7-year-old appearing in parade recovered from rare, painful syndrome
12:00 AM CST on Friday, November 30, 2007 By JENNIFER AREND / Special Contributor to The Dallas Morning News
MIKE STONE/Special ContributorShannon and Michael Moore (right), shown with children William (left), 3, and Benjamin, 7, were terrified when Ben was hospitalized with Stevens-Johnson syndrome. 'The biggest fear was: 'Is he going to be OK?'' Mr. Moore said. 'And then we wanted to know whether there would be permanent damage.'
In August, 7-year-old Benjamin Moore came down with strep throat, which then turned into pneumonia.
After taking antibiotics and steroids to combat the illness for several days, the Fate boy woke up to find his mouth swollen.
"I knew something was wrong," said his father, Michael Moore.
Immediately, Mr. Moore went to his computer and Googled Ben's symptoms. What he found was horrifying.
"I saw photos of people with SJS," he said, referring to Stevens-Johnson syndrome. Mr. Moore made sure not to show the photos to his wife, Shannon. "I was just hoping Ben had eaten something."
Stevens-Johnson is a severe hypersensitivity complex that can cause extensive red rashes that can develop into blisters.
"It's not a common disorder," said Dr. Bharath Thankavel, a pediatric hospitalist at Children's Medical Center Dallas who said he became attached to Ben as he treated him. "It's an immune response that forms a very complex allergic reaction that affects the skin and mucous membranes."
Ben, a second-grader at the Rockwall school district's Celia Hays Elementary, was one of the children chosen to ride in Saturday's Neiman Marcus Adolphus Children's Parade in downtown Dallas.
Renee Caskey, a child life specialist at Children's, nominated Ben for the honor.
"It was a very painful and really tough diagnosis," she said. "Ben coped really well."
Among other things, SJS can be caused by a viral infection or by a reaction to medicines. The syndrome has a wide spectrum of severity, and Ben's case was relatively mild, primarily affecting his mouth. However, SJS can spread, damage organs and cause blindness and even death.
"Often, you don't find the cause," Dr. Thankavel said, adding that SJS patients are treated almost as if they had second- or third-degree burns. Once patients are treated, they are advised to avoid certain medications to prevent another SJS occurrence.
"The biggest fear was: 'Is he going to be OK?' " Mr. Moore said. "And then we wanted to know whether there would be permanent damage. We also thought, 'Oh, my God, don't let him see himself.' "
Mr. Moore said Ben's mouth "looked like a grenade had gone off in it." Blisters covered the lining to such an extent that he couldn't eat or drink, and talking was virtually impossible.
Every night at the hospital, Ben's mouth had to be scrubbed out. It was painful, and Ben didn't want his mother to have to see his upsetting treatment. So he asked his dad to stay with him at night.
"This really did tear Shannon up," Mr. Moore said.
Even now, a few months later, Mrs. Moore said recalling the ordeal is emotional for her.
"I don't know if I can talk about it without crying," she said softly.
As Ben's mouth would heal, his lips would seal shut – forcing doctors to separate them with a scalpel. Ben spent 12 agonizing days at Children's.
Mrs. Moore said one way of dealing with Ben's condition was to spread the word about the relatively unknown condition to her friends. She is part of an online network of Collin and Rockwall county mothers, and she made sure to warn them about SJS.
Ben's condition took several weeks to heal, and he missed the first two weeks of school. For the first few weeks back, his mouth still looked red and cracked, and Mr. Moore said some classmates teased Ben, causing him to withdraw.
Slowly, Ben returned to his normal self and got back to playing football. His parents said he's doing well in school.
Ben is looking forward to riding in the parade Saturday. "I think it's going to be fun," he said.
Jennifer Arend is a Dallas-based freelance writer.
After taking antibiotics and steroids to combat the illness for several days, the Fate boy woke up to find his mouth swollen.
"I knew something was wrong," said his father, Michael Moore.
Immediately, Mr. Moore went to his computer and Googled Ben's symptoms. What he found was horrifying.
"I saw photos of people with SJS," he said, referring to Stevens-Johnson syndrome. Mr. Moore made sure not to show the photos to his wife, Shannon. "I was just hoping Ben had eaten something."
Stevens-Johnson is a severe hypersensitivity complex that can cause extensive red rashes that can develop into blisters.
"It's not a common disorder," said Dr. Bharath Thankavel, a pediatric hospitalist at Children's Medical Center Dallas who said he became attached to Ben as he treated him. "It's an immune response that forms a very complex allergic reaction that affects the skin and mucous membranes."
Ben, a second-grader at the Rockwall school district's Celia Hays Elementary, was one of the children chosen to ride in Saturday's Neiman Marcus Adolphus Children's Parade in downtown Dallas.
Renee Caskey, a child life specialist at Children's, nominated Ben for the honor.
"It was a very painful and really tough diagnosis," she said. "Ben coped really well."
Among other things, SJS can be caused by a viral infection or by a reaction to medicines. The syndrome has a wide spectrum of severity, and Ben's case was relatively mild, primarily affecting his mouth. However, SJS can spread, damage organs and cause blindness and even death.
"Often, you don't find the cause," Dr. Thankavel said, adding that SJS patients are treated almost as if they had second- or third-degree burns. Once patients are treated, they are advised to avoid certain medications to prevent another SJS occurrence.
"The biggest fear was: 'Is he going to be OK?' " Mr. Moore said. "And then we wanted to know whether there would be permanent damage. We also thought, 'Oh, my God, don't let him see himself.' "
Mr. Moore said Ben's mouth "looked like a grenade had gone off in it." Blisters covered the lining to such an extent that he couldn't eat or drink, and talking was virtually impossible.
Every night at the hospital, Ben's mouth had to be scrubbed out. It was painful, and Ben didn't want his mother to have to see his upsetting treatment. So he asked his dad to stay with him at night.
"This really did tear Shannon up," Mr. Moore said.
Even now, a few months later, Mrs. Moore said recalling the ordeal is emotional for her.
"I don't know if I can talk about it without crying," she said softly.
As Ben's mouth would heal, his lips would seal shut – forcing doctors to separate them with a scalpel. Ben spent 12 agonizing days at Children's.
Mrs. Moore said one way of dealing with Ben's condition was to spread the word about the relatively unknown condition to her friends. She is part of an online network of Collin and Rockwall county mothers, and she made sure to warn them about SJS.
Ben's condition took several weeks to heal, and he missed the first two weeks of school. For the first few weeks back, his mouth still looked red and cracked, and Mr. Moore said some classmates teased Ben, causing him to withdraw.
Slowly, Ben returned to his normal self and got back to playing football. His parents said he's doing well in school.
Ben is looking forward to riding in the parade Saturday. "I think it's going to be fun," he said.
Jennifer Arend is a Dallas-based freelance writer.
