NeuroVoices: Robyn Blackford, RD, LDN, on the Process and Importance of Dietary Approaches to Epilepsy

SAP Partner | <b>Dravet Syndrome Foundation</b>

The registered dietitian at Ann & Robert H. Lurie Children’s Hospital of Chicago provided knowledge on the how and why diets are constructed for patients with epilepsy.

For over 15 years, Robyn Blackford, RD, LDN, has worked as a registered dietitian (RD), specializing in nutrition for epilepsy, and diets such as the classic ketogenic diet, modified Atkins diet, and modified ketogenic diet. Her clinical interests involve prescribing and modifying these diets for those with genetic disorders and intractable epilepsies, as well as training and monitoring health professionals about ketogenic therapies.

The benefits from these approaches have been well documented. Tailored to each individual, dieting not only helps patients live an overall healthier life, but it can have direct impact on the control and management of seizures. These diets are typically administered at a young age but are still highly prevalent for adolescents and adults. Despite the advantages they bring, the reasons for why they impact the underlying cause of seizures remains unknown.

Blackford, who currently works at Ann & Robert H. Lurie Children’s Hospital of Chicago as an RD, sat down with NeurologyLive as part of a new iteration of NeuroVoices. In the first half of the conversation, she provided insight on her daily operations, the process of tailoring diets properly, and the variation in diets available to patients.

NeurologyLive: Can you first discuss your job role and a bit of what you do on your day-to-day basis?

Robyn Blackford, RD, LDN: As a registered dietitian, I am in the hospital when I do clinical work. I do both inpatient and outpatient work. My typical day is going to be a mix of both of those things. When I do land initiation of a ketogenic diet, its typically a 4-day stay in in the hospital. Every day I spend a few hours with that patient in their room doing nutrition education so that the families know how to do home management of the ketogenic diet. That’s usually for a few hours of the day. I’ve got a bunch of other patients that might be in the hospital, whether that’s because they have some illness or increased seizures. I would also round with those families and the medical teams they’re on because I do more than just the epilepsy floor.

Some of my patients are in the ICU, whether that’s the PICU (pediatric intensive care unit) or the NICU (newborn intensive care unit), or they might be on a general medicine floor for something else. I’m all over the hospital, talking with different medical teams and helping them manage the ketogenic diet for inpatients. I spend the rest of my day at my desk usually doing outpatient work. I work 1 clinic per week, and right now everything is telehealth. I will be in a clinic room with our nurse practitioner doing outpatient visits that way, but I also sit at my desk making phone calls and answering messages from families. Our nursing team takes our phone calls through the office. Sometimes, the nursing team needs me to answer questions with regards to the diet. It makes for busy times, but I really appreciate the back and forth in both worlds, both inpatient and outpatient.

What types of diets are available for patients with epilepsy? How do they differ?

There are a variety of ketogenic diets for these patients. The gold standard is the classic ketogenic diet. It is a diet based on ratios of the macronutrients. I like to think of it as a dose of medicine. For patients, this would be the dose of their diet. It’s a ratio of fat to nonfat in their diet. The nonfat portion might be protein and carbohydrates added together. You’ll usually get a 3:1 or 4:1 ketogenic ratio. That just means 4 parts fats to 1 part nonfat of the diet. I make sure all these calculations are weighed on the right ratio.

For the last classic ketogenic diet, everything is weighed on a gram scale. Every calorie, everyone protein carbohydrate fat down to the 100th of a gram. That way, we make sure that patients stay in the correct amount of ketosis, and everything is measured. There’s also the modified Atkins diet, sometimes called MAD. There’s a lot of terms thrown around about what these diets are, but that diet is more of a carb-counting type of diet. It might be used for older patients. Teenagers and adults are more commonly on a modified Atkins diet. It’s a bit more liberal because you’re counting carbohydrate grams and then you’re adding extra fat.

In the end, you’re going to see a high-fat diet that is low in carbohydrates that gives the patient enough protein so that they are growing well and thriving. It doesn’t matter how you cut it up, what diet you’re on, or if you’re mixing a few diets together, which dietitians sometimes do. They will take parts of 1 and customize it for their patients. You could call it a ketogenic diet, just know that you’re probably going to be in ketosis and you’re probably going to have a high fat, low carbohydrate diet. In the end, we all get to the same place.

What does the process look like for evaluating and tailoring a diet to a patient with epilepsy’s needs?

Usually, I get a patient through the physician. We have a team of epileptologists and, in some facilities, we have a team of neurologists. We separate teams for those things. The patient will go to their neurologist first, and then that person will decide the next step in treatment. Sometimes its medication, sometimes its surgery, sometimes it’s an alternate method, which might be the ketogenic diet. It’s discussed at that level first, and then the physician decides that it’s okay for them to go see the keto team.

Sometimes the interest is brought up by the family If there’s intractable epilepsy, medications haven’t been helpful for that patient. If this is the case, you’re automatically a good candidate for the ketogenic diet. That patient would them be put into a keto team clinic appointment. They would then meet the nurse practitioner and myself. These visits are usually done together in the same room. What we’ll do is a variety of things. The nurse practitioner will usually do more of a neurology type visit with the patient. "Remind me what medicines you’re taking? What is your history with seizures?" They might talk about the development of the patient.

We want to know what you’re eating and what your favorite things are to eat. Maybe the patient is tube fed. Tell me what formula you’re on, what your regimen is for tube feeding. “Have you ever been on other formulas that you haven’t tolerated well?” That might give me a clue as to how we can transform your current diet into a ketogenic diet, while keeping some of the favorite things that a patient can tolerate well. If we can keep some of those things, the diet is usually more helpful and successful.

Transcript edited for clarity. For more segments of NeuroVoices, click here.