Monday, December 9, 2013
KENNEBUNKPORT - One day, Beth Maloney was watching her son, Sammy, speaking to a crowd during the finals of a fifth-grade civics competition.
Beth Maloney and her son Sammy talk about her book, which chronicles his strep infection that was not immediately diagnosed.
Gordon Chibroski/Staff Photographer
Gordon Chibroski/Staff Photographer
FOR MORE INFORMATION
Read an article from the National Institute of Mental Health.
Read answers to frequently asked questions about PANDAS posted by NIMH.
Find links to recent scientific publications about PANDAS on the NIMH site.
Get more information about the disorder and Beth Maloney's book, "Saving Sammy: Curing the Boy Who Caught OCD.”
Weeks later, she could not get him to use the front door, walk across a carpet or sleep in his bed. Eventually, he would stay in his room and barely eat or bathe.
His doctors said stress had triggered an obsessive compulsive disorder, or OCD, and that Sammy would need extensive, and extended, care. But, as Maloney became nearly overwhelmed by the bizarre behaviors, she got advice that changed her life and, she believes, saved Sammy's: Check to see if he has a strep infection.
Sammy is now an articulate 20-year-old student at Carnegie Mellon University. And his mother is an author whose book, "Saving Sammy: Curing the Boy Who Caught OCD," is drawing popular attention to a controversial medical mystery.
"To think we had gone through all this and maybe he had a strep infection," Maloney remembers thinking when she first learned of the link. "I made a promise to God that I'm not going to let this happen to other people."
Sammy was one of a small but growing number of children to be diagnosed with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or PANDAS.
Many researchers, including those at the National Institutes of Health, believe natural antibodies produced by the body to fight an undiagnosed strep infection can attack the brain in some patients and trigger a sudden onset of behavioral disorders, such as OCD and Tourette's syndrome. Some doctors, including those who treated Sammy, are giving the children simple antibiotics.
Why PANDAS occurs in some patients and not others is a mystery. Some neurological researchers argue there is not enough hard evidence yet to prove that PANDAS exists at all. Even among the many researchers and doctors who are convinced that the syndrome is real, there is still disagreement about whether antibiotic treatment, after a certain point, does any good.
Sammy is used to hearing surprise and disbelief about his story. At times, he just smiles and raises his hands as if to say, "Well, how do you explain this?"
In 2002, he was a normal, bright 12-year-old who liked exploring the beach and playing in the neighborhood with his two brothers.
Beth Maloney, a lawyer with her own practice, had recently finalized her divorce from the boys' father and was moving the family into a new home. She first noticed something was wrong with Sammy when he was walking around with his eyes closed.
It was a compulsion, something Sammy's brain was telling him he had to do. Embarrassed, he told his mother he was "memorizing." Although he knew the behaviors were non-sensical, he said, "I couldn't not do any of them."
Soon, he started holding his breath, climbing over invisible walls, avoiding door handles, rugs, certain foods, the bathroom and anyone with bare feet.
Sammy's doctors had attributed the onset of OCD to stress from all the changes in his life. He took standard medications and underwent therapy.
the end of the first year, Sammy had missed all of the sixth grade and also had developed tics, or vocal and physical twitches associated with Tourette's syndrome.
Then a woman who heard the family's story suggested a test for strep, the same infection that causes strep throats and scarlet fever. It was the first time Maloney had heard of PANDAS.
Although Sammy had not had a sore throat before the OCD started, a blood test found elevated levels of strep antibody. While some doctors urged Maloney against counting on an experimental treatment, she found doctors in Massachusetts and New Jersey who were treating PANDAS cases and put Sammy on an antibiotic, Augmentin.
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