Help When Epilepsy Treatment Doesn't Work

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JOHN WHYTE: Welcome, everyone.

I'm Dr. John Whyte.

I'm the Chief Medical Officer

at WebMD.

Today, I want to spend some time

with you talking about

epilepsy, particularly

sudden unexpected death

in epilepsy.

Joining me to help provide

insight are two experts.

Dr. Stephan Schuele; he is chief

of Epilepsy

and Clinical Neurophysiology

in the Department of Neurology

at Northwestern Medicine.

And Tom Stanton;

he's the president of the Danny

Did Foundation.

Gentlemen, thanks for joining

me today.

STEPHAN SCHUELE: Thanks

for having us.

JOHN WHYTE: Stephan,

I want to start off with--

can you provide an overview

for the audience of what we mean

by sudden unexpected death

in epilepsy?

We've heard about sudden death

in heart disease, but what does

it mean when we're talking

about epilepsy?

And do we know the risk factors?

STEPHAN SCHUELE: Very

good question.

Yeah, you know, when we think

about seizures and epilepsy,

we kind of-- everybody

can imagine that you can have

a trauma, or you could drown

from a seizure.

You can be involved

in an accident.

But I think what a lot of people

are not aware of is the fact

that you can actually die

from a seizure itself.

You know, the seizure can be so

strong that you don't wake

up afterwards.

That is, fortunately, extremely

rare and happens, you know, in 1

in 1,000 patients a year.

So if I see 1,000 patients,

it happened in one patient.

But obviously, it happens

in my practice

because I see patients every day

with epilepsy.

It is even more common

in patients who have really

bad epilepsy.

So that's one of the

risk factors.

So patients that are not

controlled on their medications,

the risk goes up.

To keep it in perspective--

most patients with epilepsy

are otherwise healthy.

You know, it affects you

in your best years of

life often.

JOHN WHYTE: That's why advocacy

is so important-- helping

explain to folks with epilepsy

and their caregivers,

what sudden unexpected death

may mean,

as well as the general public.

As you alluded to, there's

some misconceptions.

So, Tom, tell us a little bit

about the mission

and what's your objectives.

TOM STANTON: Sure, thanks, John.

You know, when we started,

unfortunately, it was

after a tragedy

that our family experienced.

My nephew, Danny, had epilepsy,

was diagnosed around the age

of 2.

And like Stephan alluded to,

he was otherwise healthy,

which is oftentimes the case

for people with epilepsy.

He had about four seizures over

the next 2 and 1/2 years that

his parents witnessed.

And they were all during sleep,

which is something that,

you know,

some people aren't even

aware of that seizures can

happen during sleep.

And it's fairly common.

Danny was 4 and 1/2 and he went

to a routine checkup with

his neurologist.

They adjusted his medication

based on weight gain.

And it was 4 days later

that his mom found

him unresponsive.

He had been lost,

and they didn't know why.

It wasn't until the death

certificate was administered

that they saw this term SUDEP.

And it was just this kind

of shocking experience.

Not only did they lose

their son, who they had been

with the day prior,

but they lost it to a risk

that they had never been

counseled about, they had never

heard of.

And so his parents decided they

didn't want that to happen

to other families

and established that Danny Did

Foundation to help

other families avoid

that scenario.

JOHN WHYTE: Thank you, Tom,

for sharing that story

and to his parents as well,

which really helps us to

better advocate.

Tom, where are we kind

of in this landscape

of educating folks,

raising awareness?

Because in some ways,

we want to remind people

that you can have a normal

life, right?

You might have to have

some adjustments.

But then we want to say,

but wait, you have to be

alert to this issue

of sudden unexpected death.

How do you bridge that

and provide good information

for folks?

TOM STANTON: I think for us,

it involves working both sides

of the equation.

So we talk with patients

and caregivers about the fact

that they're being empowered

with this information.

It's given from a place

of power, empowerment and

not fear.

And sometimes patients

or caregivers have to instigate

the discussion so

that the doctor feels that they

have permission to move ahead

with the conversation.

On the flip side, we really

encourage physicians to openly

discuss SUDEP for a variety

of reasons.

One, both the AAN and the AES,

they both recommend disclosure.

There was a 2017 SUDEP guideline

in which they recommend

disclosure for all people

with epilepsy.

Another factor is that patients

and caregivers really desire

to be informed.

JOHN WHYTE: Stephan, what's

your strategy at Northwestern?

How do you approach

these discussions?

Or in some ways, what do you

want viewers and listeners

to hear in terms

of the questions

that they may think

about asking?

STEPHAN SCHUELE: I look at it

in the broad context

of education.

You know, when you have

your patient coming

with the first seizure,

they have--

many of them have questions

which fill a full hour.

And I think that that

is correct, you know?

If I would have

my first seizure, I would have

an hour of questions for you.

So I think if you create

a culture of education

and being open for questions

of your patients,

I think that's probably the most

important aspect to actually

lead into discussing SUDEP

as well.

And then, obviously, education

for ourselves.

My nurses know about SUDEP.

All my residents and fellows

know about SUDEP.

And we have several lectures

a year, which focus on the topic

of SUDEP.

JOHN WHYTE: Tom, Danny Did has

a lot of resources for patients,

for parents, for caregivers.

Tell us about some

of these resources

and how folks can access them.

TOM STANTON: I think

one of the most

important resources

is just to help patients

and caregivers know

the questions to ask

their doctor to help them tailor

their individual risk level.

I think that's really

important in terms of coming up

with a modified treatment plan

is to know where do they fall

on this risk spectrum.

And I think knowing what

those risk factors are.

So Stephan mentioned a few

of them, both of which

impacted my nephew.

Even though he didn't have

a high volume of seizures,

he had convulsive seizures.

They happened during sleep.

So I think just knowing

the questions to ask,

knowing what the risk factors

are, feeling like you have

permission to instigate

the conversation.

And those are all things

that people can learn more about

on our website, which

is dannydid.org.

In that worst case scenario,

John, where someone has lost

someone to SUDEP,

that's another way that we can

support, not the way that we

want to, but offering just

bereavement support to let them

know that they're not alone

in suffering this kind

of horrible loss.

And that there's a community

around this thing

called SUDEP is another way

that we're there for families.

JOHN WHYTE: Well, I wanted

to ask about this concept

of community,

because you're really building

a sense of community.

Tell us about that.

TOM STANTON: Yeah, I think

there's really no disease state

that has achieved progress

without that drive and urgency

that comes from parent advocacy.

And that's really what we were

founded on, is just two parents

that wanted to carry their

son forward.

Epilepsy can be a really

isolating disease.

There's a lot of stigma

around it.

So bringing people together

in environments that allow them

to not only gain information

and resources,

but really to form relationships

and social bonds,

too, is something that's

important to us.

We also have an event that we

co-host called Partners

Against Mortality in Epilepsy,

or PAME.

And it's really focused

on moving forward solutions

around what causes SUDEP?

How can it be prevented.

What kind of research

do we still need to learn more

about it?

And that meeting is really

the only place that we know

of where people have lost

a loved one to SUDEP

can come and talk

with other families

and gain some resources

and support.

JOHN WHYTE: Stephan,

in your mind, what are

the priorities

or the initiatives

that we need over the next year

or 2

in order to reduce the incidence

of SUDEP?

STEPHAN SCHUELE:

For many patients with epilepsy,

understanding what is the

best treatment

and how vital is their treatment

really starts in some way

with understanding what

the worst thing is which can

happen to them.

You know, my patients don't have

pain every morning to take

their medication.

They take their medication so it

gets them through the

day safely.

And I think that knowing

about what they are preventing

with taking their medication I

think is an important aspect

of SUDEP.

You know, I think number two is

we are--

Northwestern is a big

epilepsy center.

We offer epilepsy surgery

for patients.

And we recently realized

that actually the patients who

are successful

undergoing surgery

have reduced risk of dying

from SUDEP than patients who

are not candidates or choose not

to go down that route.

So I think that's another aspect

that there are treatments which

are available, which I think

we want to make

sure patients understand

that they're there.

I think there's a big push

in the epilepsy community

for better seizure detection

and recognition of seizures.

So bed alarms, wrist alarms,

things which can make patients

feel safer and also family

members be quicker in responding

I think is an important aspect

to it.

And then, lastly, is, obviously,

we want to understand

the actual mechanism of SUDEP,

which is more research driven.

What makes someone to stop

breathing or the medication

which can prevent that

from happening

from the flattening of the EEG

and the lack

of respiratory drive

to catch a breath

and come out of it, you know,

which is all what it needs

to get out of there.

I think we are working hard

on understanding

those mechanisms

and maybe have medications

eventually or stimulators

or other devices which can

resuscitate

patients successfully.

JOHN WHYTE: Well, certainly

there is more work to be done,

more research, more awareness.

I want to thank you both

for really leading the charge

in how we raise awareness

of SUDEP

and how we can better manage it.

So thank you both.

STEPHAN SCHUELE: Well, thanks

for having us.

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