Dec 5, 2023, 5:15:40 PM CST Dec 5, 2023, 6:01:43 PM CST

H'lyia's story: A resilient teen, her dedicated mom and their medical journey

For two years, no one could explain what was causing H'lyia's symptoms. She and her mom found hope and treatment at the Children’s Health Epilepsy Center.

Young woman posing with crown on her head Young woman posing with crown on her head

High school senior, H'lyia, 17, is one of those kids whose schedule is packed with activities.

Throughout high school, she's been an active member of the mock trial team. She participates in the National Honor Society and Top Teens of America, a youth program that focuses on cultural, academic and civic activities.

Young woman wearing pageant dress and crown"Top Teens is my favorite. We do a lot of work to lift up the community and engage with other teens with a likemind of service and excellence," H'lyia said. "Through this organization, I found my love of volunteering which led to me dedicating my own time volunteering at my local library, helping children with learning disabilities read."

In March 2023, she was honored with the title Miss Top Teen of America for the Southern Dallas County chapter.

"Nothing slows this girl down. She's always been a very driven, very determined kid," H'lyia's mom Hattilena said.

Hattilena couldn't be more proud of her daughter. She's also cautiously, often nervously, watching as H'lyia fearlessly takes on new challenges. That's because H'lyia lives with generalized seizures – a type of epilepsy – which occur when the brain experiences a sudden wave of electrical activity, disrupting communication with other parts of the body. When this happens H'lyia can lose consciousness, have body spasms or experience loss of muscle control. Thankfully, her mom has deep confidence in Melanie Gliech, APRN, FNP, and H'lyia's lead provider at the Children's Health Epilepsy Center.

"Her care helps minimize my 'mom stress' and ensure H'lyia can safely participate in her favorite activities," Hattilena said.

H'lyia finds her medical hero

When Hattilena first brought H'lyia to the Children's Health Epilepsy Center in 2016 and met Melanie, the family had already been on a six-month journey of emergency room visits, appointments, consultations and tests. None of them gave the family a diagnosis for H'lyia's perplexing and often inconsistent symptoms.

H'lyia was 10 when she first mentioned to her mom that she had a loud ringing in her ears. Then she started having heart palpitations and tingling in her arms. Sometimes she would have a funny taste in her mouth.

"We did test after test, but everyone told me that she was perfectly healthy," Hattilena said. "As a parent, I was scared because we didn't know what was happening and I was scared to find out what it was. Besides seasonal allergies, my child had been perfectly healthy."

Hattilena started keeping detailed records of her daughter's symptoms, including taking a video to show the doctors how her heart pulsed in her chest. At the same time, H'lyia feared for when her symptoms would come on. This anxiety led to headaches, trouble sleeping and made it hard for her to concentrate at school.

Determined to find answers, Melanie asked them to endure one more series of tests. At the Epilepsy Center, Melanie was confident in her resources to not only give H'lyia a diagnosis but also treat her.

"I remember Hattilena saying to me – ‘Will you please help me? I don't want to do this anymore.' She then showed me the scar on H'lyia's forehead where she fell face down prior to having a convulsion. My heart just broke for this mom and her child," Melanie said.

Melanie ordered a full neurological exam including an electroencephalogram (EEG), which records electrical activity in the brain, a magnetic resonance imaging (MRI) scan to look at the structures of her brain. Based upon her abnormal EEG and clinical presentation, we were able to identify her diagnosis as generalized idiopathic epilepsy.

Young woman smiling and posing for a pictureOver a period of time, along with generalized seizures, H'lyia was experiencing a type of seizure called focal awareness seizure. These can happen when electrical brain function occurs in one or more areas on one side of the brain. The most common side effects of focal seizures are changes in hearing, vision and sense of smell.

"After the first test, Melanie told us she saw the seizure activity all over H'lyia's brain. It literally lit up like a Christmas tree," Hattilena said. "It just really caught us off guard."

Melanie also explained to H'lyia that her racing heart, tingling in her arms and headaches were associated with her seizure. But one of the most important aspects of her care was caring about H'lyia and supporting her every step of the way.

"Ms. Gleich really helped me understand this whole process and helped me figure out what I needed at school. She wants to see me doing the things that make me happy. I like that she actually talks to me about my life," H'lyia said.

H'lyia's dream team helps her stay seizure free

Right away, Melanie started the process of finding the right combination of anti-seizure medications for H'lyia. And at the same time, H'lyia's seizures were becoming more intense and more frequent.

"Treatment for epilepsy can have its challenges. We had to figure out what worked for H'lyia, reducing the frequency and intensity of her seizures, without making her too tired to go to school or unable to concentrate," Melanie said.

H'lyia and her family had to make adjustments in all areas of life to make sure H'lyia was safe if a seizure came on.

"At one point, she was having full-blown seizures, she would convulse and be out for five minutes. It would take a while before she could speak her name clearly," Hattilena said. "She wouldn't be able to move her hands. It was like she was just paused."

Hattilena and her husband also began sleeping on the couch so they could hear if something happened when H'lyia was asleep and be able to respond quickly.

Her teachers had to be trained on what to do if H'lyia had a seizure at school.

One of the hardest changes was staying out of the pool – H'lyia loves to swim – but the potential of a seizure when she was swimming was too risky. If she got water in her lungs she could drown.

"Learning I had seizures was really daunting. I just wanted them to be gone," H'lyia said. "But I knew with my faith in God and support of my family and Ms. Gleich everything would be ok," H'lyia said. "My mom would always encourage me not to dwell on it and always see the positive in things even when it was challenging."

Determined to not let the seizures take over her life, she channeled a message from her band director – in the beginning, joining the band was going to be hard, you're going to have to learn at a fast pace and keep up with the group. The band was also physically challenging and H'lyia didn't cut herself any breaks when she chose to play the baritone, which requires skilled coordination and a strong lung capacity.

"I didn't want to give up, I stayed and challenged myself to do something physically felt I was not able to do. I had faith in myself to succeed. I completed two successful seasons in the band with this attitude," H'lyia' said. "I developed this mentality while battling my seizure disorder. I don't want the seizures to be my crutch, so I just tell myself to keep going and thankfully I'm making it!"

And over time, things got better. Melanie listened closely to H'lyia and Hattilena's notes about symptoms and how the medication made her feel. She continually made small adjustments to the medication until they met H'lyia's exact needs.

H'lyia looks ahead with determination as seizures fall behind her

Now, seven years after H'lyia's first appointment, her visits to the Epilepsy Center are mostly check-ups. In the last two years, she's had only two seizures and didn't have to be hospitalized for either.

"This was never going to stop me from reaching my goals. When I was down, I always had someone to pick me up. I had my mom, my stepdad, my grandmother and Ms. Gleich," H'lyia said. "I'm excited for my senior year and I'm planning to go to a historically Black college or university (HBCU) school."

For Hattilena, knowing her daughter hasn't had a seizure in two years comes with gratitude, pride and hope.

Family photo wearing all black"Our family is very open with our feelings. I don't want her to not be able to deal with stress and things that come with life. We have an incredible village and Nurse Gleich has helped all of us make it through this process," Hattilena said.

As a provider, Melanie says that being true partners with her patients and their families is the key to developing the right treatment plan. She knows that with each new diagnosis, there are a lot of questions and families are often most worried about their child's health and future wellbeing.

"Education about seizures and supporting our patients and families is a priority at every visit," Melanie said. "My goal is to get as many of my patients to a place like H'lyia, where she has the support she needs in every part of her life and seizures aren't holding her back. Her perseverance and positivity is evident on how strong she is. I know she can accomplish anything she sets her mind on."

Learn more about our Epilepsy Center

The Level 4 Epilepsy Center at Children's Health provides expert care personalized to each patient's individual needs. Our team of experts includes neurologists, epileptologists and advanced practice providers who have access to the latest treatments and research. Learn more about our Epilepsy Center and how we care for our patients.

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epilepsy, patient story, seizure, treatment

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