I'm Kelly Cervantes, and this is Seizing Life, a weekly podcast produced by Citizens United for Research in Epilepsy, CURE. [MUSIC] On today's episode, we are joined by Robyn
Blackford and Breanne Fisher from Ann & Robert H. Lurie Children's Hospital of Chicago. Both work in the hospital's Epilepsy Center
where they advise patients on the use of the ketogenic diet as a treatment for seizures. Robyn is a registered dietician, while Breanne
is an advanced practice nurse. As medical professionals, they work together
to monitor patients' vitals and ensure they use the ketogenic diet safely.

Robyn, Breanne, thank you so much for coming
and joining us today to talk all things ketogenic diet. Thanks for having us. Thank you for having us. Of course. I think most people understand a general-level
ketogenic diet is high fats and low sugars. What does it mean more specifically than that? There is a classic ketogenic diet, and then
there's the modified version of the ketogenic diet. I think what the definition of a classic ketogenic
diet would be is the amount of fat to non-fat that is in that diet. What you're doing is calculating ratios of
a ketogenic diet, so that the ratio of fat grams to the ratio of grams of protein and
carbohydrate when added together, create this dose, in regard to the diet. The modified version of a ketogenic diet is
a high-fat, low-carbohydrate diet where you do some carbohydrate counting so that you
keep your diet within a certain amount of carbohydrate grams that still puts your body
into ketosis, which is why we call it a ketogenic diet.

It doesn't matter how you get there, in terms
of the amount of fat to non-fat or carbohydrate in your diet. Each diet is going to get you to the same
point. And that is being in ketosis and burning fat
for energy instead of burning carbohydrate for energy, which is what our bodies normally
do. When you eat enough fat in your diet and take
down the amount of carbohydrate, then your body will be forced to burn fat for energy
instead. Which is why it can be used as a weight-loss
diet as well. I can't tell you how many times I've seen
people on Facebook talk about their ketogenic diet that they're doing for weight loss, and
my head starts spinning because I think of how much work we did for Adelaide when she
was on the ketogenic diet.

What is the difference there? Is it the extremity of it from one to the
next? What is the difference between me just wanting
to lose weight and doing a ketogenic diet versus Adelaide using it as essentially a
prescription treatment? It is kind of a step in that direction. It's kind of the gold standard for treating
seizures when it comes to diet therapy. With the amount of fat to non-fat, the higher
the ratio, the more potent the diet. I think of it as if you are taking a certain
dose of a medication, and you start at the lowest dose.

That would be like a ketogenic diet at a lower
ratio of fat to non-fat. So less fat, a little bit more carbohydrate,
then the higher the ratio you get would be like the dose of your medicine increasing. We certainly have people who are on a ketogenic
diet and don't calculate ratios, but they're counting grams of carbohydrate. That kind of a diet could be a weight-loss
diet or even a diet that could be treating some other disease. In terms of treating seizures and people with
epilepsy, we do like to do a classic ketogenic diet, which is where you weigh everything
on a gram scale. For those who are familiar with doing those
things, you go into the hospital for a 4-day admission, and you work your way up to that
dose of the diet. When your body finally goes into ketosis,
that's when we find it the most therapeutic.

Where people with seizures could have some
kind of reduction in their seizures, or have some seizure control, is when they're in ketosis. You bring up something that I think is a slightly
common misunderstanding. You mentioned that, when an epilepsy patient
gets started on the ketogenic diet, they're going into the hospital to do it. That's a big deal because you're essentially
changing the way your body burns energy, or you're changing the chemistry in the brain. Why do we have to go into the hospital? What, exactly, are the risks? What are you monitoring when the patient is
in the hospital? There are many side effects to the classic
ketogenic diet, as well as a ketogenic diet that somebody would use for weight loss. Part of the reason why we do the admission
is to make sure that somebody tolerates going into ketosis. Not everybody will tolerate becoming ketotic,
so we monitor that throughout their hospital stay, and even after they go home on the ketogenic
diet. The patients that we start on the ketogenic
diet, we do have frequent follow-ups, and follow-up on lab work as well as educating
the parents about what to look for with regard to side effects.

The main things that we look for in both their
blood work, as well as what families report to us, is that the ketogenic diet can cause
an acidosis in the body. If the carbon dioxide level goes low, somebody
might not feel very well. They might have an upset stomach, with some
spitting up or vomiting. Then it does put somebody at an increased
risk for developing kidney stones, which is one of the things that we monitor very closely
on the ketogenic diet. We also monitor something called carnitine,
which is found naturally in the body. The diet can cause a decrease in carnitine
levels, which help with energy. We often have to supplement with Carnitor
when somebody is on the ketogenic diet. We also monitor cholesterol and triglycerides
because of it being so high in fat.

Our patients generally do very well with the
cholesterol and triglycerides. You generally see an initial increase, but
then those numbers level off. These are all things that we monitor very
routinely for our patients who we put on the ketogenic diet. I don't think these are always monitored very
closely for people who are just putting themselves on the diet for weight loss. How often do you advise patients that they
should be going in and meeting with the dietician and the APN? We have patients come and see us one month
after starting the diet, and then every three months until they're stable on the diet. And we're getting lab work done at all of
those appointments. Adelaide was barely eating by mouth. Essentially, we mixed baby food and butter
together. For someone who is eating consistencies beyond
pureed blends, what does a typical ketogenic meal recipe look like? In a classic ketogenic diet, that ratio of
fat to non-fat is more important. We can actually use any food that a child
likes in order to create that right ratio. Even if it is oatmeal in the morning for your
child, then that amount of oatmeal is weighed on a gram scale according to recipes that
the dietician gives them, and then we match the carbohydrate and protein amount in there
with the fat source.

Everything would be paired to the fat source. When you're talking about that, just to clarify,
a lot of the time it's like a 3:1 or a 4:1 ratio. So, you're talking about 3 units of fat for
every unit of carb? Right, carb and protein added together. Okay. Then, in a modified ketogenic diet, it might
look a little bit more like eggs and bacon, sausage, with butter and cream on the side,
just making enough calories so that the person eating it has enough to eat and isn't hungry. You're talking, just to clarify, straight
butter and straight cream that are just being consumed. I just want to make sure that people understand
that, that you can have a tray and it's like mayonnaise, or… Yeah, yeah.
� or just oil, and that you're just eating that straight as it is, like you don't have
to put it on bread and then eat it with your bread.

It's like, here's some butter. You can. You're mixing it in your eggs, or you are
eating it as a side. What's nice about kids is they kind of eat
whatever you give them, to a degree. I know there are limits to that, even in my
own home, but they tend to really like their ketogenic diet, so you find the right foods
that they really like. If they are good salad eaters, then maybe
that is lunch. You have a Cobb salad kind of a lunch for
them. Then your fat source can be an oil dressing. A lot of kids are used to drinking milk, so
we just flip that and they start drinking cream instead of their milk. So it becomes their new keto milk, or some
families just call it milk, and they know that they're giving them cream. It's still an 80-90% fat diet, regardless
if you're using a classic ketogenic diet and weighing it on the gram scale or using a modified
ketogenic diet where you're carb counting and adding extra fat.

I'm remembering it was important that Adelaide
eat the entire meal. It wasn't just like you eat until you're full. Because everything is measured out, you really
have to eat everything that's on that plate. Right. We're using grams worth of food, so you have
to consume that many grams of that fat, that carbohydrate, that protein to make sure that
your dose of the diet is correct, and that's what you're ingesting. If you're on a 3:1 ketogenic ratio, you have
to eat your entire meal. The good news is you get more bang for your
buck with the fat, so your portion sizes can be a bit smaller. It really fools your eye because you're looking
at food and you're not thinking that that amount of fat has that many calories in it,
but it really does. It takes up a lot of the calories that a person
would eat, so you're really satisfied because you're eating those same number of calories
that you're used to eating, but it just looks very different on a plate. Also, for patients who are tube fed, you can
still do the ketogenic diet.

It doesn't have to be on a plate. There are baby food purees that we can use,
and there are ketogenic formulas that are available so we can use that for tube feeds
for patients who are on the diet as well. Hi, this is Brandon from Citizens United for
Research in Epilepsy, or CURE. If you want to know more about advances in
our understanding of diet and epilepsy, tune in to our Epilepsy and Dietary Therapies webinar
on June 13th, at

Are there ready-made meals for patients out
there who are eating by mouth that make it a little easier to manage the diet? Or are you just in there with the recipes
weighing it out and making the food? I think most of the time that's what our families
are doing. I'm not aware of too many places where they
can get ready-made ketogenic meals that are according to their ratio and the number of
calories that they need.

It's so very specific for each individual
patient. They'd probably have more luck if they were
on a modified version of the diet while still knowing how many grams of fat and protein
and carbohydrate are in each thing because they're counting those things on a daily basis
anyway. So, they could probably use those resources. Just because they go to the grocery store
and the label says 'keto friendly', that does not mean that when you're on the prescription
diet at a specific ratio that is something you can use that is more for the modified
version? Right, right, right. One of the benefits of the ketogenic diet
being so popular right now for weight loss is that there are a lot of products being
created that somebody on the classic ketogenic diet can't go to the store or order them online
and just eat them. They still need to be calculated as part of
the meal plan. There are at least options to incorporate
some other How do you know when someone is in ketosis? Ketone bodies can be checked through blood
and through urine, so, whenever patients come in to see us in the ketogenic diet clinic,
we will get their blood beta-hydroxybutyrate to see what the ketone level is in their blood.

Routinely at home, they can check their urine
for ketones. That's what we have them routinely check and
report to us. Of course, it's more important for patients
to find their level of seizure control than where their ketones are at, even though that
is our therapeutic marker of how we know that a patient is on the ketogenic diet. There are some patients who don't go into
ketosis who still have some seizure control.

The only way we know how to prove that a patient
is on the diet is by checking their urine ketones. Since seizure control is a priority, then
we'll check and see if they're in a certain level of ketosis to see if it's at a therapeutic
level. I remember we had, when we were in-patient,
a big training session about how to prepare to bring the keto diet home because it is
a lot of work. We got our food scale, and we got all our
menus about how to prepare the food.

What are other ways that you help families
prepare for what they're about to embark on, and what should people know about the diet
in preparing the food, and how all that's going to go? I think it really starts with our initial
clinic. We ask families to come in to be educated
about the diet before they ever get admitted to the hospital. During that clinic visit, they might meet
with a nurse practitioner, a dietician, and then a social worker. We really discuss what the diet looks like
at home, and the barriers to the diet at home so that families can really start to get things
in order to be prepared for the diet, even before their admission. Then, when they get admitted to the hospital,
they have very intense education with the dieticians. During the admission, we have it set up where
we have certain topics that we would talk about every single day. The dietician is part of the medical team
that's in-patient, and then that person would go and meet with the family and do all the
nutrition education that's required before discharge.

They're not only doing all the education with
the families and giving hand-outs and going through every single menu and gram of food
that the child is eating. They're also thinking about once the family
goes home, and how to set them up to be the most successful in doing that at home because
this is not an easy diet to do at home. I think that it is helpful that they're thinking
about it ahead of time. They know what to expect once they're in the
hospital, and then we are helping them overcome any of those barriers once they go home, the
things that they are most fearful of doing. We also have a social worker who works with
our team as well. She is more than just a case manager and trying
to get stuff for home, but also meets with families to see what it is that we can be
most helpful in doing when families are ready to go home on the diet. That could be a variety of things. Maybe there are families that have more than
one child, so they have to think about others when they're feeding their own keto kid.

Maybe how to manage school issues along with
the diet. Birthday parties or any kind of family event
that's also going on, where they have to weigh all their food on a gram scale and take all
their food with them. How do you handle all those things? Our social worker is helpful as part of our
multidisciplinary team to be able to overcome some of those barriers.

It can be a lot of work. It is a huge change, but, if it works, I mean,
it's worth it. Let's talk about that. What is the success rate? How often do you see this work? In all of the published literature since the
1920s, we see that the success rate of the diet is anywhere between 50-75% helpful for
seizure control for all of the studies taken together. I think that, even when you try one medicine
and a second medicine and a third medicine, that the percentages of seizure control and
success with those additional medicines decrease and decrease and decrease. You will not see the same thing happen with
a ketogenic diet. You will see that same 50-75% success rate. Regardless of where you try it in your treatment
plan? Right, right. I imagine it's probably more common for people
to come in to start the diet who are already on meds. Do you see people come off their meds? Have you seen people get full seizure freedom? Absolutely both. The best-case scenario is that somebody comes
in and wants to start the ketogenic diet, we put them on the diet, and they become seizure-free
and are able to wean off their medications.

We'd leave them on the diet for about 2 years,
check an EEG, and then wean them off the diet and have them go on and have a normal life
without seizures. Certainly, more often than not, it's somebody
comes in and they start the diet, and they've had either complete seizure control, or at
least a good reduction in seizures, and are able to be on less medication than they were
on previously. Are there certain types of seizures, or certain
ideologies for epilepsy, be it genetic or brain malformation or post-traumatic epilepsy
that you have seen, either clinically or in research studies, against which the ketogenic
diet can be more useful or more effective? With research, we are continuing to learn
more about specific ideologies that the diet can be helpful for. For certain genetic conditions such as GLUT1
deficiency or pyruvate dehydrogenase deficiency, we automatically put those patients on the
ketogenic diet. We find it to be very helpful for patients
who have MAE, otherwise known as Doose Syndrome.

We put those patients on the diet, generally
very early on in their epilepsy course, as well as patients with infantile spasms, we
tend to put them on early on in their course. Otherwise, anybody who's really failed two
or more medications is considered a good candidate for the diet. How long do you recommend typically that someone
stay on the diet? Can you be on the diet for too long? How does that work? It really is all dependent on how useful it
is for a patient. If we put somebody on the diet and they're
doing very well from a seizure perspective, and they're tolerating the diet without side
effects, we can have them stay on it for years. We've had patients on the diet for more than
10 years, as long as we feel that it's still helpful for them. On the opposite side, if we put somebody on
the diet and we're really not feeling that it's helpful for them, or that they are having
side effects, we try to get them back off the diet as quickly as possible, even within
a few months of starting.

How does that look, to come off the diet? I remember we sort of weaned Adelaide off,
similar to how we would to a pharmaceutical med, because it is still a chemical reaction
that you are altering in the brain. Talk to us about what that weaning process
looks like. It can be different for everyone, especially
if a patient is having severe side effects of the diet, then we might want to wean the
diet more quickly. There's no hard and fast rule about weaning,
even in all of our consensus across the world when it comes to diet therapy. It could be slow, or it could be fast. There are some patients who might want to
stay on it a little bit longer and have a longer weaning process, especially if the
diet has been very helpful for them.

Since we're kind of testing the waters, it's
also like reducing a medicine. What is it really controlling? When we come down off that therapy, what's
behind that door? We might go slowly to kind of see how the
patient responds to being off the diet. On the science-y side of it, how does it work? Why is this diet, why does being in ketosis,
control seizures in some people? I think that's the million-dollar question. Million-dollar question. We don't really know exactly how it works. We have a lot of scientists working on this
all of the time.

There's a lot of research going into the ketogenic
diet, and I think it comes back to the brain. It comes back to epilepsy, and that we don't
yet have a cure for these things. So you have this therapy that you know is
helping with symptoms of having epilepsy, and that is the seizures. But we also don't know how that is working. We can't predict who's going to be a good
candidate for the diet, and who is going to be a responder. We have some good ideas, but we are not 100%
accurate on it every time. Epilepsy could be genetic, or it could be
inflammatory. Some of these things might be things that
can be a target for the ketogenic diet, where you lower blood glucose.

Maybe just stabilizing blood glucose could
be helpful for seizure control. Maybe working on the hormones of the body,
and sleep helps with seizure control. Some of those things that would trigger seizures,
we think the diet kind of works with those things to make those symptoms of epilepsy
a little bit better. There could be one aspect of the diet that
is controlling seizures for one person, and then it's a different effect of the diet that
is helping another person? There's just no way to really know. Absolutely. And having so many different seizure types,
too. There are different seizure types where it
might work well but not for others. For every individual, it's so different and
hard to predict. It's a personal and hard-to-predict disease,
so that sort of falls in line. Breanne, Robyn, thank you so much for coming
and teaching us all about the ketogenic diet. We appreciate your time so much, and everything
that you guys are doing for all the kiddos out there.

Thanks. Thanks Kelly. Thank you. Thank you again, Robyn and Breanne, for exploring
how the keto diet works for patients with epilepsy. If you want to learn more about the ketogenic
diet, then check out the articles in the CURE news section, at There you will find topics on the ketogenic
diet and other research projects from researchers around the world who are working on finding
a cure for epilepsy. [MUSIC].

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