Saturday, August 18, 2007

Toddler is now seizures free!

While sitting in a car at a gas station outside of Atlanta, Stephanie McClain of Dayton was approached by a man. Initially becoming agitated because she didn’t have money to give, the man said something that caught her attention.

“Don’t just sit there and shake your head,” he said. “Your son is going to be okay.”

Corey McClain, son of Scott and Stephanie McClain of Dayton, was born July 16, 2004. When he was just a year old, he started having seizures. He stopped answering to his name and quit talking. He didn’t smile and never made eye contact.

“His chin would drop and he would fall on his bottom,” Stephanie said.

As his symptoms progressed, various trips to the doctor revealed nothing. By January of this year, at only 2, Corey was having between 20 and 30 seizures a day, wearing a helmet so he wouldn’t be seriously injured. Though his seizures were never in the grand mal category, in one day, Corey had 60.

“His quality of life just wasn’t good,” Stephanie said.

Stephanie, who works as a nurse at Memorial Hospital in Chattanooga, had seen seizures before but was still struck when it was her own son.

“To sit there and watch your child do that…it’s hard to do,” Stephanie said.

The McClains began seeking treatment for their son. Traveling as far as Detroit and Johns Hopkins in Maryland, and as close as T.C. Thompson Children’s Hospital in Chattanooga and Vanderbilt University Medical Center in Nashville, and after numerous tests, scans and other procedures, the McClains were left without a good explanation.

“They said he had some rare seizure disorder called West Syndrome,” Stephanie said.
According to Stephanie, tests included electroencephalographs, or EEGs. These tests record electrical activity of the brain. Corey’s early EEG readings were so poor they were barely readable.

The McClains were sent to Emory University in Atlanta in 2006. According to Stephanie, at this point, she was mad at the world and out of faith.

It was on this trip that Stephanie met the seemingly prophetic man at the gas station.

Stephanie said she didn’t even see anyone standing in the parking lot when her husband pulled the car in. While her husband was inside the store, the man appeared at her window.

Stephanie said the man had her attention when he began speaking about her son. He told her “you have to find me first and then you will find your blessings. Just believe and don’t forget where you came from.”

After returning from Emory University, Stephanie said Corey didn’t have seizures for two weeks. However, the seizures did return.

The family traveled back to Johns Hopkins in January 2007 for more tests. It was here that the McClains learned about a treatment called the Ketogenic Diet.

According to the Epilepsy Foundation, the Ketogenic Diet is one that is high on fat and low on carbohydrates, forcing the body to burn fat rather than glucose for energy.

According to Stephanie, the strict diet required that her son fast for 24 hours while in a hospital and under a doctor’s care. Stephanie described Corey as “nonresponsive” in the hospital. While there, the family was a trained on how to administer the diet. After the diet was fine-tuned, the family returned home determined to carry out their task for the remaining two years of the diet.

Since having two seizures during the week of Jan. 15, Corey has been seizure free.

The diet requires all food to be weighed, and a strict fluid restriction. In addition, Stephanie said she can only use certain soaps and sunblocks.

“It’s very strict,” Stephanie said. “He can have a Diet Coke from the can but not from the fountain because the carbonation will throw off the diet.”

Though Corey still isn’t talking and is learning basic tasks like holding hands and even playing, Stephanie said the doctors are pleased with his progress. He will be learning sign language this year and will be a part of Ms. Bunny Derlak’s class at Graysville Elementary. In addition, Corey is enrolled in a program called ABA Therapy at Lee University. This program allows for an instructor to come to the McClain’s house for 25 hours a week for intensive one on one therapy.

“The doctor said it was a miracle,” Stephanie said. “He said only 1 percent respond this well. He’s moving in the right direction.”

As the school year is starting up, the McClain family is falling into a routine. The McClain’s oldest son Tanner, 4, will start school next year. Madison, their youngest and also their only girl, is 2.
“If you saw him last year, you wouldn’t know it was the same kid,” Stephanie said. “We are so thankful for all the prayers and support.”

Though the McClains see Corey’s improvement as a miracle, Stephanie said there is a lesson to be learned.

“[I hope] this gives someone just a little bit of hope not to give up with one doctor’s opinion. Always get more opinions,” she said.

“We would have gone anywhere. Don’t just settle. He told us to believe. That’s what we’ve been trying to do— believe.”


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