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Managing and Treating Severe Epilepsy
In this video, Dr. Shifteh Sattar discusses strategies for managing severe epilepsy, including treatment options, identifying seizure triggers, and the critical need for support systems to help individuals and families cope with this challenging chronic condition.
00:00:00:00 - 00:00:33:06
Torrey Kim
Welcome, I'm Torrey Kim, managing editor with MyEpilepsyTeam, the largest and fastest-growing social network for people with epilepsy. Today, we're thrilled to host Dr. Shifteh Sattar. Dr. Sattar is the medical director of the Comprehensive Epilepsy Center and the EEG laboratory at Rady Children's Hospital in San Diego. She's also an associate clinical professor of neurosciences and pediatrics at UC San Diego School of Medicine.
00:00:33:09 - 00:00:46:23
Torrey Kim
Welcome, Dr. Sattar. Our first question was about a severe form of epilepsy, such as Dravet syndrome, for people with those severe forms of epilepsy, what would be the risks of going off treatment?
00:00:47:00 - 00:01:28:04
Dr. Sattar
I always say Dravet is a spectrum, so you can have a mild epilepsy syndrome and, or a severe one, and how I’ve described mild because sometimes we do identify the genetic abnormality for Dravet, but and these children can present with seizures or status epilepticus, but then over time, they can, you know, they might have one seizure a year or only when they're ill. Whereas there's another spectrum where they can just have multiple seizures daily and there can be multiple different kinds.
00:01:28:06 - 00:01:55:13
Dr. Sattar
So for those patients, I think there could be different treatment options, but I generally say if you're diagnosed with epilepsy and especially with severe epilepsy syndromes and your child has seizures, then yes, medication should be used, and I think I want to just relay that the physician wants the best for the patient and the parents,
00:01:55:13 - 00:02:24:20
Dr. Sattar
and so obviously, we want to work with the family and try to identify the medication that has the least side effects and has the best effect on controlling the seizures. This doesn't often happen, but we try and I always advise not to come off medication because the risks are more significant, and obviously the more seizures you have, especially if they're generalized tonic clonic, there's a higher risk for sudden unexpected death in epilepsy.
00:02:24:22 - 00:02:36:14
Torrey Kim
There are people who say they or their child has a seizure disorder, but doesn't have epilepsy. So we were kind of confused about this and wanted to know, is there a difference? And if so, what is it?
00:02:36:16 - 00:03:09:13
Dr. Sattar
Yeah, there isn't actually a difference and I don't know why it's always confusing, and what's actually one of the first conversations that I have at my first visits. Generally, when you have two seizures and in the past, we used to say, if they were separated by time, then you would be classified as having epilepsy. The criteria has been revised, so that it's been easier for us to kind of make the diagnosis.
00:03:09:15 - 00:03:32:06
Dr. Sattar
So sometimes you can have one seizure in your life and depending on the diagnostic tests, which are MRI or EEG, and if there are certain findings or abnormalities, we may diagnose you with epilepsy after one seizure, which is the same as a seizure disorder.
00:03:32:08 - 00:03:40:06
Torrey Kim
If someone has never seen their child have a seizure before, what's the first thing that someone should do if their child has a seizure?
00:03:40:08 - 00:04:06:22
Dr. Sattar
Yeah, so when we do our nursing training too, number one is stay calm, and that's one of the hardest things to tell a person that has never seen them. So you will probably be panicked and it's rightfully so. So even if you've seen many, I can tell you in our hospital, we even get nervous, but the key is to stay calm and turn the child to their side or whoever the person is,
00:04:06:22 - 00:04:28:21
Dr. Sattar
it could be an adult. You try to turn them to their side. Don't stick anything in the mouth and try to time it. The most important findings is also that in the beginning, if you're witnessing the seizure to see if there's some features that can guide the physician in choosing the right medication or treatment plan.
00:04:28:23 - 00:04:53:10
Dr. Sattar
And that would be, if they, you know, have their head deviated to one side or one arm is stiffening first, and then they go to a full body. So, and, you know, laying down flat, turning them to side, don't put anything in the mouth is generally they for full-body generalized seizures where their whole body is stiffening and shaking,
00:04:53:12 - 00:05:13:17
Dr. Sattar
but for the other types there are many different types. So if they're like just staring or unresponsive, you just want to make sure they're safe. And if it does progress to the full-body seizure, that you can lay them down and turn them to the other side. We want to make sure that they don't vomit, so that's why the other reason why they're on their side,
00:05:13:17 - 00:05:33:14
Dr. Sattar
so they don't, it doesn't go into the lungs or they aspirate or choke, and so it's very important. If they're already have food in their mouth, then again, we we advise you to turn them to their side and don't stick your finger in the mouth. And if you are concerned that they're choking or there's any issues, you just call 911 immediately.
00:05:33:16 - 00:05:44:05
Torrey Kim
Okay, good to know. And you mentioned, someone kind of writing down what happens during the seizure and observe what happens.
00:05:44:07 - 00:06:09:12
Dr. Sattar
If you can, I try to say, try to remember because writing down is really not what people do, and if you have any experience, it's almost like when people give you the duration of the seizure, that it's almost so far away from the actual timing, and then those kind of errors do occur in the hospital too, so sometimes when we have children on the video, EEG monitoring, and then we go in and the nurse is like, oh, it was three minutes,
00:06:09:12 - 00:06:22:24
Dr. Sattar
I'm like, actually it was 60 seconds. That's okay, you know, not a big deal. So it happens everywhere and that's why, if you can remember, just look at the clock and then when it stops, you can look back and say, oh, it looked like it was three minutes.
00:06:23:01 - 00:06:42:13
Torrey Kim
Okay, and, then in terms of triggering a seizure, should people write down if they can, what they or their child were doing before the seizure, what they ate, what they were up to, or is that not really relevant for the physician?
00:06:42:15 - 00:07:08:11
Dr. Sattar
It's only relevant if you see it as a pattern. There are situations where people say, oh, every time, there's a certain food that they eat, they have it. We don't have any definitive data for food triggers or anything else, but we do know that some people are sensitive to certain things,
00:07:08:11 - 00:07:47:08
Dr. Sattar
and then if you identify that pattern, then yeah. Then obviously we'll say, okay, maybe stay away from that if it is going to be the provoking factor. However, we also often say that the most common trigger is sleep deprivation. And then any of the time, sometimes when you have physiological stress, like if you're sick or some other stressors that are occurring, but typically for most patients with epilepsy, there isn't often a typical trigger except the patients with like Dravet, where they can have sensitivity to heat or temperature.
00:07:47:10 - 00:08:01:19
Torrey Kim
Excellent, and then my final question is, is there anything else you'd like to share that people should know about severe epilepsy, whether it's for those caring for children who have the condition or for adults living with severe epilepsy?
00:08:01:21 - 00:08:30:14
Dr. Sattar
Yeah, well, one of my, my specialty is for epilepsy surgery and focusing on those intractable epilepsy patients, which isn't all, you know, not everyone is a surgical candidate. I just like to say that I feel for them. I think that having severe epilepsy is really hard for the family and the patient, and it's a struggle.
00:08:30:14 - 00:09:05:15
Dr. Sattar
It's an everyday struggle, and it's a chronic disease, and I think people need to realize that. And I think it's important to know that certain intractable seizures, especially if it's specifically motor, is a diagnosis for children for Make-A-Wish. So I just want to know, and I like to refer my severe epilepsy patients, which, you know, meet the criteria to Make-A-Wish during their hard times when they're having a rough year, for example, like the seizures are not controlled or the family is just like kind of overwhelmed.
00:09:05:17 - 00:09:27:15
Dr. Sattar
So I try to do that because it's really important for them to have a special moment, and then, you know, I don't think it's being recognized that it's like a chronic disease that's disabling, just as bad as cancer or diabetes or other diseases. I'm not saying those are not bad, but I'm just saying, I think severe epilepsy can fall on that criteria,
00:09:27:17 - 00:10:01:09
Dr. Sattar
and I would love if there was more support for the families, especially the adults, if they had mechanisms that we had to drive them around, like there was some financial funding somewhere from the government that could kind of accommodate that, and so they can feel more independent. I also feel for the young adults that have intractable epilepsy, and they kind of complete the education. They finish the school transition programs and then there's really nothing for them to do,
00:10:01:11 - 00:10:13:17
Dr. Sattar
and I really hope that somehow there's programs that can kind of make them involved, feel like they're doing something useful in their life, and they're not just stuck at home.
00:10:13:19 - 00:10:34:10
Torrey Kim
Thank you for joining us today, Dr. Sattar. We all appreciate your insights in the best ways to manage life with severe epilepsy. I'm Torrey Kim, managing editor with MyEpilepsyTeam. The information and support doesn't end here. If you have insights to share about severe epilepsy, please join us at MyEpilepsyTeam.com and sign up for free.
00:10:34:12 - 00:10:43:16
Torrey Kim
Remember, you're not alone.
About 2.9 million people in the United States live with epilepsy, and close to half a million of those with the condition are children. Although not all types of epilepsy are considered severe, it’s important to always take the condition seriously. That involves managing and treating the disease to keep seizure activity at bay and knowing what to do when a seizure occurs.
To help better understand severe epilepsy and what to do during a seizure, MyEpilepsyTeam sat down with neurologist Dr. Shifteh Sattar. Dr. Sattar is the director of the Comprehensive Epilepsy Center at Rady Children’s Hospital in San Diego and a clinical professor at the University of California, San Diego School of Medicine.
Her advice can help caregivers of children, adolescents, and adults with epilepsy better understand the condition and, hopefully, help improve their quality of life. If you have additional questions about severe epilepsy, talk to healthcare providers, clinicians, or other care team members.
No. 1 is to stay calm, and that’s one of the hardest things to tell a person who has never seen a seizure before to do, because you will probably be panicked, and rightfully so. Even if you’ve seen many, it’s still easy to get nervous, but the key is to stay calm and turn the person to their side.
Don’t stick anything in their mouth, and try to time how long the seizure lasts.
In the beginning, if you’re witnessing a seizure, it’s important to see if some features can guide the physician in choosing the right medication or treatment plan. For example, you might notice if the person has their head turned to one side or if one arm is stiffening first, and then they go into a full-body seizure. These details will be important to know.
Those are the most important things to know if the person is having a full-body generalized seizure — where their whole body is stiffening and shaking. But there are many different types of seizures.
If someone is just staring or unresponsive, you want to make sure they’re safe. And if it does progress to a full-body seizure, lay them down and turn them to the side to make sure that if they vomit, they don’t choke on it or aspirate it into their lungs. If you are concerned that they’re choking or if there are any other concerning issues, call 911 immediately.
Editor’s note: If the person having the seizure has a rescue medication and you have been trained on how to administer it, consider giving this medication if appropriate.
Yes, if you can. I advise people to try and remember it because people may be very stressed watching someone have a seizure, and they aren’t going to be in the frame of mind to write things down. Even when people try to guesstimate how much time a seizure lasts, it’s usually very different from the actual timing.
Those kinds of errors even occur in the hospital, not just with parents. Sometimes, when we have children on the video when we’re monitoring them, the nurse might say the seizure lasted three minutes, when in actuality, it was 60 seconds. And that’s OK. It’s not a big deal — it happens everywhere. But that’s why, if you can remember, just look at the clock and then when it stops, you can look back and say, “Oh, it looked like it was three minutes.”
It’s relevant if you see it as a pattern. There are situations where people say, “Every time they eat a certain food, they have a seizure,” and we want to know that. But we don’t have any definitive data about food triggers. However, we do know that some people are sensitive to certain things, and if you identify that pattern, then we’ll advise them to maybe stay away from those provoking factors.
We often say that the most common trigger is sleep deprivation. A seizure may also happen when people have physiological stress — for instance, if they’re sick with a cold — but typically, for most patients with epilepsy, there isn’t often a typical trigger except in cases like patients with Dravet syndrome, for example, when they may have sensitivity to heat or temperature changes.
There isn’t actually a difference, and this can be very confusing. One of the first conversations I have at my first visit with families is that generally when you have two seizures — and in the past, we used to say if they were separated by time — then you would be classified as having epilepsy. The criteria have been revised, so it’s been easier for us to make the diagnosis. Sometimes, depending on findings from the diagnostic tests — which are usually magnetic resonance imaging [MRI] or electroencephalogram [EEG] — we may diagnose you with epilepsy after just one seizure, which is the same as a seizure disorder.
I always say Dravet syndrome is a spectrum, so you can have a mild epilepsy syndrome or a severe one. And I describe mild because sometimes, we do identify the genetic abnormality for Dravet. These children can present with seizures or status epilepticus, but over time, they might have one seizure a year or only when they’re ill. There’s another end of the spectrum in which they might experience multiple seizures daily, and there can be multiple different kinds.
For those patients, I think there could be different treatment options, but I generally say if you’re diagnosed with epilepsy — and especially with severe epilepsy syndromes — then medication should be used. The physician wants the best for the patient and the parents. We want to work with the family and try to identify the medication that has the fewest side effects and the best effect on controlling seizures. This doesn’t happen often, but we try. I always advise not to come off medications because the risks are more significant. And the more seizures you have, especially if they’re generalized tonic-clonic, there’s a higher risk for sudden unexpected death in epilepsy [SUDEP].
I want to say I feel for them. I think having epilepsy is really hard for the family and the patient. It’s an everyday struggle, and it’s a chronic disease. I think people need to realize that.
It’s important to know that certain intractable motor seizures qualify as a diagnosis for children for Make-A-Wish. I like to refer my severe epilepsy patients to Make-A-Wish during their hard times or a rough year because it’s really important for them to have a special moment.
I would love it if there were more support for the families. This is especially true for adults with epilepsy, who may need someone to drive them around. It would be amazing if there were some financial funding from the government that could accommodate that so they can feel more independent.
I also feel for young adults who have intractable epilepsy as they complete their education, finish school transition programs, and then sometimes, there’s no way for them to move to the next step in life. I really hope that new programs will be created for them. I also believe employers should be more humble and considerate and try to provide opportunities for individuals who have epilepsy.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 124,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.
Are you or a loved one living with severe epilepsy? Share your experiences or questions in a comment below, or start a conversation on your Activities page.
Shifteh Sattar, M.D.
is the medical director of the Comprehensive Epilepsy Center and the EEG laboratory at Rady Children’s Hospital in San Diego.
Learn more about her here.
Torrey Kim
is a freelance writer with MyHealthTeam.
Learn more about her here.
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