Dravet's Syndrome, a rare form of Epilepsy

It is a day Christina Reynoso recalls with perfect clarity. On Dec. 14, 2007, she took her 4-month-old son, Christian, to the doctor to catch up on his shots. That evening, he began convulsing and was rushed to Texas Children's Hospital, where he suffered uncontrollable seizures for almost two days.

"I had never seen anyone go into a seizure," Reynoso said. "I was freaking out. Even though they had given him medication, he kept going right back into the seizure."

Christian recovered, but doctors diagnosed him with a rare form of infant epilepsy, called Dravet's Syndrome.

A single mother, Reynoso and her two older sons, 9-year-old Isaac and 8-year-old Joel, were forced to move in with her mother in Conroe to be closer to a hospital.

"It was very emotional. We almost lost him. I don't think anyone should have to go through that," said Maria Barcenas, Reynoso's mother.

'It's a constant fear'Now, every time 16-month-old Christian twitches, rolls his eyes or has a half-second hesitation in his walk, they worry a seizure could follow.

"It's constant fear," Reynoso said. "You don't sleep well at night because you're watching him. Someone has to constantly be with him and watching him. It's opened up my eyes.

"You take things for granted. With the other two boys, I don't remember waiting for their first steps or words, but with him I'm always waiting to see if he's delayed or anything. It's so much more involved."

Not much left for ChristmasThe financial burden also has begun to weigh heavily on the family. Every hospital visit is at least $100 and each test costs $250. Every two to three months, Christian needs an EKG, an MRI or a CAT scan.

"It's expensive. I have insurance, but I spend $100 a month just on his medication," Reynoso said. "I put that before the car payment, before everything else. I'm so behind on bills. Always borrowing money for this bill, already late on that bill."

With Christmas coming, Reynoso hopes Goodfellows will help provide a few presents for her sons.
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Barcenas said Christian's illness has had a big impact on his brothers.

"They automatically know to come downstairs, put on their shoes and they're in the car before we are," Barcenas said about the family's midnight runs to the hospital.

Barcenas calls her eldest grandson a hero. When Christian began to have a seizure at the baby sitter's house, Isaac knew to administer his brother's medication to stop the convulsions.

Every day is planned around Christian. Heat agitates his epilepsy, meaning if it's sunny outside, the family stays indoors. During Hurricane Ike, Christian needed air conditioning, so Reynoso spent nights sleeping in her car with her son, using what little gas they had to cool him.

Reynoso said the seizures have changed Christian's personality. Now older and dealing with the illness, Christian is happy, but more sensitive, Reynoso said.

"Whenever he has a seizure, he's like a different person," she said. "He's real down. It takes him awhile to recuperate."

Looking to the futureReynoso hopes to move closer to Houston soon to be nearer Texas Children's Hospital and her job as a general manager at a Wendy's. The doctors cannot promise her anything but more tests and waiting.

"They're not able to foresee if he's gone through all the turbulence," she said. "They don't know if he'll grow out of it, but they think he'll deal with it for the rest of his life."

Almost a year since his first seizure, Reynoso said every day she watches for a twitch or a tremor signaling an episode.

"I thought it would be one little seizure and he'd get over it," she said. "Never in a million years would I have thought this would happen to my son. Every day is just waiting to see what happens."

kimberly.stauffer@chron.com