Good Greetings:
I found this to be of value... perhaps you know someone that is going through this...
--elizabeth
Local boy "cured" of OCD
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Beth Maloney had a healthy, bright son for 12 years. Then, overnight, the son who had plenty of friends couldn't walk straight or sleep in his own bed.
What Maloney didn't know at the time was that her son, Sammy, was suffering from a rare disorder known as PANDAS. It would take her two years of fear, of a mother's heartache, to find the cause of her son's changes.
What is PANDAS?
According to the National Institute of Mental Health, PANDAS or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections often mimics obsessive compulsive disorder or Tourette's Syndrome. Children with PANDAS often experience a "dramatic, 'overnight' onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a strep throat infection."
For information:
Today, though, she's offering hope to other parents through her book, "Saving Sammy: Curing the Boy Who Caught OCD." Published by Random House, the book has taken Maloney from the "Today" show set to "Inside Edition," to libraries in southern Maine to share her story.
Because so little is known and even less is understood about PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, Maloney is telling her story to help others find answers. She's doing it to give other parents their children back. And she's doing it for Sammy.
Sammy is Maloney's middle son. He was a good student, gifted in math, when everything changed.
"It was the summer between fifth and sixth grades," she remembered.
After her divorce, she and the boys were moving from the house where the boys had grown up.
Maloney recalled the first signs that something was wrong with Sammy.
"He was walking with his eyes shut, feeling his way," she said. "I thought he was just memorizing things."
But the symptoms didn't end there. Once in the new house, Maloney said, Sammy wouldn't come upstairs. He wouldn't sit and eat at the kitchen table. Instead of walking, he would hop. And everything bothered him.
"One day I heard him outside," Maloney said. "He was yelling at the squirrels to shut up."
Sammy told his mother he had a "mental itch" he couldn't scratch. It made him do irrational things like bang his head against the glass doors or walk in a certain pattern.
"I took him to see a local psychologist," Maloney said. "The psychologist thought it was stress, from the divorce, from the move, from his older brother going to boarding school."
Sammy wouldn't shower, wouldn't touch light switches. He would rub his whole body on the wall, like an animal.
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And then it got worse. On a family trip, Sammy ran away.
"At that point I was done with the stress theory," Maloney said.
Sammy's psychologist gave Maloney a list of psychiatrists and suggested she try to get Sammy seen. She went through all the psychiatrists in Maine on the list, she said, but none could see Sammy.
"Finally, one said he could see him in three months," she said."In three months he could be dead. That's how serious this was."
Instead, Maloney called psychiatrists in New Hampshire and finally found one who would see Sammy. That doctor gave Maloney a diagnosis: obsessive compulsive disorder. He put Sammy on Zoloft to help manage the urges.
"For a full year, he never improved," Maloney said.
His classmates, in the meantime, moved on to the Middle School of the Kennebunks and sixth grade. But Sammy had gotten so bad that he could no longer go to school. One thing he never missed, though, was a math meet.
"It might take him two hours to get from the house to the van and an hour to get from the van to the room where the meet was being held," Maloney said. "But he remained brilliant throughout."
After a meet, though, Sammy would fall apart for days, Maloney said.
By seventh grade, Sammy wasn't in school, but he was still participating in the math meets. Maloney said the team went on to win a meet in Portland and Sammy came to her afterward with a plan.
The plan was for Sammy to take the bus to MSK, where he would return triumphant with his teammates. There, he would catch the bus from school back to his house. But things didn't work out as planned.
"The phone rings and I can hear Sammy screaming in the background," Maloney said. "He didn't make his bus."
Instead, teachers told her, Sammy had gotten distracted by walking a pattern in the bricks on the way to his bus. He was still stuck on walking the pattern when the bus left without him.
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Maloney jumped in her car for the ride to school and realized she had made a decision.
"Crying, I called my mom," she said. "I said, 'I can't do this. I'm going to have to find him a placement somewhere or hire a psychiatric nurse to come to the house.'"
Hanging up, she received a call. It was from a colleague of her mother's who asked her a question that would change everything. "She said, 'Have you ever had him tested for strep?,'" Maloney said.
The woman explained how her son had the same symptoms as Sammy for 10 years before doctors discovered they were caused by a strep infection.
They had him tested and the next day they got the news: Sammy had tested positive for strep. Maloney then decided to take Sammy to New Jersey to be treated by her mother's colleague's pediatrician. Sammy needed treatment with large doses of Augmentin for all of his seventh-grade year, Maloney said. But by February, he was tutored, making up all of sixth and seventh grade by the time school started in the fall.
And in September, Sammy started eighth grade along with the rest of his class. In high school, he served as the student council representative to the school board. Chairman Maureen King remembers him as confident and funny.
"He had a great sense of humor," she said.
Today, Sammy is a freshman at Carnegie Mellon University, where he studies computer engineering. While some of his symptoms return if he catches strep, they disappear once he takes antibiotics.
"I don't remember too much," he wrote in an e-mail of the time he spent sick. "I don't really think about it a lot, and I've been better for five years now, which is a lot for someone who's only 19."
Sammy has written his own account of his struggle, which Maloney said might be included in the paperback version of the book.
"I think it's an important story to tell because so few people know about PANDAS," Sammy wrote. "Too many people with PANDAS are treated like OCD or Tourette's Syndrome patients. Getting the right treatment could really save a person's life."
That's why Maloney decided to write the book and why she personally answers every one of the now hundreds of e-mails she receives. She's even compiling a list of doctors who treat PANDAS.
Sammy, she said, approves of her work.
"He doesn't want anyone else to go through what he went through."
http://www.seacoastonline.com/articles/20091008-LIFE-910080340