NORMAL — “Watch out!”
Smiling broadly, Alayna Hall, 6, excitedly warned a visitor standing in front of her that she was reaching new heights on her backyard swing.
“I like swings. It’s fun,” Alayna called out.
Younger sister Kaylann, 3, was swinging beside Alayna. Behind the girls stood brother Brayden, 10, and parents Dustin and Holly.
But Holly looked concerned.
When your 6-year-old daughter has epilepsy and a history of seizures, it’s difficult to relax and fully enjoy even uplifting moments.
“When you compare her today to when she was a 2-year-old having 25 seizures a day and we didn’t know how she could be able to be in a classroom, she’s come a long way,” Holly said after outdoor play time on June 11. “She leads a pretty normal life for a 6-year-old.
“But we have no clue what her future holds,” Holly continued. “We don’t know if her seizures will get worse, we don’t know whether we will be able to (continue to) control them or whether they will go away.
“There are no answers with epilepsy.”
Alayna — who knows she has epilepsy — responded to only one question about her medical condition. Asked how she does with epilepsy, the 6-year-old responded “Good.”
Epilepsy — the Normal family has discovered — is a paradox.
It’s more prevalent than people realize, affecting one in 26 people in the United States, making it more common than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson’s disease combined, said the Epilepsy Foundation.
But resources are limited for young children with epilepsy, the Halls discovered.
“Support for epilepsy? We haven’t found that to be a reality,” Holly said.
“Our saving grace has been two phenomenal doctors (Dr. Kimberly Marshall with Bloomington Pediatrics & Allergy and Dr. Liu Lin Thio, director of the pediatric epilepsy center at St. Louis Children’s Hospital and Washington University School of Medicine) who have pushed us to advocate for her and who are constantly monitoring her care,” Holly said.
Epilepsy remains largely misunderstood.
“The picture that people have is someone having a five-minute, grand mal seizure,” Dustin said, referring to a seizure frequently caused by epilepsy that includes loss of consciousness and violent muscle contractions.
“But that’s not what she has,” Dustin said. “Her seizures are not as apparent.”
The first indication that anything was wrong with Alayna was when she was about 6 months old and Marshall diagnosed her young patient with hypotonia (low muscle tone). At 1 year old, Alayna was not progressing toward walking or pulling herself up and Marshall referred her for physical and occupational therapy and to an orthotics business where Alayna was fitted for foot and ankle supports.
When Alayna was 15 months old, the Halls observed her have a seizure for the first time.
“She began to have episodes where her eyes would roll up, her facial expression would drop and her arms would fly out to the sides,” Holly recalled. “She’d jerk like an exaggerated startle.
“We’d see one or two a day. We didn’t know what they were.”
Marshall immediately suspected seizures. An EEG (electroencephalogram), which measures and records the brain’s electrical activity, confirmed that Alayna was having seizures and Marshall referred the family to Thio, a pediatric neurologist who specializes in pediatric epilepsy.
But because there is a shortage of pediatric neurologists, the family would have to wait 11 months for Alayna’s first appointment with Thio. They took Alayna to a pediatric neurologist in Springfield “but that was a bad experience,” Holly said.
“I was surprised that, in this day and age when something is going on medically, that resources are so limited that we needed to wait 11 months,” she said.
By 16 months old, Alayna was having 25 seizures a day.
“As parents, we were distraught,” Holly recalled. “We had no idea what to do. When she began walking, when she’d have a seizure, she’d fall flat on her back. We glued ourselves to her. Brayden was helpful.
“It was a very difficult year. We just stayed by her side and helped her as much as we could.”
Without a diagnosis, the Halls didn’t want to start her on anti-seizure medicine. Holly couldn’t find a local epilepsy support group.
After the 11-month-wait, Thio diagnosed Alayna with epilepsy, at age 2 years and 3 months. He said she was having myoclonic seizures, meaning her entire brain was affected during her five- to 10-second episodes.
The Halls further found out that — in addition to Alayna’s 25 convulsive seizures each day — she likely was having another 25 non-convulsive, unnoticed seizures. While the Halls believe that Alayna was born with epilepsy, the cause isn’t known.
“My reaction to the diagnosis was ‘Thank you for confirming what we’ve known. What do we do now?’” Holly said.
Thio prescribed Zonisamide, an anti-seizure medicine, which she takes twice a day. The medicine helped and the convulsive seizures declined.
But it took awhile to get the correct dose because the Halls wanted seizures controlled while managing the drug’s side effects, which include fatigue and moodiness.
“As we (slowly) increased her medicine over a year, we obtained control of her convulsive seizures,” Holly said. EEGs have indicated that non-convulsive seizures continue but they are better controlled and aren’t as frequent.
Epilepsy has affected Alayna’s ability to learn. For example, she has attention deficit disorder (without hyperactivity), which is common among children with epilepsy.
She struggled in kindergarten and the Halls were frustrated that — despite Alayna’s diagnoses — she was not able to get an IEP (an individualized education plan for students with a disability) in place until April. The Halls hired a tutor to work with Alayna.
“Considering everything she has going against her, I think she did well” in kindergarten, Dustin said.
They hope first grade is better. Meanwhile, she is enjoying riding her bike and taking swim and dance lessons.
“When Alayna wants to do something, she’ll work at it until she gets it right,” Holly said. “A lot of how well she does is because of her attitude. She is an ‘I can do it’ person.”
Holly said, “I worry whether she will be able to drive, have children and whether people will treat her differently.
“I don’t want her epilepsy to prevent her from learning and participating in activities that she enjoys. It’s what every parent wants for her kid.”
Based on their experience rearing a girl with epilepsy, Dustin and Holly Hall have the following advice for parents whose children have medical conditions:
- Trust your instincts. If something appears wrong with your child, it probably is.
- Speak up. Tell your child’s doctor, teacher or day care provider what’s going on. Ask for their observations and assistance.
- Use your child’s doctor as a resource. Ask the doctor for his or her thoughts on dealing with the symptoms and about resources.
- Be your child’s advocate. Learn about your child’s condition. Advocate for your child so he or she gets the support needed in school and after school.
- Epilepsy is a medical condition that produces seizures that affect mental and physical functions.
- Seizures happen when the electrical system of the brain malfunctions. Instead of discharging electrical energy in a controlled way, brain cells keep firing and the surge of energy through the brain may cause unconsciousness and muscle contractions.
- While a seizure may cloud awareness, block communication and produce uncontrolled movements for only a minute at a time, confusion afterward may last longer.
- Seizures may be caused by an infection such as meningitis, head injury, lack of oxygen to the brain, illness or genetics. In some cases, the cause isn’t determined.
- Epilepsy affects about 2.2 million Americans and is the No. 4 neurological disorder in the nation, following migraine, stroke and Alzheimer’s disease.
- While medications and other treatments help people with epilepsy, some people with the disorder continue to have seizures that limit their school achievements, employment prospects and participation in other life activities