Quality of Life for the Epileptic [Interview][Transcript]

dr_ahmed_abdelmoity_vns_therapyGuest: Dr. Ahmed Abdelmoity
Presenter: Neal Howard
Guest Bio: Dr. Ahmed Abdelmoity currently serves as Associate director, division of Neurology, Section Chief of epilepsy and neurophysiology at Children’s Mercy Hospital. He is also the Director of Children’s Mercy Hospital’s level 4 epilepsy center, which is one of the few level 4 pediatric epilepsy centers in the country. He has developed and is directing the clinical Neurophysiology Fellowship at Children’s Mercy Hospital. He has also developed and is directing the Neurodiagnostic Program. He finished his medical degree at Cairo University in Egypt. Dr. Abdelmoity then started molecular neurobiology research at UT Southwestern at Dallas, where he later started his pediatric Neurology residency.

Segment overview: Dr. Ahmed Abdelmoity, MD, Director of Children’s Mercy Hospital’s level 4 epilepsy center, discusses quality of life, treatment options, and compares the different therapies available, for those living with epilepsy.

Health Professional Radio – Quality of Life for the Epileptic

Neal Howard: Hello and welcome to Health Professional Radio, I’m your host Neal Howard, thank you for joining us today. It’s November and that means Epilepsy Awareness Month, our guest in studio is returning to talk with us, Dr. Ahmed Abdelmoity, Director of Children’s Mercy Hospital Level 4 Epilepsy Center in Kansas City, Missouri and he is returning to talk with us about some quality of life issues as they relate to treatment options and comparing some of the different therapies that are available for those that are living with epilepsy. Welcome back to Health Professional Radio, doctor.

Dr. Ahmed Abdelmoity:   Thank you so much. Thanks for having me again.

N: Thank you. Thank you. November being Epilepsy Awareness Month, is this the first awareness month that you’ve been personally involved in?

A: Oh, I’ve been involved in so many Epilepsy Awareness Months over the years, through either epilepsy walks or awareness, demystifying epilepsy and so, yep, epilepsy is a passion of mine.

N:  You know, many people aren’t as familiar with epilepsy as they may think that they are. Now epilepsy, it involves frequency and types of seizures, am I correct in that?  

A: Yeah, absolutely. You’re absolutely correct in that.

N:  And there are several misconceptions surrounding epilepsy. One of the main ones in discussions that we’ve had before, being a misconception about the quality of life that someone suffering with epilepsy can expect and sometimes and “suffering” may not be the proper word, “living with” might be more appropriate. Talk about some of the quality of life issues that you strive to address when you’re dealing with your patients who have just recently been diagnosed or may have been living with it throughout their life and they’ve now transitioned into a different age group.

A:  Yeah, so epilepsy as we talked last time is not just seizures, so there are a lot of comorbidities or a lot of factors that happen and live with epilepsy. Some of which are related directly to the seizure and the seizure frequency and whatever we can do to lower and minimize that, it directly helps those side effects, but others are co-existing with epilepsy. So, some of the ones that are related directly to the seizures are the seizure injury and those can be falling down, having head bleed, having lacerations, sometimes having fractures, having dislocated joints, increasing healthcare globalization, coming to the hospital more frequently, coming to the emergency department would be inconvenient that they can cause to their family, the cost, the ability to hold the job, staying at school and so forth. Increasing mortality and morbidity, so there is premature death with epilepsy which is something that I make sure my patients are informed about. And it’s not to upset them,  it’s not to depress them but it’s also to make sure that they are well-informed and they understand the full extent of the syndrome or the more seizures that I have or the life seizure, I should say I have, the less likely I am to have the premature death that can be related directly to epilepsy. So on the other co-existence with epilepsy are depression and anxiety, those are happening in some literature, uppers of 50 to 70 percent of patients with epilepsy can have depression and anxiety. Sleep disturbance either inability to fall asleep, or with insomnia and recurrent waking up in the middle of the night, which is not an uncommon thing in patients who are having epilepsy with their EEG and with their electroactivity of the brain are so active that even prevent a natural good quality of sleep but also can be related to some of the side effects of medication that makes the patients sleepy and sleeping most of the time. Other than memory impairment is another coexistence with epilepsy and that supported the epilepsy syndrome, so that are related to the seizures and the epilepsy itself but others can be related to some of the side effects of medication. As you have probably have noticed, I have mentioned side effects to make use a few times now. The side effect of medication itself is part of the epilepsy syndrome or you have number of kidney, liver, bone density problems that can happen with seizure side effects. Some impaired abilities to  obtain education, work, maintain a job, ability to drive if you look at the laws in most states, in the United States, they have some limitations for the number of months before a patient with seizure, a patient with epilepsy, or a patient who has loss of consciousness event can go back and drive. Establishing families, developing and maintaining social relationships. So as you can tell seizure is a part and an important part of epilepsy, but that’s not the only part, every single one of the points that I’ve mentioned becomes part of that patient’s quality of life which makes it directly related to epilepsy which makes it under the umbrella of the epilepsy syndrome.

N:  Well, something like this that has so many different aspects and different layers of causes, treatments, quality of life issues, there must be a myriad of treatments available out there for different types of conditions. Talk about maybe the top three or four that you can compare that would improve greatly the quality of life for someone’s suffering from epilepsy, say across the board from the first couple of years of life into their ‘70s.

A:  So again, studies have shown us over and over again that the first, second, and at sometimes even the third line of treatment has been medication. So, in about two-thirds of the patients were able to get epilepsy better controlled or the seizures better controlled with some improvement of those tactics by medications, one, two, maybe three seizure medication. But that leaves about a third of patients, about 35% of the patients with epilepsy who’s either are not going to be responding and not going to be stopping to those seizure medications. So we take statistics in the United States, with the problems of epilepsy roughly about 0.8 to 1% of population, so we have roughly about 3 to 3.3 million people that in the United States with epilepsy that are across all age groups. It would take the statistics that we have just talked about that I have roughly about 1,900,000 to 1 million people who are refractory or drug-resistant epilepsy which creates a very, very important need to go outside these pharmacological treatments. So, some of the top pharmacological treatments that we have, some of the non-pharmacological treatments that we have are epilepsy surgery. This is a for a very special group of patients, in here the seizures are focal coming out of one focus. We can identify this focus either through imaging, either instructional imaging, or functional imaging, and through EEG, and those are patients who can go to the operating room and potentially do a surgery that would help the seizures. That is a very specific and very specialized subgroup of patients, which leave a bigger majority of the patients out of that 1 million that I’ve just mentioned who have refractory epilepsy who unfortunately, surgery might not be an option for them and in that case, there is no modulation. There are certain devices that can be implanted in the body, they can serve as stimulator. It’s the first approved in the United States to address that and it sends electrical signal to the vagus nerve. We know from the clinical studies that about two-thirds of the patients, their seizures got better by at least 50%. But on top of that, their quality of life has significantly improved. So now on, I’m not just treating seizures, I’m treating the whole epilepsy syndrome, I’m treating the whole patient as a whole. The third type of one of the other types is Ketogenic Diet, which is a very special type of diet high in fat content, low in carbohydrates. And that changes the chemistry of the body, introducing more ketones with beta-hydroxybutyric acid, acetoacetic acid and acetone, those are alternative fields for the brain which helps improve seizures and get seizures better controlled. That last type of modality is more commonly used in pediatric age group, teenagers, and older patients, it’s not as easy to maintain such as strict diet.

N:  A lot of legislature in this recent election surrounded marijuana use in several states, we haven’t in the state that is dealing with medical marijuana or cannabinol, is that the correct term for (crosstalk) is that something that, here in the Commonwealth of Kentucky, two of our learning institutions are experimenting with these oils for pediatric seizures. Could you speak to that just a bit as far as pediatrics and the adults as well using medical marijuana?

A:  Yeah, absolutely. Again, part of the problem which is we have to really identify and address, is that we still have a million people in the United States have drug -resistant epilepsy when they needed treatment beyond the medications they’re taking if their seizures are happening more than one seizure per year despite being on these two or three seizures cases. Some of the things that people had tried to reach out for is, medical marijuana, these are the CBD or the hemp oil, …oil and so forth. There are few issues about, and number one is we’ve got understand, it’s still a chemical, so it’s still almost like a drug. Yes, it’s natural which seems to be very appealing to families and to parents, as all the patients as well, but very little still understood about the mechanism of action, how it affects other medications, which is of another very important thing like we agreed, we look at the patient with epilepsy as a whole. We cannot just isolate seizures and throw everything out. That also, if we look at some of the recent studies that were done that showed that about a third of the patients with epilepsy got to that 50% or better improvement in seizures which if we compare that to a lot of medications, and again, if we just look at the number, pure numbers, we’re going to find out that it’s quite similar to that next medication. So, like we agreed, timing is really a key here. We cannot just keep doing what hasn’t worked with my patients. So, there’s a lot to be understood. We don’t know what the primary kinetics of CBD and hemp oil, yet. We don’t know the proper deals in, we don’t know the long term effect, we don’t is it going to be a honeymoon period? Or a patient’s going to come back to having more seizures, the same number of seizures? Is it better for different types of seizures than others? All those are questions that need some answers before I can simply write a prescription, give it to my patient without knowing the full extent of the other side effects, but the three that are well-established and well-understood and well-studied like I mentioned for small subset of patients that the surgery for another very special group of patient is the Ketogenic Diet. Then, neuromodulation either the RNS or the vagus nerve stimulator, the RNS or I am not just addressing the improvements in seizures like we agreed, two-thirds of the patients’ seizures better by 50% or more which in a lot of cases allows for winning some of the medications off as seizures get better, which is not a promise that I make for the families but it’s a fact that I am able to do with most of my patients after they’re implanted with the device. Improvement in academic performance, alertness, quality sleep, ability to maintain a job, reducing the healthcare cost, so how many times I’m going to the emergency department, how many times being admitted to the hospital because of seizures, how many times I’m visiting my neurologist or my doctor. All of those are things that have been shown to be reduced after the vagus nerve stimulated in the … implanted. What are the things that was not so long ago, published is showing the risk of Sudafed, something we talked about, a couple of times ago. I’m explained there’s an epilepsy in patients with refractory epilepsy and that number got reduced by 67%, two-thirds,  and those who had the vagus nerve stimulator for a couple of weeks. So, not just improving seizures but I’m also saving lives by improving seizure, by improving quality of life. So past that second or third medication for somebody who’s not a resective surgical candidate. In my set, the patient meets those criteria for being as to be implanted that I present the data for their family, letting them understand the improvement in seizures, improvement of quality of life, that lives are risk for pursued after, there’s another study, “Okay, what if I just add another medication or add VNS (vagus nerve stimulator) in a patient who has failed two or more seizure medications?” The numbers are really striking as far as quality of life improvement significantly higher in the VNS group. Not just that, the seizure improvement continue to be cumulative and maintained across the 12 months after the implantation as it was with medication past at second medicine in the likelihood of just having a …for two or three months than going back toward seizure is more likely.

N:  Now, one final question doctor. Where can our listeners go and learn more about epilepsy and the Children’s Mercy Hospital, Level 4 Epilepsy Center?

A:  That’s a really, the question so, a really sources of information is very, very important because as creative the internet is, it can sometimes mislead patients and even healthcare providers. Our website is www.childrenmercyhospital.org and right there you can type the epilepsy center or epilepsy clinic and it will take you to our website which has a lot of information about epilepsy, about treatment, about services that we offer. But in general, Epilepsy Foundation in general is a good place to go to, epilepsy.com has a lot of information about epilepsy. Just make sure that you’ve got a trusted place that has valid information, unbiased information about diagnosis of epilepsy, and treatment of epilepsy, and different treatment options for epilepsy.   

N:  Great. Great. It’s been a pleasure to talking with you today doctor.

A:  Thank you so much Neal. Thank you for having me.

N:  You’ve been listening to Health Professional Radio, I’m your host Neal Howard, in studio with Dr. Ahmed Abdelmoity, Director of Children’s Mercy Hospital for Level 4 Epilepsy Center and he’s been with us discussing some of the treatment options available for those that are living with epilepsy and comparing some of those options as they offer a quality of life improvement across the board.  Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm, and you can subscribe to this podcast on iTunes.