A Day Like No Other (Robyn Vose)

Tuesday, April 20, 2010

A day like no other
A mother becomes an advocate for epilepsy awareness after her daughter is diagnosed

By ROBYN VOSE
Special to the Leader

Tuesday, April 20, 2010

Wells family members (from left) Adam, April and Amandya hold a proclamation declaring March 26, 2010 as Purple Day in Round Rock.
By the numbers
101

Febrile seizures are not uncommon in young children with mild to high fever -101-degrees or greater – according to the Epilepsy Foundation of America. The medical community does not believe febrile seizures cause any life-threatening, serious, or long-term problems, and the condition usually stop after age 5.

40

The National Society for Epilepsy has identified 40 types of epilepsy so far.

26

March 26 was designated Purple Day in Round Rock to raise awareness about epilepsy.

50 million

50 million people worldwide live with epilepsy; 3 million of those are Americans.


For most people, Jan. 26, 2010 was a day like any other and probably not too memorable. It was a Tuesday and the weather was sunny and pleasant, with afternoon temperatures in the 60s.

Around 4:30 p.m., school was out, many businesses were beginning to wind down for the day, and traffic was settling into its usual snail’s pace on major roadways. For the most part, it was just another day.

For April Wells, the events of that Tuesday afternoon will not soon be forgotten. She was riding down the office elevator in downtown Austin, where she works as a database administrator, when her cell phone rang. The call was coming from her teenage daughter’s phone.

She remembers the episode as somewhat confounding at first. Poor cell reception mixed with disbelief made it hard to decipher what the school resource officer from Stony Point High School was saying.

Her 15-year-old daughter, Amandya, had just experienced what appeared to be a seizure outside of the school in the parking lot. The officer found a cell phone in her daughter’s belongings and used it to locate April. The responding paramedics needed to know if her mother had a hospital preference where they could transport Amandya.

Armed with a mother’s protective instinct and a take-charge personality, within minutes April was on her way to the emergency room at Seton Medical Center in Round Rock.

It was determined that Amandya had suffered a seizure, although why it happened still remains a mystery. After several blood tests, a urine analysis and a CAT scan showed no signs of a serious ailment, Amandya was released on the condition that she schedule an appointment with a neurologist the next day.

April was left scratching her head. Amandya just wanted to put the seemingly freak incident behind her as soon as possible and return to her normal routine – school, JROTC, running, homework and, of course, friends.

And then, again

Amandya would only enjoy a few more weeks of normalcy before it happened again. This time she was at home, playing with her dog and talking with her older brother Adam, when her body suddenly went rigid.

April can also remember Feb. 21 with great clarity, and described what happened.

“Adam said, ‘Uh, Mom, I don’t know if Amandya’s messing with me, but you better come quick,” April recalled.

For almost seven minutes Amandya’s limbs were rigid yet flailing, April said, and she experienced continual muscle spasms in her face. April remained by her daughter’s side during that time, but was unable to do anything for her.

It is unsafe to try and restrain someone during a seizure, even if their behavior appears alarming. The best thing to do for Amandya during a seizure, April had learned, was to make sure she was laying on a soft surface. If possible, it is also a good idea to turn someone who is seizing on their side, so that if they throw up they will not choke.

Back to the hospital they went, this time to Dell Children’s Medical Center in Austin. For the next two days Amandya endured a battery of tests. Sitting vigil at her daughter’s bedside, April put her laptop computer’s search engine to the test to learn as much as she could about what Amandya was experiencing.

By the time the diagnosis finally came, April had already discovered it – complex partial epilepsy.

April was no stranger to the concept of seizures. As a child, April said she sometimes experienced febrile seizures when she was sick with a high fever, as did her older son Adam, now 18.

Febrile seizures are not uncommon in young children with mild to high fever -101-degrees or greater – according to the Epilepsy Foundation of America. The medical community does not believe febrile seizures cause any life-threatening, serious, or long-term problems, and the condition usually stop after age 5.

Amandya never had febrile seizures as a toddler; rather, her seizures are a result of a chronic neurological disorder. As with all types of epilepsy (the National Society for Epilepsy has identified 40 so far), seizures happen when the electrical system of the brain malfunctions.

Instead of discharging electrical energy in a controlled manner, the brain cells keep firing. This sometimes results in a surge of energy through the brain, causing unconsciousness and contractions of the muscles, according to the Epilepsy Foundation.

The location of that electrical surge in the brain determines the physical effects on the person seizing. For Amandya, the electrical disturbance is limited to one part of her brain where consciousness is impaired or lost.

Partial seizures are the most common type experienced by people with epilepsy, the organization states. Virtually any movement, sensory, or emotional symptom can occur as part of a partial seizure, including complex visual or auditory hallucinations.

Amandya was prescribed Keppra, a common anti-epileptic drug, and released from the hospital Feb. 24. Two days later, April posted the first entry on her newly created blog chronicling her and Amandya’s experience.

The journey begins

“Well, here I am,” the first post began.

“I decided to separate my journey through trying to get me well and healthy from trying to get my daughter through her journey into dealing with epilepsy,” April said, referring to her own recent diagnosis with rheumatoid arthritis and the blog she created to help her deal with it.

April posted every two or three days throughout March, noting the obstacles Amandya was facing on many fronts. Side effects from the Keppra were sometimes debilitating and wreaking havoc on her tiny frame. Friends were becoming distant or avoiding her altogether. Teachers didn’t quite know how to react, either.

Amandya felt strong enough one day to participate in a Junior ROTC field meet. She was up for the one-and-a-half mile race, she assured her mom. Wanting to encourage Amandya to resume as normal a lifestyle as possible, April agreed to let her run.

Unfortunately, the activity proved to be too much and she became ill – not from a seizure but rather from the medication, which she was only just beginning to adjust to.

April remembers Amandya’s anger and frustration as she lay wrapped in her mother’s arms outside the stadium gate, recovering from the vomiting attack.

“It’s not fair,” Amandya sobbed repeatedly.

“I can’t argue with her; it isn’t fair,” April posted on her blog later that day.

“It isn’t fair to be 15 when you are diagnosed with something that has the potential to change all of the plans you had made for the rest of your life. It isn’t fair to have to deal with all of this stuff like the fear of seizures or the way that the anti-seizure meds make you feel,” April said.

“There are a whole lot of things that are way less fair, and that is something I’m trying to help her understand. But when you are in the middle of it, hearing isn’t always easy.”

Accidental Advocate

An admitted Type-A personality, April continued to collect and plow through piles of data written about epilepsy. If it was out there, it was mandatory reading material to help her family better understand what Amandya was going through.

During her search, April noticed an upcoming awareness event, Purple Day slated for March 26, and a website dedicated to the international event. Before long, April was named the Round Rock Ambassador of Purple by the group.

She was in charge of spreading the word throughout her community to wear purple on March 26 in support of raising awareness on the facts about epilepsy. April’s job was to let people know that the misinformation surrounding epilepsy has added to its stigma, and that incidents of seizures and epilepsy are far more common than most people realize.

Who knew that, of the 50 million people worldwide living with epilepsy, 3 million of those are Americans? Who knew that the odds were 1 in 10 that a person would have at least one seizure in his or her lifetime?

With very little time before the event, April did what she could to spread the word. In her mind, any effort was worthwhile if it meant shedding light on a condition that, until recently, she also knew very little about.

Purple Day organizers suggested that ambassadors contact their local mayor’s office and ask them to proclaim March 26 as Purple Day. Round Rock Mayor Alan McGraw agreed.

At the March 25 Round Rock City Council meeting, Amandya and April stood at the podium while McGraw, wearing a purple tie, read the proclamation.

In her first public speaking role on behalf of her daughter and the millions like her, April laid out the basic facts about epilepsy and tried to shatter the myths.

“Danny Glover, Richard Burton, Harriet Tubman, Agatha Christie and Flo-Jo all share one thing in common. They all have or had epilepsy,” April began.

“Epilepsy is not contagious. When someone is having a seizure they are not having a ‘fit.’ They are not going to hurt you and you’re not going to catch anything. It’s not a psychological disorder and it’s not a disease. It is a condition,” April said.

“Do you think she knows that she’s my hero?”

Amandya is a quiet girl. She relies heavily on her mother during these early days of getting used to the condition, and April doesn’t seem to want it any other way.

Outside a coffee shop recently, Amandya sat with her mom to talk a little more about her experience and how it has changed her life in the short time since she was diagnosed.

Amandya is shy. She is not thrilled to have strangers know her name, and even less so to have it attached to epilepsy.

She hasn’t had a seizure in a couple of weeks and is getting a little nervous. April recently found out that the seizures could be related to hormones.

Now they keep a calendar. Neither Amandya nor April want to anticipate or plan for a seizure, but if her condition is linked to hormones they want to be prepared each month.

Sometimes Amandya doesn’t know which is worse – having a seizure or the preventive medication that renders her nauseous and dizzy most of the time.

In a blog posting, April wondered if Amandya realized that her courage was fueling April’s conviction to help smooth the likely bumpy road ahead.

“Do you think she knows that she’s my hero? I don’t really think she does and I know she would never believe me,” April wrote in a recent posting.

“It’s been two weeks and she is starting to think there might be another seizure. She’s worrying and she’s still working on her biology and her English…she keeps on keeping on,” April said.

And so April also keeps on in her new advocacy role, and is trying to gather support for a Round Rock 5K run for Purple Day next year.

But that seems like a long way off to Amandya, who drifted in and out of the conversation outside the coffee shop.

She had gradually slid down in her chair until she found a comfortable slouch. Amandya’s elbows rested easily on the chair’s arms, forcing her shoulders up just enough to give her a look of 15-year-old dismissive confidence.

Amandya said she felt “OK” on that day, savoring the sweetness of a caramel frappucino, unaffected by chilly wind gusts that often had others grabbing hold of their cups. The sky was clear, weekend traffic whizzed along on the nearby interstate, and people passed her table without a glance.

This was a day just like any other.

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