William Savage has been the youth minister at New Beginnings Church since 2007. In December 2008, he and his wife, Amy, their son, Will, and daughter, Ryann, were getting ready to put up their Christmas tree. Ryann was 3 years old at the time. What started as a fun family time turned into a worrisome incident. It was the day their daughter first showed symptoms of epilepsy.
"We noticed her lying on the floor shaking. She was conscious at the time. She could talk to us and said she couldn't stop 'wiggling.' After she was done ... her legs were so weak that she wasn't able to stand up on her own." William said.
The Savages took Ryann to the emergency room at Mercy Tiffin Hospital. By the time they arrived, Ryann was able to walk, and her vital signs were normal.
Ryann Savage, 5-year-old daughter of New Beginnings youth pastor William Savage, has been diagnosed with epilepsy. New Beginnings Church is hosting a car show to raise funds for the Epilepsy Foundation.
The staff ran a CAT scan and advised the couple to make an office visit with their pediatrician as soon as possible.
Back at home, they had lunch and put Ryann to bed for a nap.
"I went upstairs to check on Ryann and she was having another seizure only at that time, she was not conscious. Her eyes were rolling back in her head, she was shaking all over, frothing at the mouth and making a gasping noise," Amy said. "It was very scary, especially when you don't know anything about
that type of seizure."
Amy said her mother had suffered from mild epileptic seizures called complex partial seizures in which her thumb would twitch and she would be in a dazed state for a short time.
Although her mother lost consciousness, she did not shake,
lose mobility or suffer extreme fatigue.
"That was the only thing I was familiar with, but once Ryann's shaking stopped, she was still completely unconscious. I couldn't wake her up, and the only thing I had to calm myself down at that point was being able to feel her pulse and know that she was still breathing," Amy said.
The Savages returned to the hospital with Ryann and made arrangements to transport her to a pediatric hospital.
Another family in the church had taken their son to Rainbow Children's Hospital in Cleveland, so Amy and William thought it would be a good facility. Snowy weather made Life Flight too dangerous, so Ryann and her parents had to travel by ambulance.
"It was a three-hour squad trip to Cleveland that is generally two hours," William said.
Ryann's second seizure lasted about eight minutes, but Amy said her daughter did not regain consciousness until they were halfway to Cleveland. The three of them spent four days at the hospital.
While Ryann was being tested, her parents were learning more about epilepsy. William said its definition is "seizures without a known cause." They took classes covering topics such as how to care for their daughter during a seizure, the proper techniques for CPR and first aid, and the myths associated with epilepsy. The staff advised them not to place an object in Ryann's mouth because she could swallow the object and choke on it.
"When they're having a seizure, they're already gasping for air, so they're sucking that air in hard. Anything you put in their mouth blocks the airway and lessens the oxygen they're getting. That's the No. 1 thing, other than falling and hitting their heads, that could cause serious injuries from a seizure," Amy said.
The pediatric neurologist prescribed a sedative to slow Ryann's body if she had a seizure that lasted more than 10 minutes. He wanted to observe Ryann for a few months to discover the pattern of her seizures. William said she went five months without an incident, but then she suffered two seizures the same day. The doctor wanted to wait another five months before prescribing medication.
Right on schedule, Ryann seized again.
In order to disrupt the pattern, Ryann now takes the drug Keppra twice a day. Information at www.epilepsy.com says the medication slows the rapid firing of brain cells that occurs during a seizure.
William said Ryann did have seizures after that, but she was able to recover in about two hours. Amy said Ryann has been free of seizures for nearly a year and will have her next check-up in November.
"He told us, when we started the medication, if we can get her to the point where she has two full years seizure-free, then we'll start weaning her off the medication and see if we've broken the pattern and she's grown out of it," Amy said.
The neurologist said Ryann has a good chance of outgrowing her seizures as long as she has no other medical issues, such as allergies or frequent fevers, playing a role in her condition.
Amy said she knows heredity is a factor. As a toddler, she suffered a mild seizure herself.
The Savages say they have learned that brain damage from lack of oxygen is not much of a danger to Ryann because her seizures are relatively short. The challenge is to keep Ryann from injuring herself while allowing her to be as active as she wants to be. Ryann takes ballet in the summer and now is playing soccer in a program at her school.
"Typical, everyday things that children do, we just have to be more cautious with her and watch her more than you would a normal child. You can't take their freedom away from them, because then they learn to hate the disease," Amy said.
"She's doing all the stuff that every other kid is doing. It's just that any time, she could have a seizure," William added.
Because the Epilepsy Foundation has been a big help to the Savage family, the organization was chosen to receive the proceeds from the New Beginnings Car Show.
"They are the ones that set up the education within hospitals, organizations and pre-schools. Their biggest focus is education for families and people who are going to come in contact with epileptics," William said.
That would include teachers, school administrators, babysitters, health care workers and relatives.
"That's really what helped us while we were in Cleveland to just ease our minds and realize, this isn't so scary," William said.