So, then next up is Christy Sports, and she is from Phoenix Children's, and will be talking about dietician. Thank you. All right. Thank you so much. I am pleased to be here to kind of represent dieticians in terms of their role in caring for patients with epilepsy. I don't have any disclosures for my talk, other than I sometimes have the compulsion to wear too many hats when caring for patients with epilepsy, and that's why this session is so important, to really be able to highlight bringing all the necessary providers to the table to wear the hats best suited for them, so that patients get the best experience. My learning objectives, first you really have to understand what the, why dieticians are needed for these patients, so I want to talk a little bit about the nutrition risks for epilepsy patients, also talking about the care coordination complexities for patients that need nutrition support, and briefly talk on the costs and contrast the costs of dieticians as well as the healthcare costs related to malnutrition. I first just briefly want to share one of my favorite illustrations of what dieticians do and don't do. I think a lot of times we get the negative perspective that dieticians are like the food police, and we just yell at people about what they should and shouldn't be eating, and we of course always want to be hoping to inspire these wonderful, positive improvements in our patients, but ultimately at the end of the day I end up doing just a lot of math, so not always very glamorous. So our nutrition risks in patients with epilepsy, we see that they have more nutrient intake and nutrition status issues compared to controls without epilepsy, or if we're looking at reference intakes. There was a really nice review study that looked at 19 different studies looking at pediatrics as well as adults, and they found that patients with epilepsy had just a lot more nutrition issues. A lot of this can be related to comorbidities that we see with epilepsy, like patients with autism. They might have a lot of food selectivity issues, maybe only eating a couple different types of foods, and that's really going to impact their overall nutrition status. And then of course other neurological issues like cerebral palsy or developmental delays that might cause some feeding impairments that overall are going to impact body weight and growth and development. And then when we look at the different therapies we do for patients with epilepsy, including medications, or I'll talk briefly a little bit about ketogenic therapies, we have adverse effects that can happen with that that are ultimately going to reflect back on nutrition status. So things like nausea and vomiting, diarrhea, altered metabolism of vitamins and minerals, of course sedation that can lead to just poor intake, appetite, and weight loss. And part of the role of a dietician is actually looking at drug-nutrient interactions, or if we're talking about the ketogenic diet, what the potential implications can be from that standpoint as well. One example is we know that patients with epilepsy have up to a six times increased risk of bone fracture. There's a number of anti-seizure medications that impair the metabolism of nutrients that are very important for bone health. So things like calcium, vitamin D, phosphorus, and vitamin K as well. And then when we're talking about the ketogenic diet, we also have an issue with potentially reduced bone mineral density as well, likely related to poor nutrient intakes, but also looking at the potential that being in a state of acidosis, which is very common on a ketogenic diet, can also decrease bone mineral density as well. So particularly in some of these populations where we're utilizing medications and ketogenic therapy, they might have an even increased risk there. And so this is why having a dietician involved is so important, because they can analyze the diet, they can look at lab values, they can assess what additional supplementation or adjustments need to happen in order to help to prevent this. There was a really interesting study actually that looked at a number of different vitamin levels in patients with epilepsy, and they found that only 5% of their patients had normal vitamin D levels. 90% were deficient, and 5% had insufficient levels. So vitamin D, I think, is something that we commonly think of as an issue in this patient population, but what they also found that was very interesting is that almost three quarters of their patient also had low vitamin C levels, and 46% had low thiamine levels. So there's a number of different things we need to really be considering and factoring in for this patient population. Do they have higher nutritional needs for certain nutrients because of the epilepsy, because of the medications, or some of the other therapies, and we just don't really have enough research right now to know. The other thing I want to mention is that, again, when we're utilizing multiple therapies like drug therapy and diet therapy for patients, we might have other things that we have to really be monitoring. So carnitine, for instance, is very important for fat oxidation. So when we are on a ketogenic diet, we have a higher need for carnitine, and we know that valproic acid also depletes carnitine levels. So for that particular population, again, very important to be monitoring and making dietary adjustments as appropriate. And then on the flip side of that, when we're thinking, again, about the ketogenic diet and the impact that ketosis has, we don't really know how ketosis might impact seizure medications and their drug levels. There's not a whole lot of research in this space either. We do believe that, based on what we do understand, that ketosis might actually result in changes to drug absorption, transport, and excretion. So there was a review looking at a few different medications, and three of the four studies found that valproic acid actually had significantly lower levels after initiating a ketogenic diet. And then one study noted that there were lower levels of carbamazepine and clobizam, but that was conflicting in some of the other studies that had looked at those as well. And then there was a smaller study that actually looked at modified Atkins therapy, which is not a strict version of the ketogenic diet. So we generally don't see quite as high levels of ketones produced in that version of ketotherapy compared to some more strict versions. But they found that there was a 35% reduction in various drug levels. So there definitely needs to be a lot more space researching this area and why we might see some of these fluctuations. The largest study they looked at didn't see any significant changes in drug levels. So from this individual level, when we look at patients that are on ketogenic therapy, we see they have varying levels of ketones, even if they're on a very similar ketogenic diet. And so it's very likely that this individual metabolism is kind of playing a role in this space as well. But again, more research is needed, but what we need is that collaboration between pharmacy and the neurologist and the dietician to kind of make sure that what changes we might be making isn't maybe negatively impacting something else. And I want to spend a little bit more time kind of addressing malnutrition and seizures, because this is a big piece of what dieticians are going to be involved in, is helping to diagnose and treat malnutrition. And this is a really nice couple of figures and a nice table that I wanted to kind of illustrate here. But we kind of see that malnutrition we know causes metabolism changes from the protein energy metabolism. We obviously have deficiencies in different vitamins and minerals, and then it can impair our immune system. And all of these things are going to negatively impact epilepsy, so kind of lowering that seizure threshold. And then of course what we're doing from the epilepsy standpoint in terms of the different treatments like the ketogenic diet and different medications, the epilepsy itself, and then psychosocial factors can also then contribute to malnutrition and the cycle just kind of continues. This table also is really helpful to kind of look at which medications, anti-seizure medications may influence body weight. Some may be causing more weight loss or weight gain or not having an effect. And when we kind of, again, factor in the ketogenic diet with this, we all are probably aware that keto is very trendy for weight loss. And that is because being in a state of ketosis helps to increase leptin levels in the body. So it's an appetite regulating hormone that suppresses appetite. So when we are, especially in maybe a pediatric situation where we're suppressing appetite, and then if we have things like food selectivity issues, like for a child with autism, we might really start to run into problems with malnutrition really quickly. So having a dietician to be able to address those issues early is very important. I also wanted to kind of touch on malnutrition in refractory status patients. So this is another sub-population that's going to have a lot more issues potentially with malnutrition. So when you're in that situation with refractory status, those patients are on an obviously a number of drips. And so that really minimizes the ability to give any nutrition to those patients. And so that can really quickly cause a lot of problems leading to further malnutrition. And there was a retrospective review that looked at patients that were hospitalized with refractory status. At baseline, 9% of their patients met criteria for malnutrition. And at discharge, 45% met criteria for malnutrition. Of course, they found those that had malnutrition or were at risk for malnutrition had worse outcomes. And they also were in the hospital much longer, so about 82 versus 44 days. So this is a significant problem. Again, having dieticians early in the process as well as when these situations occur is very important. And looking at children with refractory epilepsy, 40% also tend to be malnourished. Many of them have feeding problems and self-feeding issues. And this is also, of course, just kind of illustrating, again, the need for a dietician involvement early in this process. So what's the day of a life of a ketogenic dietician? So in addition to a lot of the responsibilities that I previously discussed about dieticians, we also tend to do a lot of care coordination as it relates to home care companies and schools and discussing care with other health care providers. We did an internal time study with our ketogenic dieticians. And the average was 25% of our time was spent in care coordination, so not face-to-face time. Unfortunately, as dieticians, we can only bill for face-to-face time with a patient. So this can really kind of impact your overall patient load and salaries and so on. So this is just a few things that we end up having to do. I always like to say I have to play detective. I got to try to find the hidden sources of carbohydrates and things, writing letters for families since we're on this special diet, making sure that they're able to get what they need. So these are a few things that we have to address on a regular basis. And like many therapies, nutrition isn't a one-size-fits-all. So meal plans, food lists, or Pinterest recipes are really only going to get families so far when they're making dietary changes. So I just wanted to highlight one particular case that we used and that we had in our clinic that really required this kind of collaborative approach to provide the best care. So I had a 7-year-old female with intractable epilepsy and autism. Her baseline seizures were 5 to 10 a day, and she was on three seizure medicines. We worked to start the classic ketogenic diet for the family, and the next time the mom kind of came into clinic, she was in tears because she couldn't maintain it. She had other siblings in the home. They were giving other higher carb foods or leaving high carb foods out for her daughter to grab, and her cognitive ability was very low, and so she wasn't able to kind of make the changes on her own to identify what food she could and couldn't have. The problem was, or the good thing was, really, that she was seizure-free for the 10 days that she was in ketosis. So we knew that this was something we had to try to implement, but being able to kind of work with the family was really something that we had to kind of do as a collaborative approach. So I ended up doing a lot of counseling with the family to do more of a modified Atkins type approach, though the family education was fairly low, and so they struggled with kind of carb counting. So we tried to make it as simple as possible to just swap out foods. I got our clinical psychologist involved to work with the family as well as the siblings to kind of help to try to get a little bit more support within the family to follow this plan. So we did regular follow-ups. Neurology was very closely following with medications, and overall, she was seizure-free except for when she got into foods she wasn't supposed to have at school or with other family members or if she missed medications, and her average breakthrough was maybe every 6 to 12 months. So we saw significant improvement there. She was on the diet for a number of years and doing well, but it started to be a little bit more difficult as she got older to kind of maintain some of these strict diet adjustments. So neurology started a fourth medication, and she ended up being seizure-free for longer periods of time, even when there were diet deviations. And so we ultimately, after about 8 years of being on like a modified type keto diet, we weaned her to just more of a whole food, minimally processed type diet, and she's continued to have good control with her seizure management with her medications. So to just briefly kind of touch on then comparing and contrasting the costs of having a dietician but also with healthcare costs, we see that malnutrition more than doubles the hospital length of stay and healthcare costs in general. So 9.7 days versus 3.8, and it's a difference of about $38,000. The average dietician salary in the U.S. is just under $70,000. So really we can offset a lot of salary costs with outpatient nutrition billing. Some facilities do inpatient keto initiations to kind of help to achieve some of that billing as well. It is vastly different from state to state. Dieticians are not licensed in every state. In Arizona, particularly where I'm from, we actually don't have licensure for dieticians in our state. So it is going to vary quite a bit, and that would be a whole talk on its own. But overall, dieticians impact on clinical care. We can catch those nutrition concerns early. We can help to improve those outcomes. Again, that malnutrition piece with seizures is so important that really getting dietician involvement early could substantially improve outcomes. And then of course our role is to really help work with the family, the patients, to develop a nutrition plan that considers their individual needs as well as whatever resources they need to help increase compliance. And lastly, their improvement in nutrition status of patients really is going to reduce healthcare costs. So just a few resources. The Charley Foundation is a wonderful resource for anybody that's interested in keto therapies. I often will refer families that are interested in the diet to review the Charley Foundation first. And from the practitioner point of view, this pocket guide is a wonderful resource for your practices that are going to be utilizing ketogenic therapy. It gives a lot of clinical pearls and great information. And I will say I'm very fortunate at Phoenix Children's to have an ever expanding team that really helps to collaborate. We have everybody from IT building wonderful tools for us to be able to identify issues with patients and also pharmacy and our neurologists and psychologists are all critical components of our team.

dietitians

epilepsy

nutritional deficiencies

ketogenic diet

care coordination