Misdiagnosed bipolar: One girl’s struggle to get the right treatment

By Julia Prodis Sulek

San Jose Mercury News (MCT)

Published: Wednesday, April 23 2014 12:00 a.m. MDT

SAN JOSE, Calif. — One day, Tessa Gallo was a typical sixth-grader, performing in school plays, running on the track team, goofing around with her two sisters and giggling with girlfriends at sleepovers.

The next, said her mother, Teresa, “She was psychotic and mentally retarded.”

In bizarre and frightening scenes, Tessa acted as frantic as a caged animal, darting out of the family car into traffic, jumping fences and hiding in neighbors’ bushes. At times she seemed catatonic, with food falling out of her mouth because she somehow couldn’t swallow. She repeated the same few sentences over and over, worried about her braces, wanting to go home.

And finally, she said nothing at all. For nine months, Tessa stopped talking. Not a word.

Doctors diagnosed her with bipolar disorder, prescribed psychiatric drugs that didn’t work and sent the San Jose family on a nightmarish odyssey through psych wards, group homes and isolation rooms.

Then, suddenly, more than 10 months into the Gallos’ terrifying ordeal, a pair of Stanford University doctors told the family that Tessa wasn’t bipolar at all. She was probably suffering from a tragically misdiagnosed condition that mimics mental illness in a way doctors are only starting to understand.

“I’ve seen cases like this before,” Dr. Jennifer Frankovich of Lucile Packard Children’s Hospital told the Gallos. “I think I can bring her back.”

What Frankovich, a pediatric rheumatologist, and Dr. Kiki Chang, a child psychiatrist, concluded was that Tessa likely had an infection or other trigger that caused her immune system to mistakenly attack her brain, dramatically changing Tessa’s behavior overnight. It’s a condition called PANS — pediatric acute-onset neuropsychiatric syndrome — that in some cases, if caught early enough, could be cured by commonly used antibiotics. Without early treatment, they say, children can suffer needlessly.

It would take a mother’s stubborn devotion and the conviction of two doctors willing to stake their reputation on a controversial treatment to bring Tessa back from the brink. At the same time, they believe cases like Tessa’s could help unlock the mysteries of the brain and reveal how something as common as an infection could be behind a growing number of psychological disorders.

PANS is so new and so misunderstood, that there are no reliable estimates of how many children are affected. A national PANS parent support group believes the number nationwide could be more than 150,000, or about a quarter of the children who have obsessive compulsive disorder or other tics.

But skeptics within the medical community question whether PANS even exists. At a symposium in Burlingame on Saturday, Teresa Gallo and Frankovich will try to dispel the lingering controversy that has thwarted efforts to legitimize the diagnosis, fund research and spread the word about possible treatments.

“To know how many patients are in mental institutions that have treatable diseases,” Frankovich said, “we can’t even wrap our head around this.”

———

At the Gallo home in the east San Jose foothills, Teresa Gallo dumps out a shopping bag filled with half-empty bottles of Tessa’s psychiatric drugs. Nothing worked. Not the Ativan or Lexipro for her anxiety. Not the Haldol to calm her and curb her aggression. Not the Ambien to help her sleep. They just made Tessa more manic. Her bright blue eyes turned dull and vacant.

Before Tessa’s illness, life was good for the Gallo family: Teresa worked as a Weight Watchers leader, her husband as an engineer, their three daughters attended Catholic school. They loved to entertain in their backyard and keep up with Tessa’s Girl Scouts and track meets. The household was happy and bustling.

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