Saturday, June 07, 2008

Drevats Syndrome causes seizures

"She progressed normally the first year," said Jeff Ames. "She was an early talker, an early walker."

It was the Ames' first child, Tessa. Little did they know as parents, they'd spend so much time in the emergency room.

"Tess went through a phase where she had 300 seizures a day," Ames said. "Every time she got sick or had a temperature, she generally ended up in the intensive care."

She was almost one-and-a-half when they got a diagnosis.

"He knew it the minute we walked in. He actually didn't say she had Dravet's syndrome, he actually pushed a piece of paper that listed Dravet's syndromes pathology and it is something you do not want to read as a parent. I remember going home with Heath and reading this and saying, my God she can't have this," Ames said.

She did. Dravet's is an extremely rare seizure disorder. At age two, a major seizure. Tessa didn't walk for a year.

"I quit my job and Health quit her job and we shut down for five years and tried to make the most of the situation we had," said Ames.

Now, at age 7, the seizures have taken their toll. "A cumulative thing. Some of the seizures have caused epic brain damage and certainly, all the little seizures have a cumulative effect," Ames said.

Dravet's syndrome

By age three, seven out of 100 children will have experienced a fever induced seizure. Most won't have another one, but some are not so lucky. Marcie Frasier has more.

She's walking, but is unstable and can talk but limited.

The fear with this disease is that the seizures can last hours and the risk of heart attack even death, is very high. To keep Tessa’s seizures under control, she’s on six medications that she has to take several times a day.

They work hard in their restaurant called Cantina and are giving back with The Cantina Kids menu. Buy one of their kids meals and 100 percent of the money goes to the local hospital. They are also holding the first Cantina Kids Fun Run, for kids and their parents."It is really is one of the little life blood parent so the community, department is something you never want to know about until you are in it. We just thought it was a graceful way to get kids involved in a philanthropic way," Ames said.

Tessa still has seizures, but they are less severe. Precautions are necessary, because sun light can trigger her seizures, she must always wear sun glasses and a hat. Academically, she is at pre-kindergarten level and will most likely remain there. Considering most kids with Dravet's cannot talk or walk, she is doing wonderfully.

"Just knowing where she could be and where she is, is satisfaction for us. On a daily basis, the fact she can look at Heath and say, 'I love you mommy' what does any other parent want to hear? Right?” Ames said.


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