Toddler has miracle recovery with medecine that controls his seizures

The wait for the ambulance seemed like an eternity.Amy and Christopher "Perry" Williams panicked as their nine-month-old son Jalen was unresponsive. He finally arrived at the hospital in Orangeburg, and doctors weren't sure what was wrong. He had been running a fever that night, and his older sister had a bout with meningitis.

Maybe that was it.So doctors gave Jalen a spinal tap. They took urine and blood samples. Unable to insert an IV in his arm, they stuck it in his neck. All the while, he was having a seizure, and nobody realized it.He ended up spending three days in the hospital after being transferred to Palmetto Richland, where he was diagnosed with having a seizure.

It was the beginning of a journey for Jalen that has seen him be on the brink of brain surgery to an active, talkative three-year-old starting preschool at Guinyard Elementary today."I'll take some pictures," Amy said of Jalen's first day of school. "Some moms cry when they drop their babies off to day-care or school for the first time, and I'm not going to say I'm not going to cry, but I sure will be glad to get him in school. It is a blessing. He's been through a lot, overcome a lot."

Jalen's journey started when he was just 2 weeks old. His pediatrician examined him and saw something in his eyes."Jalen went for his two-week checkup," Amy said."Two-week checkup," Jalen says, mimicking his mother."The pediatrician examined him and didn't like what his eyes were doing. Also his head was a little large for his age, so they sent us to a pediatric ophthalmologist. She ordered an MRI, and she referred us to another doctor who looked at the MRI and told us he had a brain abnormality.

The right back quadrant of his brain basically did not develop."Jalen began seeing a pediatric neurologist. The couple was told that the worst-case scenario would be that Jalen would be developmentally delayed and wasn't going to walk until he was three. "That was a lie," Perry chimed in.And if Jalen walked, he would need assistance. After his first seizure, he had a seizure about every two weeks."It was scary," Perry said."It was very scary," Amy added.

"If you never saw him have a seizure, you would never know what they looked like. He wouldn't jerk. He had focal seizures, where he would stare off into space. When they first started, they would last from the time we noticed them until the time we got to the hospital and got Ativan in him. The longest was 45 minutes. After an extended time, his right arm and foot started twitching because he had been seizing so long."With both parents working and three other children at home, it was a very stressful time. Amy said she was weary of leaving Jalen with anyone for fear they may not recognize when he was having a seizure.

Then there were the countless trips to the hospital, watching him go into and come out of seizures. Once, on the way from an eye appointment for Jalen, while Amy drove on the interstate, he began having a seizure and she had to quickly get him to a hospital. It was a life of unpredictability and fear, and that was just for his parents and family members. No one will ever truly know what Jalen went through."I just thought this was going to be something that was just going to take over our lives," Amy said. "I couldn't leave him with anybody.

It was scary leaving him in day-care because nobody knew what they (seizures) looked like. I couldn't concentrate at work. Going out without the kids was unheard of ..."Jalen interrupts. His brother and sisters have taught him how to do a popular dance called the "Soldier Boy." He wants to show his mom so he jumps around and pumps his fist as if he were on a motorcycle."At one point, we wondered if one of us would have to quit work to stay home with him," Amy continued, smiling.

Recalling all of the medications, doctor's appointments and hospital visits is like being on a merry-go-round. And, really, while doctors have pinpointed the problem, there's still no name for it. But when asked about the medications Jalen has been on, Amy can name them all. And spell them, too."What really got scary was after the first seizure. They put him on Trileptal, and he kept having them, so they increased the dosage. He still had them," she said. "Then he was put on Keppra and was still having them.

In October of 2005, he was admitted to the Medical College of Georgia in Augusta where they induced a sleep-deprived seizure. They wanted him awake so they could see what part of the brain was causing the seizures. That was scary. He was hooked up to all these monitors and had his head wrapped up like he had brain surgery so he wouldn't pull them off. He had been in the seizure for five minutes before the nurses even noticed. They gave him Dilantin. When he was discharged, he was on three medications.

He stayed on all those and also had a prescription for another so that instead of rushing to the hospital, we could administer it and it stopped the seizure."That medication was called Diastat. Amy still had some in her medicine cabinet.It's hard to pinpoint when the turning point for Jalen was. He's defied most expectations. He hasn't had a seizure since March 2006 and been weaned off all his medicine except one, the Trileptal he started with which is controlling the seizures. He walks, runs, does flips and had some mad wrestling moves.

He knows his colors, can count to 10 and loves books. He talks and talks and sings and dances and talks some more."He's done miraculous," Amy said. "He's learned to speak -- you have to really listen to him to understand what he's saying; some things are clearer than others (like when he yells "Johncena" -- his favorite wrestler -- as he does a move on an action figure he has). He'll repeat anything you say.

His vocabulary is picking up, and he surprises me with some of the things he's been asking like 'Mommy what you doing' or when I pick up my purse he says, 'Mommy, where you going.' He understands deals. I told him once 'If you're a good boy and take a nap, Mommy will take you to McDonalds.' He went to sleep because he wanted to go to McDonalds. It was the first thing he asked when he woke up."Jalen's last visit to the doctor's office was July 30, and he got a good report. With all he's been through, Amy needed the doctor's blessing before he started school."The neurologist thinks he's doing well, and I asked for his blessing for Jalen to go to school," she said. "He said, 'Oh, yes. That's the best thing for Jalen, to interact with kids, his vocabulary will pick up.' He feels like he will do just fine.""The doctors say with some tender love and care, speech therapy, that boy will be alright," Perry said proudly.Still, Amy has concerns, and who can blame her. She's worried about the teachers understanding Jalen and exercising patience if they don't. And she's worried about his medication. He has to take it twice a day, and it tends to make him sleepy."I don't want him to fall asleep during instruction," she said.Perry has the same sense of uneasiness, for Jalen and for the teachers.."Through all he's been through, I can truly say I'm proud of him," he said. "God has brought him a long way and blessed him. I hope he continues to bless him. The teachers have to deal with him, and I hope they exercise patience because it is a task dealing with Jalen. I'm just ... I'm very proud of him just to see him doing things the doctor and some people didn't think he could do. Most of all it's going to be a challenge for Jalen going to school, not only for us but for the teachers. It shows that doctors don't have the last word."Now, Jalen is a thriving three-year-old, asking every question he can think of and getting into everything he can get his hands on. He surely doesn't remember all he's been through, but his parents do, especially his mom."I was with him at all his visits," she said, thinking of what it will be like to watch him go to school with everybody else. "I watched him get stuck. Perry always had to leave the room. He couldn't stand to see it. I was there when they put that IV in his neck."Jalen whizzes by, and she engages him in an impromptu school session."How old are you?" she asks."Three," he says."Can you count for me?" she says.He counts to eight and needs a little help with nine and 10. She asks him his colors, and he correctly identifies them -- green, black, red, yellow, white."Well, what are the teachers going to teach you, Jalen?" she asked. Then, after a few moments of thought, she quips, "It might be what is Jalen going to teach them."T&D Special Assignments Writer Charlene Slaughter can be reached by e-mail at cslaughter@timesanddemocrat.com or by phone at 803-533-5529. Discuss this and other stories online at TheTandD.com.