When Tessa Gallo turned from a healthy teenager into a psychotic wreck with catatonic symptoms overnight, doctors first said she was over-anxious, and then decided she had bipolar disorder. She was obsessive, refusing to sleep, eat or wash, and she also became violent. However after ten months confined to psychiatric wards, two Stanford University doctors found that she had been misdiagnosed as bipolar, and instead was suffering from an autoimmune disease they believed was curable.
More specifically, 13-year-old Tessa Gallo who lives in San Jose, California, was re-diagnosed with pediatric acute-onset neuropsychiatric syndrome (PANS), a relatively new and little recognized condition that many medics currently refuse to acknowledge. It was Dr. Kiki Chang, a child psychiatrist at the highly regarded Lucile Packard Children’s Hospital in Stanford, and his colleague Dr. Jennifer Frankovich, a pediatric rheumatologist, who made the new diagnosis.
Perhaps ironically, it was Dr. Chang who founded the Pediatric Bipolar Disorders Program at Stanford School of Medicine in 1997 to increase and improve research on the disorder. And it was Dr. Chang who, after Tessa’s mother Teresa had tracked him down and begged him to see her daughter, announced that she was not bipolar after all. Apologizing for taking “this long” (four months) to see them, he told Teresa Gallo her daughter was suffering from PANS. Dr. Frankovich, who had already “seen” a number of similar cases, told Tessa’s parents she believed she could “bring her back” to normality.
What had probably happened, the two doctors said, was that she had an infection that triggered something in her immune system that resulted in severe behavioral changes. If she had been treated with antibiotics immediately, the psychiatric symptoms would likely have been suppressed. Instead, for all those months she had been treated with psychiatric drugs that had no effect. Lexipro and Ativan did nothing to ease her anxiety; Haldol did not calm her down or control her aggressive behavior. Ambien did not help her to sleep.
Tessa Gallo’s Illness
Tessa Gallo’s parents were on vacation in July 2011 when she first became ill. After three days of Tessa not eating or sleeping, her grandmother Kathy Downing, who was looking after the three Gallo sisters, called Teresa and said she had to get home to Tessa urgently, which she and her husband immediately did. They took her to ER where doctors gave her medication for anxiety and sent her home.
Previously a normal, happy and active young girl, Tessa was behaving in a typical obsessive-compulsive manner that included repeatedly wiping her hand over her face. She cried a lot and would hit people non-stop. The whole family was bruised from top to toe, said Teresa. “Tessa was not just violent, this had become an OCD passion.” Additionally, she was eating very little and often the food would just fall out of her mouth.
Instead of getting better, the apparently psychotic teenager got progressively worse. She was drinking water obsessively and had no interest in personal hygiene. Four individual psychiatrists diagnosed (or as the family now knows, misdiagnosed) her as bipolar; another thought schizophrenia might be the cause. At that point nobody even considered that she might have had a curable autoimmune disease.
By the time Tessa was seen by Dr. Chang, the pediatric bipolar guru and his colleague Dr. Frankovich in 2012, she had spent months in psychiatric wards or locked up at home for her own safety. She and her family were living a nightmare.
Diagnosis and Treatment for PANS
Having seen a boy with flu turn instantly psychotic when she was a student in the 1990s, Dr. Jennifer Frankovich had become convinced that psychiatric symptoms, including those apparent in bipolar disorder, could be initiated by some kind of biological trigger. While trained to tell parents their children were mentally ill, Dr. Frankovich said she was not happy to do this, and constantly considered the thought that an autoimmune problem might be triggering psychoses. Now she is convinced, in spite of considerable skepticism in the medical community. “One of the major challenges of PANS is that it just a very broad term right now and we believe that there may be different underlying medical causes to that set of psychiatric symptoms,” she said.
At the time they first saw Tessa, Drs. Chang and Frankovich were resolved on opening a PANS clinic at Lucile Packard Children’s Hospital. Funding was meager, and they were only operating for half a day once a week, from a room in the Department of Rheumatology. They already had about 60 patients and a waiting list that would take them five months to see. Parents of children with symptoms of anxiety and obsession that seemed to have appeared “overnight” were desperate for answers.
This made the hospital the first public facility to offer care for PANS patients. The following year they hosted the first PANS conference where they did what they could to create what they called “clear diagnostic guidelines” of the condition.
Another doctor who shared the belief that PANS was an illness was Dr. Susan Swedo of the National Institute of Mental Health (NIMH) in Washington. She, though, linked the “sudden onset” of extreme anxiety and what seemed to be obsessive compulsive disorder (OCD) to streptococcal (strep) infections. In 1998 Dr. Swedo originated the name pediatric autoimmune neuropsychiatric disorders associated with strep (PANDAS); she is now Lead Investigator into PANDAS/PANS at the NIMH.
Both Dr. Swedo and Dr. Frankovich will be speaking at a symposium on PANDAS/PANS in California on Saturday that is aimed at medical professionals, educational professionals, and parents. Dr. Swedo’s topic is PANDAS, PANS and Other Forms of Childhood-onset Obsessive Compulsive Disorder, and will cover the more recent research into “the syndrome, treatment and recovery” of these disorders. Dr. Frankovich will discuss the latest findings and new treatment protocols used at the Stanford PANS Clinic she and Dr. Chang started and now run. Her topic isPANS – A new definition of pediatric acute neuropsychiatric onsets. Teresa Gallo will also be talking about her experiences as a parent.
The Truth About PANS and PANDAS
PANS is defined by the doctors at Lucile Packard Children’s Hospital, Stanford as a “clinical diagnosis” made when children suddenly (often overnight) display neuropsychiatric symptoms that include OCD and sometimes eating disorders. Children generally become irritable, anxious and moody and find it difficult to concentrate at school. While the cause of the pediatric syndrome is not known, current thinking is that it is probably triggered by inflammatory reactions, metabolic disturbances, and various infections.
PANDAS, considered a “subset” of PANS, also displays with what they describe as “an acute onset” of neuropsychiatric symptoms. These are specifically OCD and involuntary movements known as “tics.” Patients with PANDAS also become anxious and suffer from other emotions they cannot control. In addition, they test positive for certain triggers, including peri-anal strep, strep throat, and scarlet fever.
While research is ongoing, it is believed that children who get PANDAS and PANS have “a genetic predisposition” towards the syndromes and that the stressor is “environmental,” and often in the form of infection. Triggers for PANS have not been identified.
Even though there have not been any large population studies into the incidence of PANDAS and PANS, PANDAS Network.org estimates the statistics to be at least 162,000 in the U.S.A. The highest prevalence, they state is, according to reports by families to the network, between the ages of four and nine years (69 percent), with 19 percent aged between ten and 13 years. OCD is the most common primary symptom that is described (37 percent), and strep the most common infection (81 percent). Interestingly, 70 percent of these people reported both strep-related and autoimmune illnesses occurring previously in their families. Drs. Chang and Frankovich report that they see between four and six PANS pediatric patients at their clinic every week.
Treatment for PANS
Children diagnosed with PANDAS or PANS at the Lucile Packard clinic are normally given the kinds of antibiotics commonly prescribed for strep infections. The doctors have found that these dramatically improve the neuropsychiatric disorders of many patients. Once treated, the doctors have found that symptoms that emerged overnight “can stop almost as quickly.” However, antibiotics are not always sufficient, and sometimes children also need steroids, anti-inflammatory drugs and various other treatments. Psychiatric treatment in the form of both medication and psychotherapy may also be necessary.
Yesterday Teresa Gallo said she had shared Tessa’s story to try to “help others suffering” from what is a curable disease “get help faster.” She said it was imperative that people were educated so that other doctors could help children with “psychiatric conditions and autoimmune brain diseases.” This follows a traumatic three years after her seemingly psychotic daughter, until then a “normal” teenager, was misdiagnosed with bipolar disorder. In Santa Clara County, which is close to home for her, there are no psychiatric or youth hospitals, she said: “This is wrong and unacceptable.” But, “if you give up on hope, you give up on life.” Teresa Gallo never gave up hope, and now her daughter is beginning to live a normal life again, without any fears of being bipolar.