• Sometimes, people can be diagnosed with epilepsy after having had just one seizure.
• If you witness someone having a full-body seizure, try to ensure they are lying down on their side, and never stick anything in their mouth.
• It’s important to stay on a prescribed epilepsy treatment unless a doctor advises otherwise.

About 3.5 million people in the United States live with epilepsy, and nearly half a million of those with the condition are children. Although not all cases of epilepsy are considered severe, it’s important to take the condition seriously no matter what. That involves managing and treating the disease to keep seizure activity at bay.

To help better understand severe epilepsy, 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.

There are people who say they or their child has a seizure disorder, but doesn’t have epilepsy. Is there a difference? And if so, what is it?

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 has 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.

What’s the first thing someone should do if they witness another person having a seizure?

No. 1 is to stay calm, and that’s one of the hardest things to tell a person that 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 the seizure, it’s important to see if there are some features that can guide the physician in choosing the right medication or treatment plan. For example, if they have their head deviated to one side, or if one arm is stiffening first, and then they go into a full-body seizure. These 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 just 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 the lungs. If you are concerned that they’re choking or there are any other concerning issues, call 911 immediately.

Should someone write down what they observe during the seizure so they can share it with the doctor?

Yes, if you can. I try to 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.”

Should people write down what they or their child were doing before the seizure? For instance, what they ate, what they were up to, or is that not really relevant for the physician?

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 often isn’t a typical trigger except in cases like patients with Dravet syndrome, for example, where they may have sensitivity to heat or temperature changes.

For someone with a severe form of epilepsy, such as Dravet syndrome, what would be the risks of going off treatment?

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, and 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. Whereas there’s another end of the spectrum where 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 has the best effect on controlling seizures. This doesn’t often happen, but we try, and 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 higher risk for sudden unexpected death in epilepsy [SUDEP].

Is there anything else you’d want people with severe epilepsy to know about living with the condition?

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, and 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 would be created for them. I also believe employers should be more humble and considerate and try to provide opportunities for individuals who have epilepsy.

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