Teen Thrives After Getting Support for Epilepsy
December 24, 2019
At age 12, Maddie excelled in school and was an accomplished dancer. But her world began to change when she started experiencing strange symptoms.
She would get caught in stares without being able to remember what had happened. She began to feel like she was losing time. These episodes of being “out of it” happened most often when Maddie was under stress – such as when she was talking in front of class. As they became more frequent and kids started to tease her, Maddie’s anxiety rose.
“I was panicked and terrified. I didn’t want something to be wrong with me and felt out of control,” Maddie says. “I just tried to hide it – I was so afraid of being judged.”
Even Maddie’s parents did not initially recognize the problem.
“I would be talking to Maddie and she just wouldn’t answer. I thought she was just being a typical teenager. Once, she walked into traffic at a busy intersection and I had to pull her back,” recalls Maddie’s dad, Bill. “It seemed like she was being absent-minded until we started talking about it. It’s so important to pay close attention.”
But it wasn’t until Maddie had a serious staring episode during a national dance competition that the family knew something was seriously wrong.
The Importance of an Accurate Diagnosis
The next day Bill called UH Rainbow Babies & Children’s Hospital’s pediatric neurology department and scheduled an appointment for Maddie with pediatric neurologist Jessica Goldstein, MD. Based on Maddie’s symptoms, Dr. Goldstein suspected Maddie had a type of general pediatric epilepsy characterized by absence seizures.
“Absence seizures are brief, generalized seizures that last just a few seconds, during which a child is unresponsive and often appears to be staring before they ‘click back in,’” Dr. Goldstein says. “Without treatment, the condition can impact their schoolwork and activities because they are unaware of what is happening during those brief seconds, which often occur multiple times in a day.”
Because they are so subtle, absence seizures can be very difficult to identify. In fact, some children are thought to have focusing issues or a habit of ignoring their parents. For Maddie, a headache often preceded a seizure. And anxiety seemed to worsen them.
To make a definitive diagnosis, Dr. Goldstein scheduled an EEG – a test that records the electrical signals of the brain. The test confirmed that Maddie had childhood absence epilepsy.
Epilepsy has many different forms that vary in complexity and severity. The Comprehensive Level IV Pediatric Epilepsy Center at UH Rainbow Babies & Children’s Hospital is renowned for comprehensive evaluation, accurate diagnosis and treatment of seizure disorders by a team of specialists. Since Maddie’s form of epilepsy is typically well-controlled with medication, she only required this type of care by Dr. Goldstein.
“With treatment, kids with epilepsy can do anything that any other kid can,” Dr. Goldstein says. “It’s so rewarding to watch these children grow and thrive.”
Thankfully, the first medication that Maddie was prescribed worked. She no longer suffered from seizures and her headaches went away. It was the beginning of Maddie’s journey to trust herself again.
Stronger Than Before
Throughout the next few years, Maddie kept quiet about her epilepsy. But she began working with UH Rainbow pediatric psychologist Howard Hall, PhD, PsyD, to learn coping strategies for managing her anxiety. Slowly, Maddie opened up about her condition and her confidence grew.
Maddie began attending Epilepsy Foundation events, supporting the cause and connecting with others with epilepsy. She was chosen by her high school for a special program to work in the community with adults with special needs. And she turned to swimming for a physical outlet, making USA Sectional Cut last year at Hudson High School, despite swimming with a torn bicep.
During high school, Maddie also played varsity golf, got her driver’s license and earned exceptional grades in her high-level coursework. Today, as a high school senior, Maddie is preparing to study neurology in college.
“Dr. Goldstein has been such a great doctor who really listens to me. We’ve become so close,” Maddie says. “I want to help other kids who have experienced neurological issues. I think I can help since I’ve walked in their shoes.
“Through everything, I learned I can do whatever I set my mind to and know it’s OK to be my true self,” says Maddie, who has experienced just two breakthrough seizures since treatment. “Without my epilepsy, I wouldn’t be the person I am today.”
To learn more about the UH Rainbow Level IV Pediatric Epilepsy Center, visit UHRainbow.org/Epilepsy.