Robyn Blackford RDN, LDN answers questions. Click here to see more of our “Ask the Keto Dietitian” series.

Please tell us about yourself and what you do as a ketogenic dietitian.

Hello! Hello! My name is Robyn and I work at Lurie Children’s Hospital, Chicago. Since 1995, I have been a pediatric ketogenic dietitian. Nearly 300 patients are managed by our center on the Medical Ketogenic Diet. The medical ketogenic diet has amazing possibilities. I believe all patients should be able to try it and have it carefully monitored by a medical ketogenic center.

I’m also one of the Keto Ambassadors in Nutricia North America. Here I mentor and teach the medical ketogenic diet to healthcare professionals.

Personal note: I am married to Jason for many years, and the mother of two teenagers.

What is Dravet syndrome?

Dravet Syndrome, a rare and severe form of epilepsy, is characterized by frequent, or prolonged, seizures that begin in the first year. One in 15700 people will be diagnosed with this epilepsy diagnosis. 80% of those affected by the SCN1A mutation will also have it.

What are the symptoms and signs of Dravet syndrome?

In 2015, a study showed that patients with Dravet Syndrome usually have at least four of the five following symptoms:

Normal or nearly-normal cognitive and motor development prior to seizure onset. Two or more seizures with or with no fever before the age of 1 year. Seizure history that includes myoclonic or hemiclonic seizures or generalized tonic clonic seizures. Two or more seizures lasting more than 10 minutes. Failure to respond to antiepileptic drugs with continued seizures after the age of 2.

Are you able to help patients suffering from Dravet syndrome who are on a medical ketogenic diet

Yes, we have a large number of Dravet Syndrome patients at our Epilepsy Center. Many of them are on the medically ketogenic diet. Patients with Dravet syndrome are often in the intractable category of epilepsy, which means they don’t respond to first- or second-line medication. This is why the medical ketogenic diet is frequently recommended as a next-line option. Many research studies have been conducted by the Epilepsy Center with Dravet Syndrome patients and their families.

Are patients with Dravet syndrome able to manage seizures using the medical ketogenic diet?

Yes, medical ketogenic diets can be very helpful in controlling seizures in epilepsy patients. Because this diagnosis can often be made earlier in life, I recommend that the diet be included in patients’ treatment. My experience has shown me many times that early diagnosis and careful management can result in successful seizure control. This is a win-win situation for both our patients and ourselves.

Are patients with Dravet syndrome able to manage seizures using the medical ketogenic diet?

Yes, research supports the use of medical ketogenic diets for Dravet Syndrome patients. You can find a lot of information at the Dravet Syndrome Foundation’s (DSF) website about past and current research for patients with Dravet Syndrome. The Patient-Centered Outcomes Research is also available on the website. This provides evidence-based information to patients and their doctors in order for them to make better health care decisions. It also answers questions about the possible benefits and risks of various care options. The PCOR includes the medical ketogenic diet.

Dr. Linda Laux and I published an article in 2013 that showed that 65% of Dravet Syndrome children at our center experienced a greater-than 50% decrease in their seizure frequency after following the medical ketogenic diet.

Are your Dravet Syndrome patients allowed to continue taking their antiepileptic medications (AEDs) even though they are on the medical ketogenic diet?

Many patients with Dravet syndrome continue to use AEDs. My wonderful team of professionals and I always strive for the lowest number of seizures possible while minimizing side effects. They are constantly looking for ways to reduce medication without losing seizure control. They seek to balance the quality of life and seizures. The medical ketogenic diet can be a wonderful addition to seizure management plans, especially when it replaces sedating medications that are not beneficial to the patient’s quality-of-life.

Is there a particular type of medical ketogenic diet that Dravet patients should follow (e.g., the classical ketogenic or modified Atkins diets)?

There is no one type of medical ketogenic diet recommended. All of these diets can be useful in seizure control. There may be differences in the feeding habits and ages of patients, which could affect the choice of diet. These issues should be discussed with your child’s keto and neurology providers.

What length of time do Dravet patients typically remain on the medical ketogenic diet?

The diet can be continued for as long as the patient needs to manage seizures. For the duration of the keto diet, the team will need to see the patient periodically for blood work and follow-up. Patients may be on the diet for several years before they decide to wean off the diet, or to simply change to a more restrictive diet such as the modified Atkins diet. The plan of your keto team would dictate that if the medical ketogenic diet is not beneficial, it would be discontinued sooner.

What can Dravet families do to find out more about the medical ketogenic diet for their loved ones?

These are my top picks for websites that provide more information.

Dravet Syndrome FoundationCharlie FoundationLurie Children’s Ketogenic Diet Program

References:

Laux L., Blackford R. The ketogenic Diet in Dravet Syndrome. J Child Neurol. 2013;28(8):1041-1044. doi:10.1177/0883073813487599.

Wu, E., et. al. (2015). Dravet Syndrome: Incidence in the US Pediatrics 136(5), 1310-e1315. doi: 10.1542/peds.2015-1807.

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