Parents find it difficult to get PANDAS diagnosed, treated

Parents find it difficult to get PANDAS diagnosed, treated »Play Video
Beth Maloney wrote the book "Saving Sammy" that chronicles her son's struggle with PANDAS. She has also spoken with the mother of the boy who is accused of wanting to attack his Albany high school. That boy's mother says her son suffers from PANDAS.

PORTLAND, Ore. – In a statement released Monday the mother of the boy accused of wanting to attack his Albany high school with bombs and guns revealed that her son suffers from a rare medical disorder called PANDAS.

Grant Acord, 17, appeared in court Tuesday on charges that included attempted aggravated murder, manufacture and possession of a destructive device and possession of a deadly weapon with intent to use against another person. He was charged as an adult.

PANDAS is an acronym that stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.

The illness is believed to be the result of a very common infection. It starts as a reoccurring strep infection, which is sometimes undiagnosed. In some kids the body gets confused and then attacks itself in the brain.

As was the case with Acord's mother, Marianne Fox, parents find it difficult to get their children diagnosed and then treated.

"She did call me Sunday after her son had been arrested," said Beth Maloney, author of "Saving Sammy," a book that chronicles Maloney's son's struggle with PANDAS.

Fox first reached out to Maloney in the fall of 2011 after she read the book.

After writing the book, Maloney found she wasn't alone.

"I received over 20,000 emails. And have received emails from families including another family in Portland, Oregon, where it wasn't until they eradicated the strep everywhere, including the family dog, that they're child recovered," she said.

Doctors at Doernbecher Children's Hospital say the infection can be carried through humans and animals.

"What we'll see is people who are functioning pretty well who suddenly have a dramatic deterioration that become obsessed or concerned with a very specific and unusual idea, thought or behavior," said Dr. Ajit Jetmalani, head of the child psychology department at Doernbecher.

The symptoms include obsessive compulsive behaviors, mood swings, irritability, separation anxiety, and decreased abilities in math and handwriting.

According to Maloney, Fox said the antibiotics to treat PANDAS weren't working.

She was trying to switch insurance to get her son covered for a very costly intravenous treatment.

"This is a really serious disorder and reluctancy among so many in the medical community to recognize that an infection can cause illness is frustrating," Maloney said.

Only a handful of doctors in our area have experience treating PANDAS. To prevent it, doctors say you need to stop the reoccurrence of strep in the first place. That means the child and other family members need to complete an antibiotics course.

According to Maloney, you can be cured. Her son took very high doses of antibiotics for five years. Today he is cured but that treatment doesn't work for everyone.

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