The ketogenic diet program at Texas Children’s Hospital

Treating Intractable Epilepsy with Diet: The Ketogenic Diet Program at Texas Children’s Hospital

Texas Children's Hospital

June 01, 2023

A robust ketogenic diet program is an essential tool for any epilepsy treatment center. For the past five years, the Epilepsy Center at Texas Children’s Hospital, known for its groundbreaking advances in epilepsy surgery, has heavily invested in its ketogenic diet program. Gloria Diaz-Medina, MD, pediatric neurologist, and Akshat Katyayan, MD, pediatric neurologist are co-directors of the Ketogenic Diet Program at Texas Children’s and have recently added Maureen Handoko, MD, PhD, pediatric neurologist, as their third dedicated ketogenic diet physician.

“If you look at many of the top programs in the country, they are either really good surgical programs or they are really good medical or keto programs,” said Dr. Katyayan. “We have struck the right balance wherein we are a well-known surgical program and also a very large ketogenic program.”

Traditional medical ketosis

While low-carbohydrate high-fat diets have been highly publicized for weight loss in recent years, a medical ketosis program requires strict adherence and monitoring and is typically only used for recalcitrant epilepsy when 2 or more medications have failed to have a significant effect.

“The reduction of glucose in the body plus production of ketone bodies have been shown to be neuroprotective to the brain and control seizures,” said Dr. Diaz-Medina.

Though the specific metabolic pathway, or likely pathways, by which the diet works are unknown, the formula for generating ketone bodies is well understood: for every 5 grams of food a patient eats, 4 grams must be fat and 1 gram must be protein and/or carbohydrate. If this ratio is strictly adhered to, the body will produce the desired ketone bodies. Blood monitoring for beta-hydroxybutyrate — a type of ketone body — in the clinic and urine dipsticks for ketones at home are both used to ensure that the patient has achieved the desired state of ketosis.

Initiating a ketogenic diet in children

Significant efforts are made by the physicians and dietitians at the Ketogenic Diet Program at Texas Children’s to educate caregivers and patients about the diet before it begins.

“The traditional ketogenic diet is a strict diet. It requires hospital admission during the initiation because it carries a higher risk for complications, such as low blood sugar and acid-base imbalance,” said Dr. Handoko.

During this time, the patient’s diet is gradually transitioned over the course of 4-5 days to the 4:1 ratio of fats to protein and carbohydrates. Labs are checked frequently, and the family receives further education about implementing the diet at home.

“Once they are stable in the hospital, their blood glucose has been stable and the acid in the blood has been stable, in general, they stay stable after discharge,” said Dr. Diaz-Medina.

Alternatives to a traditional ketogenic diet

Some patients are unable to adhere to the rigor required in a traditional ketogenic diet or do not tolerate it metabolically.

“For a formula-fed patient, the ease of transition to the ketogenic diet formula improves compliance,” said Dr. Handoko. For this reason, infants and G-tube fed patients are typically placed on the traditional ketogenic diet.

“If older patients have more restrictive eating habits, then they are more likely to go on an outpatient diet like a Modified Atkins or a low glycemic diet,” said Dr. Katyayan.

Older children can still benefit from a degree of carbohydrate restriction guided by the experts at a ketogenic diet program. These diets can be initiated in the clinic, as they do not have a significant risk of low blood sugars or acid-base imbalances. Likewise, ketone bodies are not measured as routinely. The patient’s seizure frequency is followed closely instead.

“There is research that seems to indicate that the success rates of modified Atkins and low glycemic index diets may be comparable to the traditional ketogenic diet, but still, multiple decades of research is available on a traditional ketogenic diet, and so generally if we can do the traditional ketogenic diet, that’s always the preference,” said Dr. Katyayan.

Evaluating the effectiveness of ketogenesis and low glycemic diets

Regardless of which diet patients start, they will continue to see the providers at the Ketogenic Diet Program for evaluation.

“We usually tell them, ‘Please give us 3-6 months to see if the diet will be effective.’ For us, that means that there has been more than 50% seizure reduction from their baseline. If that has been achieved, then we keep them on the diet for at least 2 years,” said Dr. Diaz-Medina.

Many patients at 2 years will opt to stay on the diet if it is effective. There is no limit to how long a child can stay in ketosis if their monitoring labs remain stable. Even if the diet is going well, some patients will decide to wean off the diet. If the seizures return during this process, which occurs over several weeks, the patient returns to the fat, protein, and carbohydrate ratio they were at before the increased incidence of seizures. Many patients, however, tolerate the gradual return to carbohydrates.

“At the 2-year mark, if we decide to wean off, 80% of those patients will retain the benefit from the diet even though it has been stopped,” said Dr. Diaz-Medina.

Referrals to the Texas Children's Ketogenic Diet Program originate from Texas Children’s Epilepsy Center. Refer a patient to Texas Children's Epilepsy Center through their online portal or by calling 832-TCH-CARE (832-824-2273).