Knowing your child is living with a neurological disorder can be overwhelming and scary. Fortunately, with advancements in medicine along with lifestyle and diet modifications, children living with epilepsy can have very full lives. So, in celebration of Purple Day, March 26, a day focused on raising awareness for epilepsy, we asked Dustin Diller, NP, PPG – Pediatric Neurology, to answer our questions regarding the ketogenic diet and the benefits it can provide children suffering from seizures.
What is the ketogenic diet?
The classic ketogenic diet, also known as the long-chain triglyceride diet, is a unique high-fat, low-carbohydrate program that helps control seizures in people with epilepsy. It consists of 3-4 grams of fat for every 1 gram of carbohydrate and protein. Usually, this diet is prescribed by a physician or advanced practice provider and monitored carefully by a dietician. It’s much stricter than the modified Atkins™ diet, and requires the patient to carefully measure calories, fluid and protein.
Normally, the body uses carbohydrates for fuel, but because the ketogenic diet is so low in carbohydrates, fats become the primary fuel source. The name ketogenic means that it produces ketones in the body. Ketones are not dangerous and can be detected in the blood, urine and breath. Ketones are one of the more likely mechanisms of the diet, as higher levels often lead to improved seizure control.
Unfortunately, there aren’t any dietitians in our area who specialize in the ketogenic diet, so more often than not, this program is managed by a larger facility such as Riley Children’s Hospital or Cincinnati Children’s Hospital.
Who would benefit most from the diet?
Specifically speaking regarding epilepsy and seizures, this type of stringent diet is most effective and beneficial for those with medically refractory (drug-resistant) epilepsy, meaning they failed to control the seizures with multiple different medications. In general, the ketogenic diet could be a beneficial treatment as long as there are no clear metabolic or mitochondrial reasons not to do it.
Is the ketogenic diet a safe and effective treatment in place of medication?
When starting the ketogenic diet, seizures are controlled using both the diet and anti-epileptic medications (AED). As the diet progresses and becomes more consistent, there is a possibility of weaning off one or more AEDs. However, this is not a definitive fact. This diet is usually used in combination with medications because it’s not a safe stand-alone treatment modality. Instead, we see it as a partnership between drugs and food, which we make sure to discuss with patients.
What can someone expect when they begin a ketogenic diet for seizure control?
Patients who begin this diet are closely monitored by a dietician and physician. Their care team will order baseline labs before the patient starts and monitor throughout the first few months. Initially, the patient can expect to be admitted to the hospital for a few days so that their labs can be monitored closely and professionals can help them follow the recommended dietary plan. The overall goal is to successfully understand the diet before discharge from the hospital because consistency is critical when managing seizures.
Typically, the diet is prescribed based on weight, 75-100 calories for each kilogram of body weight. The “ratio” is the ratio of fat to carbohydrate and protein grams combined. The 3:1 ratio is for infants, adolescents and children who require higher amounts of protein or carbohydrates. The 4:1 ratio is stricter and regularly used for most children. The acceptable foods that provide fat on the ketogenic diet include butter, heavy whipping cream, mayonnaise and oils (olive, canola, etc.). Patients should not eat any other sources of carbohydrates.
Does the ketogenic diet have any side effects?
The most common side effect is a sluggish feeling for a few days after starting the diet. These side effects are worse if the child is sick when beginning the program. Hydration is essential, but carbohydrate-free fluids are a must during illnesses. Long-term side effects from an extended ketogenic diet can include kidney stones, high cholesterol, constipation, slow growth and sometimes bone fractures. For this reason, it is vital that a care team closely monitors the patient throughout the diet.
How can parents and caregivers know if the ketogenic diet is right for their child?
First and foremost, educating parents and caregivers on when the ketogenic diet is beneficial is essential. We do not use it in isolation as a treatment modality for seizures. Instead, we utilize the diet as a partnership with medications. If a child has failed seizure control with multiple different anti-epileptic medications, and a parent feels that the patient could follow the strict diet, they should discuss it with their provider. I wholeheartedly believe the parent is the child’s biggest advocate. Once medications no longer work, the ketogenic could be beneficial. It has shown a 50% reduction in the number of seizures in half of children and 10-15% became seizure-free.
For additional information regarding the ketogenic diet or epilepsy in general, please visit the Epilepsy Foundation. They have a wealth of knowledge for both patients and caregivers.
