff.

So should this diet that’s taken so seriously at Cook Children’s be a part of a summer weight-loss program for parents or kids who are just looking to shed a few pounds?

“The ketogenic diet can be helpful under certain circumstances, but it is not a diet for everyone,” said Jessica Holy, a clinical dietitian who works with the neurosciences at Cook Children’s. It should also be noted that the diet used for our neurology patients is the classic ketogenic diet described by a 3:1 or 4:1 ratio of fat: protein + carbohydrate. The KD making news today that is being used in the general population is not as strict and is closer to a 1:1 ratio. “The classic ketogenic diet at the 3:1 or 4:1 ratio is not medically recommended for the general population due to its adverse effects and possible nutritional deficiency which is dangerous,” states Dr, Cynthia Keator, “however a modified version, closer to a 1:1 ratio, with the aid of a nutritionist and your primary doctor can be accomplished for weight loss and health concerns.”

For anyone just starting the diet, low blood sugar is common. But for children not being monitored by the neurologists at Cook Children’s, the ketogenic diet comes with other concerns.

“We order a glucometer and testing supplies for our KD families so they can test their children’s blood sugar at home and the amount of ketones in the urine,” Holy said. “For both small children and teens, a concern would be inadequate intake of a number of vitamins and minerals that are found in regular portions of fruits, vegetables and grains, all of which are very limited on a KD. Another concern for both groups would be kidney stone formation. When the body maintains a state of ketosis for weeks or months, the balance of acid and base in the blood is disrupted. This can place a person at risk for kidney stone formation, especially if fluid intake is inadequate.”

Holy said the growth of younger children could be slowed though use of the KD due to vitamin and mineral deficiencies, insufficient calorie and/or protein intake and acidosis that is left untreated. The KD does not provide adequate amounts of calcium, so younger children are at risk for poor bone development and teens are at risk for bone loss.

“If families are not trained on what to look for and monitor, some of these side effects can have serious medical consequences,” Holy said. So how do you go about trying to make dietary changes and be “keto friendly” without causing dietary concerns?

Instead of focusing on eating, Holy suggests parents help their child find a way to be more active before tackling a diet.

“When you start to move more, your endorphin production goes up and you start to feel better. This can lead to a natural desire to make better food choices,” Holy said. “I think a reasonable way to approach a low-carbohydrate lifestyle is to, first, try to eliminate all sources of concentrated sugar. This includes obvious things like candy, cakes, cookies, pies, soft drinks and juice drinks, but also check food labels of processed foods.”

Holy recommends parents monitor how much sugar is in their child’s favorite cereal or breakfast bar. Many flavored yogurts are high in sugar.

Next, try to prepare more foods at home and limit visits to fast food restaurants. Think about meals that have a vegetable as the main dish with a side of protein and a small portion of a carbohydrate. Incorporating sources of healthy fats into the diet can add great flavor and keep you feeling fuller longer. For example, use olive oil as a salad dressing or drizzle it over cooked vegetables; have half of an avocado with a meal or for a snack; add nuts and seeds to salads or have a handful as a snack.

These smart choices can make for healthy lifestyle choices that last a lifetime and not begin a life-long trend of following the latest diet fads.

About the Jane and John Justin Neurosciences Center



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