When Etrudy Mitchell's daughter had her first epileptic seizure at 16 months old, it started off looking like a run of the mill temper tantrum.
"We thought that she was just wanting something that she couldn't have," Mitchell tells host Michel Martin on NPR's Tell Me More. But within moments, the situation took a dramatic turn. "She turned blue. The body turned limp, and we dialed 911."
Ellen Woods had a similar experience when her previously healthy 11-year-old son came in from playing basketball one afternoon and complained of being dizzy. Since her back was turned, she thought the noise she was hearing was him kicking the wall. But when she looked, she found him in the middle of a seizure.
Nearly 1 in 20 children will experience a seizure, Martin points out.
Epilepsy can be terrifying. Once referred to as "the falling sickness," this chronic condition involves abnormal firing in the brain, causing a person to lose motor control. And that can lead to shaking, staring spells, repetitive hand, arm, or mouth movements, or weird noises and incomprehensible words.
Sometimes, it leaves parents wondering whether their child will require lifelong supervision. "We really have very good options to make this chronic disorder very well controlled," says Dr. Imad Najm, an epilepsy specialist at the Cleveland Clinic. Around two-thirds of epileptic patients respond well to at least one of the 18 or so drugs approved to treat the condition, and others benefit from surgery. In the future, devices that deliver electrical pulses to the brain may also be approved as a way of decreasing seizures.
The past couple years have also seen great progress in explaining the disease.
That first seizure can still be a horrific sight for an unprepared parent, but Woods says it gets less scary over time.
The goal of parents whose children have epilepsy, Mitchell adds, is to minimize their own fears and instill their children with confidence, independence, and as normal and full a life as possible.
Both parents discuss the importance of having a family emergency plan. Also, they say it's vital that everyone who cares for a child with epilepsy, no matter how briefly, be aware of the condition and prepared to monitor a seizure or call emergency services if necessary.
Woods says her son, who is now 16, does have some rules that are different from his peers. He's not allowed to play football, because the risk of a brain injury is too high to tolerate.
But like his friends, he is learning to drive. Along with that, he's responsible for knowing what could trigger a seizure, including sleep deprivation and dehydration, and making responsible choices about when to get behind the wheel.
So while children and teens with epilepsy experience limitations, they are not relegated to a life of dependence. "They're gonna be able to live their life, but it's a life that is lived with moderation," Najm says.
MICHEL MARTIN, HOST:
I'm Michel Martin and this is TELL ME MORE from NPR News. They say it takes a village to raise a child, but maybe you just need a few moms in your corner. Every week, we check in with a diverse group of parents for their common sense and savvy advice.
Today, we want to return to our occasional series on chronic health conditions, specifically, how those conditions affect children and families. This week, we want to talk about seizures. Watching your child have a seizure, which can cause him or her to convulse, not respond or even turn blue, can be terrifying.
But seizures may be more common than many people think. Researchers estimate that nearly one in 20 people will have at least one seizure in their lives, and those episodes are more likely to happen in childhood - that, according to Children's Hospital, Boston.
We wanted to talk more about the experiences of children who suffer from seizures. We wanted to hear how their parents manage the situation. We'd also like to hear what friends and neighbors and other interested people can do to be helpful. So, we're joined, now, by Dr. Imad Najim. He is director of the Cleveland Clinic's Epilepsy Center.
Etrudy Mitchell lives in Atlanta. Her 14 year old daughter has epilepsy. Ellen Woods has a 16 year old son with epilepsy. She also works for the Epilepsy Foundation, which provides support and promotes research around the condition.
I welcome you all and I thank you all so much for speaking with us.
DR. IMAD NAJM: Thanks for having me.
ELLEN WOODS: Thank you.
MARTIN: Dr. Najim, I'm going to start with you. What would cause a seizure in a child and what would that commonly look like?
NAJM: Well, there are multiple causes that will make the brain fire in an uncontrollable manner, what we call electrical storms, and therefore lead to a person - a child in particular - to have a seizure. Now, seizures, they may look in various ways. There is a common saying that, always, we try to remind ourselves of, that not everything that shakes is epilepsy. And epilepsy is not always manifested by shaking.
MARTIN: Important point. Important point. So what is epilepsy? I think there's still a lot of mythologies around epilepsy. I mean, it's just one of those things that, you know, some people feel that, you know, you've been possessed by the devil or something like that. You hear all kinds of myths. So what is epilepsy?
NAJM: Well, epilepsy is a chronic condition, unfortunately, that is mainly characterized by repetitive behavior or events. These events could be shaking, could be, sometime, staring spells. Sometime, it could be making rather inappropriate movements of both arms, hands, mouth - sometime coming up with some weird noises or some type of verbal words that are incomprehensible.
MARTIN: So I'm going to go to our two parents here, because – two other parents here – because they both have had experience with this. Etrudy, I'll start with you because your daughter was a baby when she first had a seizure. What was that like?
ETRUDY MITCHELL: It was very scary. Imani(ph) was 16 months old when she had her first seizure. We thought that she was just wanting something that she couldn't have. She turned blue. The body went limp and we dialed 911. And she's 14 now and, as she has developed, she has gone through different phases of what we would call seizures.
MARTIN: And Ellen, your son had his first seizure when he was 11. Could you tell us what happened?
WOODS: Yes. He is a typically developing child who had no health problems and came in one day after playing basketball and said, I feel very dizzy. And, all of a sudden, I heard some noise and I thought he was kicking the wall and I turned around to find that he was having what the public would call just a grand mal seizure, a tonic-clonic seizure. His limbs were all shaking, he was vomiting, his head was moving and he was beginning to turn blue.
And so I think, like anybody having seen a seizure for the first time, knew it was a seizure, but certainly didn't know what to do.
MARTIN: What did you do?
WOODS: I called 911, very similar to what you just heard, knowing that I needed to get medical help along the way, but also I was unaware of the postictal period where he turned blue and was lifeless. So because he stopped breathing, I performed CPR until the ambulance came.
MARTIN: That has to be - let me just stop you just for a second - that has to be terrifying. You must feel so, you know, helpless. Does experience help over time? Etrudy, I'll start with you. Over time does it get less scary?
MITCHELL: It does get less scary. You put in place procedures to handle everything. You put in place family members to be able to manage. You put things in place and the educational realm to be able to manage so that if you get a call in the middle of the day you don't panic.
Over the years, we've been very successful in implementing certain procedures in order for our lives to be as normal as possible.
MARTIN: Ellen, what about it? Does it get less scary over time?
WOODS: I think it does get less scary. I think the good word of putting in procedures is probably very accurate.
MARTIN: Like what?
WOODS: Well, it affects every part of their life. It affects - you have to tell anybody who they would be cared for that they have a medical problem, that they have epilepsy, that they may have a seizure. It can affect their academics. So you have all aspects of their life to manage: safety, social life, sports, school. All decisions kind of have to be carefully thought out. And I think getting educated about how to treat a seizure, educating the people around you, educating the schools.
MARTIN: Well, let me just, help me out here. And I don't want this to be a pity party, but I would like to know, because I know I'm sure that's not what you want either. But I would like to know, like what is the hardest part of it. And Ellen, why don't you start? Is it that you just don't know when it's coming and you could be in the middle of having a fine time, then all of a sudden it just comes on? Is that the hardest part?
WOODS: I think that's probably the hardest, but also I think it's trying to keep things as normal as possible. I think trying to look to say, what's the best case scenario? How do you empower that child? And how do you move forward and not become panic - not become a victim? So I think I agree, not knowing I think is hard, but I think also not knowing whether or not that will ever get worse. And I think the comment made about it kind of morphs itself over time, makes it a moving target.
MARTIN: If you're just joining us, you're listening to TELL ME MORE from NPR News. This week in our parenting roundtable we are talking about how families manage with seizures, especially those caused by epilepsy.
My guests are Etrudy Mitchell and Ellen Woods. They're both raising teenagers who have seizures connected with epilepsy. We're also joined by Dr. Imad Najm, who directs the Cleveland Clinic's Epilepsy Center.
Dr. Najm, what do you do if someone is having a seizure? Is there anything, is there a protocol that you should be prepared to follow?
NAJM: It is very important that we always remind ourselves about the basic principles of dealing with a medical emergency in front of us. And this applies definitely in cases of grand mal seizures, which is to remember the acronym ABC, which is make sure the airway - it means the person is breathing A, and basically the person is the B, for breathing and C for circulation, that still we have heart beating.
It's very important. And one indication of the problem with breathing and respiration is when the child in front of us or any person is having a big grand mal seizure, they become blue and what we call (unintelligible). So these are situation where we start feeling or seeing any problems breathing. It becomes a much more acute emergency that we need to deal with it at a professional level and appropriate call for 911 should be made.
MARTIN: You know, Dr. Najm, back in the day, you know, there was this business where you should like put something between the jaws to keep the jaws open. Is that another one of those myths that should go out with salt and a sock? That's just a made-up story. That's not something you should - you don't need to force something between the person's teeth or jaws or something like that.
NAJM: It is very dangerous thing to do with both the person who's trying to force things between the teeth and the jaw and for the patient and the child in front of us was having the grand mal seizure. It's very important to make sure we observe. We make sure the child is breathing. And whenever we start worrying about a shallow breathing or anything that turns into changing color in the face is to make sure that we get appropriate help without trying to force anything.
MARTIN: Well, what - is there a treatment?
NAJM: We do have around 17 or 18 medications that are approved for the use in patients with epilepsy. The good news is around two-third of the patients with epilepsy they do respond to one, two, or three antiepileptic medications. The biggest problem here we have is with patients who do not respond. And some of the patients who fail these antiepileptic medications, we try to find out if surgery is an option.
MARTIN: You know, Ellen, what has worked for you? And I don't want to obviously tell all of your son's business, because I'm not sure - he's 16 now and would not appreciate that. But I would imagine that having seizures when you get to the age where you want to drive can be pretty challenging. So what has worked in your family?
WOODS: I think what's worked is medication. It didn't work initially. We tried three different medications before we found one that actually was effective. So that's helped. Making sure that they're not sleep deprived, because that lowers the seizure threshold. If you're dehydrated it lowers your seizure threshold. It really is a time of looking for more independence, so a teenager is looking to be very socially active and they push the limits of their sleep. They're up late at night. They may be excelling in sports and, you know, pressing themselves very hard that way. So I think it's putting all of those things in place, adhering to a medication regime and not missing medications is extremely important for someone with epilepsy.
MARTIN: How do you avoid having your son feel fragile?
WOODS: I think you make them accountable to know what medications they take, what their condition is, what the triggers are, and make them responsible. And I think you try really hard as a parent not to be fearful. I've taken the approach that he'll live a full and normal life. And I think epilepsy runs the spectrum, it can be very severe to very mild. And I think the hardest thing is to limit them. So I've taken the approach of I allow him to do things that I think - I mean he's not going to play football - but you avoid things where head injury could be a problem because head injury is a very common cause of epilepsy.
MARTIN: Etrudy, what about you? What are some of the things that have worked for your family in helping your daughter, and you and your family cope with this?
MITCHELL: Well, we've put in some procedures also and some accountability also. And one of the things that I try not to do is instill my fear of what if for my daughter. She plays sports. She participates in school. I think moms put a little bit more fear in it and you have to be able to pull back those - your own personal fears and let them go out there and shoot for the stars. My family has always, you know, we've had to redirect grandparents to not be so fearful of her doing things. And everyone in her life, you know, let her try, let her attempt. And on those days when we don't have good days and seizures come up, we try to have our postictal time and get back in the game as quickly as possible.
MARTIN: Can I ask you this though, and Etrudy, if, you know, presumably, you know, there are play dates. Your daughter is at the age where she's probably just out of the play date stage but, you know, play dates and things like that, so what do you do? Do you insist that play dates be at your house? And let's say there's a bystander, a sympathetic bystander or a friend who just happens to be there when a seizure is happening? What should they do?
MITCHELL: Well, if we are absent - my husband and I - from the scene, we've always prepared those who have taken care of our daughter. We've always prepared them for that. We'd never leave our daughter in a situation where someone can't prepare for it or at least dial 911. But if it does happen, if we are with friends or family and our daughter has a seizure episode, we've tried our best to educate. I think everyone in our family has a package from Georgia Epilepsy Foundation. We've been on top of that of educating everyone, making sure we can explain things of what exactly is happening during a seizure session, and then we try to go on and make the best of that time.
MARTIN: So Dr. Najm, final thought from you. If someone is listening who has perhaps just experienced this for the first time, scared about the future, thinks gosh, my child is never going to be able to drive or play sports, or go to the prom and I don't know, I just don't know what I'm going to do. Do you have some advice or thought for this person?
NAJM: Absolutely. I think the first thing we have to remember that we really have very good options to make this chronic disorder very well controlled. So that is something we have to remember, the majority of the patients who suffer from epilepsy we are going to find a way to control their seizures. That is I think the most important part of taking care of this particular disorder. Now the second thing we have to remember and this is basically built on what we just heard, the fact that we're going to have to remember that our child and our children when they're growing up they're going to grow up with the disorder that is not going to make them dependent all their lives. We have to remind ourselves and remind our children that, you know, they're going to be able to live their life, but it's a life that is lived with moderation.
MARTIN: All right. Well, that's good advice for all of us, isn't it? Etrudy Mitchell, Etrudy Mitchell, what's your word of wisdom for people who perhaps are just starting on this journey that you've been on for quite a long time?
MITCHELL: Well, one of the things I think is beyond the safety measures in taking your medicine on time and getting your sleep is, you know, make sure you love them. Love them as if they didn't have epilepsy. Make sure you make no difference between them and their peers. And I think one of the biggest things with our daughter is, you know, we've loved her through the epilepsy, the good, the bad, the indifferent, and I think that's made a big difference in our family.
MARTIN: Ellen, what final thought for you? And I'm going to push you on that driving question. Can he drive?
WOODS: He's just starting to learn.
(SOUNDBITE OF LAUGHTER)
MARTIN: Well, we're scared because he's a boy, a 16-year-old boy, a teenaged boy, and set everything else aside. OK. Let us know how that goes. So what's your final word of wisdom?
WOODS: Mine would be reach out. Utilize all the resources available. Get as educated as you can about it. Look for the best. Expect the best. You can't live in fear of that. I think you put it all the necessary precautions, procedures. Moderation is the key to everything. And above all, don't whisper the word - that it's epilepsy is nothing to be whispering about or be ashamed of. It's not different than diabetes or other chronic conditions, and I think that's the most helpful thing people can do.
MARTIN: Ellen Woods works with the Epilepsy Foundation, which is based in Maryland. She was kind enough to join us here in our studios in Washington, D.C. Etrudy Mitchell was with us from member station WABE in Atlanta. And Dr. Imad Najm is the director of the Cleveland Clinic's Epilepsy Center. And he was with us from member station WCPN in Cleveland. I thank you all so much for speaking with us today.
WOODS: Thank you.
MITCHELL: Thank you.
NAJM: Thank you.
MARTIN: And that's our program for today. I'm Michel Martin and you've been listening to TELL ME MORE from NPR News. Let's talk more tomorrow. Transcript provided by NPR, Copyright NPR.