On a recent spring morning, sunlight pours into Ted and Jennifer Jantz’s log home near Newton, Kansas, where Jennifer sits at the dining table with their son, Zach, 36.
“When he was 6 months of age he started having seizures,” she says, describing Zach’s journey with Lennox-Gastaut Syndrome, a severe form of epilepsy characterized by frequent and multiple types of seizures.
Zach, who has intellectual and developmental impairment, occasionally looks up as his mother speaks. Sometimes he gently touches her arm.
“Some things gave us short periods of relief, but it seemed like the seizures always worked their way back in,” Jennifer says of therapies tried in Zach’s youth. “The low cognition was one thing, but it was the seizures that handicapped us as a family.”
In addition to medications, they tried steroids, an implanted device, a special diet, even brain surgery.
“That’s what you do as a parent,” Jennifer says. “You grab whatever you can to help your child.”
By age 18, Zach had no new options and was no longer on meds.
“There was a personality there that we weren’t seeing with all the drugs,” says Jennifer, who was concerned about harmful side effects. “I have not put him on a drug since, until now.”
Zach’s atonic seizures, also called drop seizures, greatly concerned his parents. “Drop is a kind word for them,” Jennifer says, describing how he would suddenly collapse.
“The biggest thing he likes to do is walk,” Jennifer says. “But in a cycle of heavy seizure activity, I’d place him in a wheelchair with a seatbelt and park him right by me. He wasn’t happy and I wasn’t happy, but it had to be done to keep him safe.”
Zach’s neurologist recommended a visit to Ricky Lee, MD, at Ascension Via Christi Epilepsy Center in Wichita. Dr. Lee, who specializes in difficult-to-control epilepsy, told Jennifer about a medication for drop seizures.
“These are the most disabling and devastating of all seizure types, for patients and for everyone around them,” says Dr. Lee. “Parents have to watch their children almost constantly because of fear of injuries. It’s physically and mentally draining because there’s no way to prevent the kids from falling.”
‘He’ll be all right’
On Jan. 7 of this year, Zach began taking Onfi®, the brand name for the anti-seizure drug clobazam.
“Since that day, I have not seen anything that I believe was a drop seizure,” says Jennifer.
While he still experiences other seizure types, Zach is no longer getting injured, says Ted. As primary caregiver, Jennifer found her stress has decreased. She still holds onto him to guide him, but the constant feeling of danger is gone.
“I’m comfortable turning my back to fix supper or leaving the room for a moment,” she says. “Now I feel a sense of ‘He’ll be all right for a few minutes.’”
The family is grateful for the expertise at Ascension Via Christi Epilepsy Center.
“Dr. Lee did a heck of a nice job getting me comfortable with the idea of a new medication,” Jennifer says. “He gave me the time I needed and answered my questions. His staff was great. It was a good experience for us.”
The Jantzes are optimistic, as there are no guarantees with seizure control.
“I never feel like we’re totally healed, but we’ll take it for as long as we can get it,” Jennifer says. “We pretty well include Zach in wherever we go and whatever we do. I think that’s good for him and I think it’s good for the world.”