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I'm having to copy and paste the article rather than link it since my newspaper only has it online in the pay version.

 

This is taken from The Westerly Sun in RI. My son is so thrilled! They put the article on the front page, above the fold!

 

Family pushes for awareness of strep-induced disorder

 

■ Discovery Health to feature a special program on PANDAS.

 

By NANCY BURNS-FUSARO

Sun Staff Writer

A S A BRADFORD SCHOOL Special

education teacher, Rebecca Jones is used to observing the behaviors of young people. So it was no surprise that she was able to identify symptoms of mild Attention Deficit Disorder in her son, Matthew. It was a surprise however, when Matthew’s behavior took a turn for the worse — a sudden and dramatic turn. Following a bout with strep throat says Jones, her son’s behavior grew strange and extreme. “He was totally freaked out,” she recalls. He started tapping his feet, playing with his hair obsessively and he began experiencing fears and anxieties, says Jones — “unrealistic fears and anxieties.” For example, she says, there was Matthew’s concern for the family dog. “He was so afraid that the dog would get loose, run away and get run over that he would grab him and hold on to him,” Jones said. “And he wouldn’t let go.”

Assuming her son’s behavior was due to the stress of moving to a new school coupled with his parents’ impending divorce, Jones brought Matthew to a social worker/ counselor for an evaluation. The counselor suggested Matthew first visit Dr. Louise Kiessling, MD, FAAP at Pawtucket’s Memorial Hospital, and be tested for something that sounds more zoological than psychological — pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections, or PANDAS. “She just wanted to rule it out before we treated the symptoms as behavioral,” says Jones who was unfamiliar with the disorder.

Kiessling is a developmental/ behavioral pediatrician and Professor Emerita of Pediatrics and Family Medicine at the Alpert Medical School of Brown University. She is founder/retired director of the Neurodevelopmental Center at Memorial Hospital of Rhode Island. She first wrote about PANDAS in 1989, when she observed an increase in reports of the number of children with tics following an outbreak of a strep infection. Also in the 1980s, Susan Swedo, a pediatrician at the National Institute of Mental Health, came across several cases of children who seemed to have developed tics and behaviors resembling OCD, such as excessive hand washing, overnight.

Swedo noticed that the children in all the cases had recently recovered from strep throat. The traditional strep symptoms were gone, but when she did laboratory tests, Swedo found the children’s blood still contained high levels of strep antibodies. Perhaps most compelling, the symptoms seemed to abate after renewed treatment with antibiotics. Swedo became convinced that the symptoms were the result of an overactive immune response to strep bacteria. She suggested a new diagnosis called “pediatric autoimmune neuropsychiatric disorders associated with strep.” When Matthew tested positive for the disorder, a whole new world opened for the Joneses. Soon they were connected with families around the country dealing with PANDAS, including the Maloney family in Maine.

Beth Maloney, a lawyer in Kennebunkport, has become a sort of unofficial spokeswoman for PAN-DAS. Her recent book, “Saving Sammy, Curing the Boy who Caught OCD,” tells how she discovered that PANDAS was at the root of her son Sam’s extreme and erratic behavior. Once Sam was diagnosed and began taking antibiotics, she writes, his behavior improved remarkably. Her discovery, she says, took years to figure out but has a happy ending. After missing his entire sixth and seventh grade due to bizarre behaviors associated with PANDAS, Sam Maloney is now a dean’s list student at Carnegie Mellon University. The Maloneys will be the subject of a Discovery Health channel premiere of, “Mystery Diagnosis,” airing Monday night at 10 p.m. The program will be repeated Tuesday at 2 p.m., Saturday at 5 p.m. and 9 p.m., and again on Sunday, June 20 at 1 p.m.

Some researchers, including doctors at the National Institutes of Health, believe that natural antibodies produced by the body to fight an undiagnosed strep infection can attack the brain of some patients and trigger a sudden onset of behavioral disorders, such as OCD and Tourette’s syndrome. The disorder is sometimes treated with simple antibiotics.

There are also neurological researchers who argue there is not enough hard evidence 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.

Keissling is cautious when discussing PAN-DAS and is concerned that some parents of children with OCD or other behavioral issues might think that by treating the child with antibiotics, the symptoms will magically disappear. There is an abundance of misinformation she says, especially on the Internet. “It’s complicated,” says Keissling. “It’s not simple and it’s controversial to some degree.”

“I don’t see this as complicated at all,” counters Maloney. Because she doesn’t have a medical degree, she says, she has never felt constrained, never encumbered. Her goal was singular, she says — to find a cure for her son. “I was not bound by traditional medical theories or reasoning,” she explains. “I had everything to gain and nothing to lose. I went for it.”

More and more people are finding that seemingly normal kids can change almost overnight after being exposed to strep, she says. “They have noticed how different their child acts after a sore throat. They seem hyperactive, moody and often keep blinking their eyes,” Maloney says. “The child becomes very particular about the way they do certain things. Their teachers say they are not paying attention in class, and they’re having trouble reading students’ writing.” Of the nearly 8,000 emails she has received from parents, Maloney says the vast majority have discovered that strep is at the root of their children’s problems. A few have been devastated to learn that there is no connection, she notes.

Rebecca and Matthew Jones are among those who are grateful to have learned about PANDAS and hope to raise awareness of the disorder that has so effected their lives. They are encouraging teachers, parents and doctors to watch Monday’s program, not just to understand what they’ve been experiencing since Matthew’s PANDAS diagnosis, but to alert people to the possible connection between a bout with strep and strange behavior.

“We just want people to have an awareness,” says Jones. “And at least to know enough to ask your doctor.”

“It’s not commonly understood,” she adds, “and it can be very, very frustrating.”

Matthew, a fourth grader at Westerly’s Dunn’s Corners Elementary School, is tall, thin and friendly. He is not at all shy about sharing his experience with PANDAS and is comfortable demonstrating how he used to pretend his fingers were scissors and how he would obsessively chop at clumps of his hair.

Although his symptoms have abated, Matthew does have recurrences, often during school. To help his classmates and teachers understand PANDAS, Matthew made a Power Point presentation explaining the symptoms of the disorder. “His teachers have been wonderful,” says Rebecca, “and his classmates have been really supportive.”

And protective. When an adult visitor to the classroom suggested Matthew stop tapping his feet, his fellow students came to his aid. “He can’t,” they told the visitor in unison.

Reached by telephone Saturday morning from her home in Maine, Maloney called Matthew “incredibly brave.” “It takes a certain kind of courage to say, ‘This is what’s going on with me,’ at that age,” she says.

Maloney appeared with her son Sam on NBC’s Today Show last fall to discuss PANDAS, spoke recently at an autism convention in Chicago, and plans to speak to the International OCD Foundation in Washington, D.C. next month. “We’ve opened a lot of doors,” says Maloney, who has Facebook pages for herself and her book.

“We’ve caused people to look at mental health differently, to ask, ‘Is this a mental health issue or was it caused by an infection?’” For more information about PANDAS, visit http://intramural.nimh.ni h.gov/pdn/web.htm, www.pandasfoundation.o rg or savingsammy.net.

nbfusaro@thewesterlysun. com

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I'm having to copy and paste the article rather than link it since my newspaper only has it online in the pay version.

 

This is taken from The Westerly Sun in RI. My son is so thrilled! They put the article on the front page, above the fold!

 

Family pushes for awareness of strep-induced disorder

 

■ Discovery Health to feature a special program on PANDAS.

 

By NANCY BURNS-FUSARO

Sun Staff Writer

A S A BRADFORD SCHOOL Special

education teacher, Rebecca Jones is used to observing the behaviors of young people. So it was no surprise that she was able to identify symptoms of mild Attention Deficit Disorder in her son, Matthew. It was a surprise however, when Matthew’s behavior took a turn for the worse — a sudden and dramatic turn. Following a bout with strep throat says Jones, her son’s behavior grew strange and extreme. “He was totally freaked out,” she recalls. He started tapping his feet, playing with his hair obsessively and he began experiencing fears and anxieties, says Jones — “unrealistic fears and anxieties.” For example, she says, there was Matthew’s concern for the family dog. “He was so afraid that the dog would get loose, run away and get run over that he would grab him and hold on to him,” Jones said. “And he wouldn’t let go.”

Assuming her son’s behavior was due to the stress of moving to a new school coupled with his parents’ impending divorce, Jones brought Matthew to a social worker/ counselor for an evaluation. The counselor suggested Matthew first visit Dr. Louise Kiessling, MD, FAAP at Pawtucket’s Memorial Hospital, and be tested for something that sounds more zoological than psychological — pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections, or PANDAS. “She just wanted to rule it out before we treated the symptoms as behavioral,” says Jones who was unfamiliar with the disorder.

Kiessling is a developmental/ behavioral pediatrician and Professor Emerita of Pediatrics and Family Medicine at the Alpert Medical School of Brown University. She is founder/retired director of the Neurodevelopmental Center at Memorial Hospital of Rhode Island. She first wrote about PANDAS in 1989, when she observed an increase in reports of the number of children with tics following an outbreak of a strep infection. Also in the 1980s, Susan Swedo, a pediatrician at the National Institute of Mental Health, came across several cases of children who seemed to have developed tics and behaviors resembling OCD, such as excessive hand washing, overnight.

Swedo noticed that the children in all the cases had recently recovered from strep throat. The traditional strep symptoms were gone, but when she did laboratory tests, Swedo found the children’s blood still contained high levels of strep antibodies. Perhaps most compelling, the symptoms seemed to abate after renewed treatment with antibiotics. Swedo became convinced that the symptoms were the result of an overactive immune response to strep bacteria. She suggested a new diagnosis called “pediatric autoimmune neuropsychiatric disorders associated with strep.” When Matthew tested positive for the disorder, a whole new world opened for the Joneses. Soon they were connected with families around the country dealing with PANDAS, including the Maloney family in Maine.

Beth Maloney, a lawyer in Kennebunkport, has become a sort of unofficial spokeswoman for PAN-DAS. Her recent book, “Saving Sammy, Curing the Boy who Caught OCD,” tells how she discovered that PANDAS was at the root of her son Sam’s extreme and erratic behavior. Once Sam was diagnosed and began taking antibiotics, she writes, his behavior improved remarkably. Her discovery, she says, took years to figure out but has a happy ending. After missing his entire sixth and seventh grade due to bizarre behaviors associated with PANDAS, Sam Maloney is now a dean’s list student at Carnegie Mellon University. The Maloneys will be the subject of a Discovery Health channel premiere of, “Mystery Diagnosis,” airing Monday night at 10 p.m. The program will be repeated Tuesday at 2 p.m., Saturday at 5 p.m. and 9 p.m., and again on Sunday, June 20 at 1 p.m.

Some researchers, including doctors at the National Institutes of Health, believe that natural antibodies produced by the body to fight an undiagnosed strep infection can attack the brain of some patients and trigger a sudden onset of behavioral disorders, such as OCD and Tourette’s syndrome. The disorder is sometimes treated with simple antibiotics.

There are also neurological researchers who argue there is not enough hard evidence 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.

Keissling is cautious when discussing PAN-DAS and is concerned that some parents of children with OCD or other behavioral issues might think that by treating the child with antibiotics, the symptoms will magically disappear. There is an abundance of misinformation she says, especially on the Internet. “It’s complicated,” says Keissling. “It’s not simple and it’s controversial to some degree.”

“I don’t see this as complicated at all,” counters Maloney. Because she doesn’t have a medical degree, she says, she has never felt constrained, never encumbered. Her goal was singular, she says — to find a cure for her son. “I was not bound by traditional medical theories or reasoning,” she explains. “I had everything to gain and nothing to lose. I went for it.”

More and more people are finding that seemingly normal kids can change almost overnight after being exposed to strep, she says. “They have noticed how different their child acts after a sore throat. They seem hyperactive, moody and often keep blinking their eyes,” Maloney says. “The child becomes very particular about the way they do certain things. Their teachers say they are not paying attention in class, and they’re having trouble reading students’ writing.” Of the nearly 8,000 emails she has received from parents, Maloney says the vast majority have discovered that strep is at the root of their children’s problems. A few have been devastated to learn that there is no connection, she notes.

Rebecca and Matthew Jones are among those who are grateful to have learned about PANDAS and hope to raise awareness of the disorder that has so effected their lives. They are encouraging teachers, parents and doctors to watch Monday’s program, not just to understand what they’ve been experiencing since Matthew’s PANDAS diagnosis, but to alert people to the possible connection between a bout with strep and strange behavior.

“We just want people to have an awareness,” says Jones. “And at least to know enough to ask your doctor.”

“It’s not commonly understood,” she adds, “and it can be very, very frustrating.”

Matthew, a fourth grader at Westerly’s Dunn’s Corners Elementary School, is tall, thin and friendly. He is not at all shy about sharing his experience with PANDAS and is comfortable demonstrating how he used to pretend his fingers were scissors and how he would obsessively chop at clumps of his hair.

Although his symptoms have abated, Matthew does have recurrences, often during school. To help his classmates and teachers understand PANDAS, Matthew made a Power Point presentation explaining the symptoms of the disorder. “His teachers have been wonderful,” says Rebecca, “and his classmates have been really supportive.”

And protective. When an adult visitor to the classroom suggested Matthew stop tapping his feet, his fellow students came to his aid. “He can’t,” they told the visitor in unison.

Reached by telephone Saturday morning from her home in Maine, Maloney called Matthew “incredibly brave.” “It takes a certain kind of courage to say, ‘This is what’s going on with me,’ at that age,” she says.

Maloney appeared with her son Sam on NBC’s Today Show last fall to discuss PANDAS, spoke recently at an autism convention in Chicago, and plans to speak to the International OCD Foundation in Washington, D.C. next month. “We’ve opened a lot of doors,” says Maloney, who has Facebook pages for herself and her book.

“We’ve caused people to look at mental health differently, to ask, ‘Is this a mental health issue or was it caused by an infection?’” For more information about PANDAS, visit http://intramural.nimh.ni h.gov/pdn/web.htm, www.pandasfoundation.o rg or savingsammy.net.

nbfusaro@thewesterlysun. com

 

This is a great article! Thanks for sharing and helping to get the word out there!!

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I just felt like saying this is an extremely well written article, not just for the sake of PANDAS, but it resonated responsible and truthful to me, .....very nice Rebecca. :)

 

(altho not sure, but they may have gotten those dates wrong, no biggie, but I think it 1999 that swedo did the study rather than 1989...)

Edited by faith
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