Monday, 30 May 2011

SIDS: Long QT Syndrome

Robin Williams Adams
THE LEDGER : 21, 2011

LAKELAND | Robert Davis was feeling fine in early April, running the bases with his Highland City baseball team, until he suddenly fell to the ground at second base.
Becka Engle sits with her son Robert Davis, 9, at their home in Lakeland. Robert recently had a pacemaker/defibrillator implanted put in to keep his heart on track.
"We thought he did a belly flop and lost his breath," Becka Engle said.
In addition to the implanted device, Robert also takes beta blockers, drugs that block or reduce stimulation of the heart.
He's able to attend Highland Grove Elementary School, where his fellow pupils and the staff are supportive, and walk around the neighborhood.
Contact sports and swimming are off limits, however, which means no more playing third base for the Rangers, although he still attends their games.
Trivedi said fishing should be OK if he doesn't go jumping into the water.
Tyler Davis, Robert's father, said his son is adjusting well to the restrictions. He's started playing the guitar and is spending more time on video games as he waits to learn how much activity is OK.
"He's the strongest and bravest little kid I know," Davis said.
Trivedi said that within two or three days in the hospital, Robert had about come to terms with it.
‘‘I have adult patients who can't do that," said Trivedi, who is with Pediatric Cardiology Associates.
He's still a kid, however, and he's tempted to press the boundaries. When other relatives were swimming at a family event, Robert wanted to at least put his feet in the water. Then he wanted to sit on the steps.
"You have to tell a 9-year-old not to be a 9-year-old," said his stepfather, Jeff Engle.
After he collapsed at the baseball field, Robert was taken first to Lakeland Regional Medical Center.
LRMC's pediatric cardiologist, Dr. Jonathan Reich of Watson Clinic, was on vacation, Becka Engle said, but LRMC was able to transmit Robert's EKG results to him.
Reich said Robert had "all the signs of long QT" and needed to be transferred to the children's hospital.
He spent about a week in the hospital and was out of school for two weeks. Before he returned, his family went to school to meet with his teacher and a school nurse. The meeting ended up including 15 or 20 people as other third-grade teachers, a cafeteria worker, the physical education coach and paraprofessionals who assist teachers came to learn how they could help.
He had one spell of feeling light-headed when he returned, which led to paramedics being called in, Robert said, although he said he feels "a whole lot better now."
His classmates have been very nice to him, he said, although a couple "I think are exaggerating" when they do things like turning on the water or picking up pencils for him.
With all the restrictive changes his illness has brought about, there has been one positive one, his mother and stepfather said. They had Robert baptized and began attending a church whose members reached out to them.
His mother was waiting to let him decide about baptism on his own. With the impending pacemaker/defibrillator surgery, however, family members wanted to go ahead with baptism.
In response to a request, the Rev. Andy Oliver, associate pastor at First United Methodist Church, drove to St. Joseph's Children's Hospital the day of the surgery and baptized Robert. The head of its children's program prayed with them and saved Robert an Easter basket, Becka Engle said.
Robert has a new nickname, the "battery operated boy," and family members said they're taking the doctor's recommendations very seriously.
"Most people don't get a second chance," Jeff Engle said

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