When Shanita Jackson was 32 weeks pregnant with her daughter Alivia, she started bleeding. After several tests, Shanita was rushed into an emergency cesarean section to deliver her baby. Alivia was born with hydrocephalus (fluid buildup on her brain) and a grade IV brain bleed, which means there is bleeding into the brain tissues around the ventricles and is the worst on a scale of one to four. This bleed required four brain surgeries.
“Alivia had injuries to her brain at birth, which has led to a chronic injury that causes cerebral palsy,” says Dr. Kate Van Poppel, a pediatric neurologist and epilepsy specialist at Atrium Health Levine Children’s Hospital. “Brain injury increases the risk of seizures.”
Alivia’s Battle with Seizures
Alivia, now almost 6-years old, had her first seizure when she was a year old. Shanita recalls waking up in the middle of the night and feeling a “motherly instinct” to check on her baby.
“Her body was jerking and she was having a seizure,” says Shanita. “I thought, ‘What would have happened if I hadn’t woken up?’”
Shanita took Alivia to the hospital, where they confirmed Alivia had a seizure, but was otherwise okay. However, in the months that followed, Alivia had more seizures. Ultimately, she was diagnosed with epilepsy.
“If someone has had more than one unprovoked seizure, it generally indicates they have epilepsy,” says Van Poppel. “We will use their health history, description of symptoms and an EEG [electroencephalogram [EEG) is a test that measures electrical activity in the brain] to confirm a diagnosis. Sometimes, we’ll use an MRI to help understand why someone had a seizure, such as an injury or brain abnormality.”
Signs of Epilepsy in Children
Dr. Van Poppel says seizure symptoms in children include:
- Shaking events (a well-known seizure symptom)
- Episodes of unresponsiveness, such as staring off into the distance and not responding to the sound of their name
- Decline in learning and speech
Managing Alivia’s Seizures
Medication is the first line of treatment for epilepsy. Van Poppel says 50% of people will gain seizure control with the first medication they try, and two thirds of people eventually will get control of their seizures with medication. If they are on the right medications at correct dosage.
“Alivia has done really well and has been seizure-free for quite a while,” says Van Poppel. “We plan to continue her on these medications and adjust them as needed. If she remains seizure-free despite her brain injury, she could be able to stop taking the medications as she gets older. If her seizures were uncontrolled by medications, we would consider other options, like diet modifications or surgery. But Alivia hasn’t needed that.”
Shanita also says she ensures her daughter doesn’t overheat in hot weather and that she gets enough fiber, as constipation has triggered Alivia’s seizures in the past.
Thanks to a good medication regimen and the support of her family and medical team, Alivia is doing well.
“Being seizure-free has allowed Alivia to continue with her development,” says Van Poppel. “It allows her to focus on learning and having the best quality of life she can have.”
“She’s the happiest little girl,” says Shanita. “She has a developmental delay because of the trauma to her brain, but she’s learning and growing every day. She loves going to church, singing and spending time with her sissy, mommy and daddy. She’s so outgoing.”
While Alivia is at higher risk of needing seizure medications for the rest of her life, there’s a chance she’ll outgrow her seizures. Only time will tell, says Van Poppel.
Levine Children’s Epilepsy Program
Atrium Health Levine Children’s is home to the region’s largest pediatric epilepsy team and a Level 4 epilepsy monitoring unit, which is the highest level of accreditation.
“I’m proud of Levine Children’s epilepsy program because we offer the highest level of care in our community,” says Van Poppel. “We really focus on quality of life for our patients and want to ensure they can live their best, fullest lives, with seizure freedom as the goal.”
Van Poppel offers this advice to parents of children with epilepsy: “If you feel like your child isn’t getting seizure freedom after trying two or three medications, see an epilepsy specialist for a second opinion. There are so many options we can try.”
Shanita adds, “Levine Children’s has been such a blessing to our family. We’ve always been treated really well there and they always listen. We have a wonderful neurologist on our side, thanks to Dr. Van Poppel.”
Learn more about pediatric epilepsy treatment at Atrium Health.
Article updated on 1/18/23
