Just a few weeks ago, on October 9, patients, their families, and healthcare workers came together for PANDAS/PANS Awareness Day. The purpose of the day is to spread awareness and bring understanding to a disorder that is as yet largely unknown even as experts begin to understand more about it.
PANS, pediatric acute-onset neuropsychiatric syndrome, and PANDAS, pediatric autoimmune neuropsychiatric disorder associated with Streptococcus, are two disorders that have been present for some time, which can cause drastic behavior changes seemingly overnight.
PANDAS occurs when a strep infection triggers an immune response that results in inflammation in a child’s brain. As a result of the inflammation, there’s a relatively sudden onset of behavioral changes, including OCD, anxiety, personality changes, and more. PANS is similar, though the trigger for the misdirected immune response can be anything from another infection, an environmental factor, or something else, including allergies. PANDAS is in effect a subset of PANS, but both lead to the same distressing behavioral symptoms in a child, and both can often be misdiagnosed.
Scary Mommy spoke with pediatric Neurologist Dr. Rosario Trifiletti of the PANDAS/PANS Institute who shed light on these diseases and shared the ten things parents need to know about PANDAS/PANS.
Symptoms of PANDAS/PANS can vary greatly, but there are symptoms you should look out for.
One of the most common symptoms of PANDA/PANS is OCD (obsessive-compulsive disorder) or anxiety that appears seemingly overnight or over the course of just a few days. However, PANDAS/PANS can present in a variety of ways: including anorexia or severe restricted eating, tics, emotional changes, mood changes, regressions, or deterioration in school performance.
In younger children, PANDA/PANS may present as severe hyperactivity.
PANDAS/PANS is not new.
The history of PANDAS/PANS can be traced back to England to as early as the 1700s, but it was first described by a doctor in the 1990s after studying a different but similar rare disorder. In 2012, the idea of PANS was officially introduced.
PANDAS/PANS is not contagious
The underlying infection, such as strep throat, may be contagious, but the way that the infection creates inflammation and causes behavior changes is not contagious.
PANDAS/PANS is treatable.
PANDAS/PANS is first treated by addressing the underlying infection, usually with antibiotics, or addressing the issue that triggered the immune response. The process of finding the underlying infection or source of inflammation can be tricky, particularly if the symptoms or behavioral changes are not first recognized as PANS.
The PANDAS/PANS institute website notes that in many cases, simple non-steroidal anti-inflammatory agents, like ibuprofen, can reduce the symptoms of PANS, but often additional antibiotics or antiviral agents are needed.
In his twenty years treating PANDAS/PANS, Dr. Trifiletti has noted that the treatment has changed, as doctors are learning more about the risk to the gut of long term, high dose antibiotics. However, some children do need preventative treatment, longer-term, low level antibiotic use, in between flares to manage symptoms.
We don’t know why some children are susceptible, but experts have theories.
We don’t yet know why some children have this misdirected immune response that causes inflammation in the brain. However, one prevailing theory, according to Dr. Trifiletti, is that children who experience PANDAS/PANS have some degree of immune-deficiency wherein they are prone to more infections. Dr. Trifiletti notes that, “We’re working very hard right now finding genes that predispose to PANS. They are all genes that have to do with the immune system.”
Getting a diagnosis can be tricky, but not impossible.
Not every pediatrician is yet aware of PANDAS/PANS or has a total understanding of it. As a result, behavior changes may be ascribed to psychiatric issues, and medications such as might get SSRIs or antipsychotic drugs are prescribed. However, if parents notice these behavioral changes overnight, it’s worth looking into whether PANDAS/PANS is involved.
Diagnosis is also made difficult because there’s no definitive test for PANDAS or PANS. Pandasnetwork.org notes that “clinical diagnosis [is] based on the collection of signs, symptoms, medical history, and laboratory findings that cannot be explained by any other neurological or medical disorders.” Blood work, bacterial and viral testing, and a diagnostic tool known as the Cunningham Panel, which helps clinicians diagnose autoimmune neuropsychiatric disorders, may be used.
Safety is the most important thing.
In the case of severe psychiatric symptoms, such as intrusive thoughts that may even be suicidal or dangerous restrictive eating, the most important focus is first on the safety of the child. Dr. Trifiletti urges parents to be sure the child is in a place where they are safe. After that, it’s worth investigating to determine whether there’s strep or another active infection, or something else causing inflammation in this area of the brain.
Family support is crucial.
On his website, Dr. Trifiletti notes that “PANDAS affects the entire family dynamic,” and he mandates that both parents attend the initial consultation and be on board regarding treatment, particularly if preventative, longer-term treatment is required.
PANDAS/PANS is not a lifelong condition.
The most common age for PANDAS/PANS to occur in children is between 6 and 10 years old, according to Dr. Trifiletti, but onset can occur in children younger than one or adults older than 21.
In most cases, PANDAS/PANS goes away once puberty is reached, around 16 or 17 years old, as soon as growth is completed.
Trust your gut.
Dr. Trifiletti stresses that it’s important for parents to consider PANDAS/PANS if they notice an abrupt change in their child, whether that change is OCD, anxiety, or some other sudden or drastic behavior change. His final advice: trust your gut instinct.