7-year-old Penn Valley boy battles severe form of epilepsy
Forrest Hurd sits in his dark gray Mitsubishi Endeavor in the parking lot of Williams Ranch Elementary School in Penn Valley, a short distance from his son’s special education classroom.
He waits, cell phone in hand.
Seven-year-old Silas has suffered seizures for about three and a half years now, but in the last several months, they’ve become more frequent and more serious. On Dec. 16, the school had to call 911 after Silas suffered a severe tonic-clonic seizure, a type of seizure characterized by convulsions and loss of consciousness.
The emergency seizure medication Silas’ doctors have placed him on, Ativan, isn’t approved by the Federal Drug Administration for use by children, and isn’t something school aides are legally able to administer in the classroom.
As a result, Silas was placed on independent study, and Hurd watched his son’s daily social interaction with other kids disappear. Last week, he struck a deal with the school — Silas is able to come in for a few hours each day to socialize and work with specialists, as long as Hurd stays on school grounds to administer the emergency medication, if necessary.
So Hurd sits in the parking lot and waits.
“Those are kids who accept him and they play with him,” Hurd said. “I didn’t want him to lose that.”
Last October, after years of seizures, Silas was diagnosed with Lennox-Gastaut syndrome, a rare and severe form of epilepsy that affects between one and four percent of child epileptics. The condition causes frequent seizures of different types and is degenerative, typically worsening over time. There currently isn’t a cure, nor is there a single medication that’s been proven to control the seizures.
Forrest Hurd estimates that Silas has about 200 seizures a month, usually experiencing several different types of seizures sequentially within one episode. Silas’ seizures don’t always culminate in a severe tonic-clonic seizure — but when they do, he said, it’s especially dangerous, because Silas has already had a series of lesser seizures that have done damage to his brain.
Silas’ LGS diagnosis has left the family — including Silas’ mother, Nicole, and 9-year-old sister, Abbigail — with more questions than answers, as they struggle financially to provide care for Silas and grapple emotionally with the path ahead.
“We just live in this constant state of anxiety,” Forrest Hurd said. “And it’s gotten bad really quick, so that makes us feel panicked.”
Hurd and his wife first noticed something was off with Silas, a sweet-faced boy who loves Star Wars, superheroes and listening to music, when Silas was about 3-1/2. Silas wasn’t responding when Hurd was trying to get him ready for school. Hurd noticed Silas’ eyes were dilated, and Silas vomited shortly thereafter.
“I knew right away what it was. That was the day we’re like, oh my gosh, my kid had a seizure,” Hurd said. “And it just never stopped.”
As the years have progressed, the types and intensity of Silas’ seizures increased at a fast pace — and developmental delays became more prominent. Silas has been diagnosed with autism, as well as an intellectual disorder.
The family shuffled back and forth between doctors who were unable to pinpoint exactly why Silas’ seizures were worsening, Hurd said. Finally, Silas was hospitalized, and doctors ordered brain tests that led to the LGS diagnosis. LGS can be caused by brain injury or malformation, and an MRI showed two small holes in Silas’ frontal cortex; however, doctors can’t say for sure how those holes developed or if they caused the condition.
The diagnosis has required the family to divert most of their income to provide Silas with the care he needs. Hurd had to take unpaid leave from his job working with at-risk youth to care for Silas full time; his wife is still working as the recreation coordinator at the Lake of the Pines Association to maintain the family’s health insurance. In addition to their insurance premiums, there are medications, trips to visit doctors at the University of California, San Francisco and the basic expenses of the family.
Hurd recently set up a GoFundMe page, complete with videos and pictures of Silas, to help fundraise money for medical costs. So far, the family has raised more than $12,000.
“I’m not good at asking for things, especially when it comes to money, but we were nearing the bottom line,” Hurd said. “We couldn’t get him to appointments; we were two weeks away from not being able to afford his care or pay the rent.”
The family is on high alert for seizures that can come at any time. The other night, Hurd said, Silas got up to go to the bathroom. He and his wife heard a noise, and found that Silas’ seizure had caused him to fall face-first into the bathtub, his feet dangling over the bathtub’s edge.
“It’s like we’re in a constant state of emergency,” Hurd said. “We hear noises or bangs or hear Silas moan, and we go into full panic attack. Every noise, it’s like, ‘is that a seizure?’”
The scariest part, Hurd said, is just not knowing what the future holds. It’s extremely rare for someone with LGS to completely stop having seizures. Though the prognosis varies by individual patient, most LGS patients are at an increased risk of death, usually due to falls or other complications from seizures.
“We don’t know if he’s going to stabilize and live, we don’t know if it’s going to get bad and he’s not going to make it,” Hurd said. “We just don’t know.”
For now, Hurd said, the family is simply trying to do what they can — even if that means Hurd has to spend several hours a day waiting in his car in a school parking lot.
“I try to stay present in the moment,” Hurd said. “Right now, I don’t want Silas to have to go without any more than he’s already missing out on. If I have to sit in a parking lot so he can color and have interaction with friends, that motivates me.”
To contact Staff Writer Emily Lavin, email email@example.com or call 530-477-4230.
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