Silent stalker

The world for Lilly Benda and her mother, Karen, has turned upside-down since a severe asthma attack followed by seizures entered their lives  on Lilly?s 12th birthday.By all appearances, Lilly Benda of Hillsboro looks like a healthy, happy 15-year-old girl.

But three years ago, on her 12th birthday, a severe asthma attack, followed by seizures, turned her world upside down.

It was frightening for Lilly and her mother, Karen Benda, who said both of them had no idea what was happening or what to do.

The first incident happened in June 2011, the summer before Lilly?s eighth-grade year at Hillsboro Middle School. While on the baseball field, Lilly had a severe asthma attack and was LifeWatched to Wichita.

?The next day I was released and that night I had a seizure (at home),? she said.

Karen said the seizure came without warning, just like the asthma attack. Lilly was again LifeWatched to Wichita, and this time, she said she was hoping to get the help she needed.

Type of seizure

After months of tests, doctors told Lilly they didn?t think her seizures were caused by epilepsy. Instead, the diagnosis was psychogenic seizures, formerly known as pseudoseizures.

This type of attack is caused by stressful psychological experiences or emotional trauma, but the diagnosis and management are difficult to treat.

?A handful of people didn?t believe these seizures were real,? Karen said, ?and thought Lilly was faking because they were called pseudoseizures.?

Understanding

Karen said it?s important for people to understand that non-epileptic seizures are genuine. These seizures, she said, are not about seeking attention or pretending.

Until doctors can come up with a more accurate prognosis, many of the things Lilly said she likes to do will stay on the back burner?things such as sports and learning to drive a car. Until the seizures are under control, she cannot pursue them.

Among her favorite sports are basketball and baseball. She said she also likes drawing, playing trumpet and music. She also enjoys volunteering at a nursing home, working on toy drives for hospitalized children and helping with the annual Relay for Life.

?I also have a pen pal in Afghanistan,? she said, ?and I want to have a fundraiser to send a care package to a unit in Afghanistan.?

Karen said she has often wondered if the asthma attack had anything to do with the onslaught of the seizures, but doctors don?t believe so.

When the first seizure happened, the doctors couldn?t be sure if it would happen again or not, but Karen said the attacks have been continuous.

?When she does get a seizure, hers are pretty much grand mal,? Karen said.

A grand mal-type episode results in a loss of consciousness and violent muscle contractions.

Terrifying experience

One of the biggest concerns when Lilly is having a seizure is keeping her head and neck from being injured.

She stiffens up and, according to Karen, there?s not a lot she or anyone can do?except hold her head.

?I will black out and feel paralyzed and can?t get anyone?s attention,? Lilly said. ?It?s frightening for me not knowing if I will have a concussion, broken bones or even worse, be paralyzed.?

The seizure itself, Karen said, can last between 30 seconds to an hour. Sometimes there is a warning before it hits. Lilly said it?s called an aura and ?sometimes my stomach hurts or feels funny.?

This type of experience, allows Lilly time to prevent injury to herself or others.

Karen said at night she might hear her daughter fall to the floor or the family?s Chihuahua will let them know something is wrong.

Her seizure disorder also forced her to leave Hillsboro High School during her sophomore year.

?I had fears of interrupting the class with a seizure, or fears of people looking at me differently,? Lilly said.

Sensitive to her condition, Lilly said her feelings at times are easily hurt.

?One kid said I looked like I was possessed by the devil (during a seizure),? she said. ?Things like that really bother me.?

After leaving HHS, Lilly enrolled at the Marion County Learning Center. But at some point, she wants to return to high school if her situation allows.

?Right now I am doing some credit recovery,? she said, ?because I was so afraid to go to class that I wasn?t doing my work.?

Lilly is also enrolled in two classes and will take another one over the summer.

What to do

If someone is having a seizure, Lilly said to make sure there?s nothing close to the person to latch onto.

?Put something soft under their head,? she said, ?so they don?t get a concussion or brain damage. Another important thing to do is call for help, especially if you don?t know what to do. And look for any medical alert bracelets.?

Karen said Lilly?s seizures can be a lot different from the kind other people endure because she gets so still.

?She will be so tense that she grabs onto tables, arms of chairs and anything can fall down on top of her,? Karen said.

One of Karen?s biggest concerns is Lilly not responding to her.

?I have seen Lilly take a mechanical pencil and bend it in half with three fingers on one hand,? she said.

Lilly?s worst seizure so far occurred at the Hillsboro Bowling Alley March 25.

?All of a sudden, I saw her go into this far-off look and it was about a 25-minute seizure,? Karen said.

Life today

Lilly said she continues to see a neurologist.

?My immune system is very weak,? she added.

Her mother sees how the seizures have affected Lilly?s daily life.

?I am not comfortable going someplace because I don?t know when they are going to happen,? Lilly said. ?I just stay at home.?

Prior to her 12th birthday, Lilly had no history of seizures. That Lilly was adopted further complicates her situation, according to Karen.

?The first five years of her life are unknown (as far as health-related issues),? Karen said.

At this point, doctor?s offer no longterm prognosis.

?I think a lot of it will need to come from Lilly, and some team effort, but I am hopeful she will go to college and do what she wants to do,? Karen said.

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