Epilepsy: Jayce’s Story
Patient Story Highlights
- Jayce was suffering from a rare condition called infantile spasms, which causes the brain to send incorrect signals through the body.
- Infantile spasms can be caused by brain malformations, infections, brain injury or abnormal blood vessels in the brain. The condition also can occur in babies with metabolic and genetic disorders. In rare cases, a baby's infantile spasms are caused by vitamin B6 deficiency.
- Treatment usually involves a course of steroids or daily medication used to treat seizures. In some cases, such as an infant with a brain malformation, epilepsy surgery can be considered.
As births go, Jayce’s was happily uneventful. Having welcomed big brother Brandon three years ago, his parents knew the ropes. Jayce weighed in at a healthy 6 pounds, 10 ounces and ate, laughed and played as he grew.
“Jayce was a calm baby,” recalls mom, Taylor. “He didn’t cry or fuss much and was enjoying life.”
While babysitting in October 2017, Jayce’s grandmother noticed the then 6-month-old had what looked like a spasm. His head dropped forward and his shoulders hunched upward. She sent a video to his parents, who had never seen this happen.
“We didn’t think it meant anything was wrong," Taylor says. According to children’s health experts, that’s not an unusual reaction as the seizures, known as infantile spasms, can easily be mistaken for colic, reflux or hiccupping.
A week or two later on Oct. 23, 2017, as Taylor was giving Jayce his bottle, she noticed his body stiffen while he lay in her arms. The family immediately headed to the Emergency Center at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida.
“That 15 minutes felt like three hours,” Taylor says of the trip to the hospital. “It was very scary.”
Within half an hour, doctors admitted Jayce. He had a diagnostic electroencephalogram (EEG), which detects electrical activity in the brain using electrodes attached to the scalp. Along with a clinical history of seizures, it is one of the main tests for diagnosing epilepsy.
“Within 24 hours, we had an answer,” Taylor says. “The doctors broke the news to us that we were in for a big fight and that we should prepare for a worst-case scenario.”
Jayce was suffering from a rare condition called infantile spasms, which causes the brain to send incorrect signals through the body. Infantile spasms are among the conditions classified as epilepsy. West syndrome is characterized by infantile spasms, intellectual disability and a hypsarrythmia pattern on an EEG.
According to the Epilepsy Foundation, the condition is rare, occurring in one baby out of a few thousand. It begins between 3 and 12 months of age and usually stops by the time the child is between 2 and 4 years old. In one-third of babies, like Jayce, there is no known cause and no family history. However, more and more gene mutations are being linked to infantile spasms. Studies have determined that vaccines do not cause epilepsy.
Infantile spasms can be caused by brain malformations, infections, brain injury or abnormal blood vessels in the brain. The condition also can occur in babies with metabolic and genetic disorders. In rare cases, a baby's infantile spasms are caused by vitamin B6 deficiency.
Seizures usually start suddenly and last for a second or two. Sometimes, they occur in a series or cluster. Infantile spasms tend to happen most upon the sleep-to-awake transition. In some children, their heads drop forward while their arms fling out and knees pull to their bodies, described as “jackknife” seizures. In others, their heads bend back while the arms and legs straighten. There may also be small movements in the neck or other parts of the body.
Babies who have achieved milestones such as rolling over or babbling may lose those abilities after the onset of seizures. Those whose seizures are related to an underlying brain disorder or injury have a higher likelihood of moderate to severe developmental delays later in life. However, for those like Jayce, who were developing normally before the seizures began, 10 to 20 percent will have normal functioning and others may be only mildly impaired.
Treatment usually involves a course of steroids or daily medication used to treat seizures. In some cases, such as an infant with a brain malformation, epilepsy surgery can be considered.
Taylor recalls how she felt when she first received the news. Images flooded her mind of Jayce spending his life in a wheelchair, unable to speak.
“The images from his EEG were frightening, and we were scared and felt helpless,” she says.
Fortunately for Jayce, Johns Hopkins All Children's has a Epilepsy Center, which provides care for even the most challenging cases.
In May 2019, Jayce had another seizure. Jayce began medication that better controlled his seizures.
The team of doctors was helpful and provided a support system for us,” Taylor says. “We prayed that this medicine would help him overcome the issue he was having, and that he would return to being a healthy, playful baby. There were many long nights, but each visit to the neurologist brought us hope."
Today, Jayce is a smiling, happy toddler. He has lost the excess weight gained from the steroids he took to treat the original infantile spasm. He loves Baby Shark and building houses with wooden blocks and playing with Brandon, whom he calls “Bubba.” His favorite color is orange, at least for the moment. It used to be blue, mom says with a laugh. This past Halloween, he was a police officer. Not only does he walk, but he also talks and is able to dress himself. The next milestone he is working toward: potty training.
“Today if you see Jayce, you would never know what he has been through in his short life,” Taylor says. “He is a typical 2-and-a-half-year-old who loves life. None of this would be possible without the help from the doctors at Johns Hopkins All Children’s Hospital, the support from our family, and all the efforts of his teachers and therapists.”