Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is a condition that involves sudden, severe behavior and mood changes in children. Very quickly, sometimes overnight, they start to have obsessive-compulsive disorder (OCD) symptoms like urgent, unwanted thoughts. Or, they may abruptly avoid eating. Often, they develop tics, movements such as head turning or rapid blinking that they can't control.
AAP policy explained
The symptoms of PANS can be frightening for both the child and their family. Getting the care and support they need can also be challenging. There is too little evidence about causes and treatment for PANS. But the symptoms and impact of the condition are very real and painful for families seeking care.
The American Academy of Pediatrics (AAP) brought together experts in a variety of specialties to take a broad, deep look at existing research related to the condition. We've created a
clinical report that outlines the most proven ways to help families affected by PANS. We also point to the urgent need for more research.
What causes PANS?
While the cause of PANS remains unclear, in some cases it may be triggered by a recent infection. It may also be tied to autoimmunity, when the body attacks its own healthy cells.
What is PANDAS?
PANS is an "umbrella" condition that includes PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). PANDAS was first described in the 1990s, more than a decade earlier than PANS. This came after researchers found that 5 children with sudden-onset OCD and tics all had recently been diagnosed with a strep throat (Group A streptococcus, or GAS) infection.
Other infections have been suggested as possible triggers of PANS symptoms. But not all cases of PANS have clear links to infection.
Is PANS an autoimmune disorder?
PANS may also be tied to a group of conditions that involve
autoimmune issues. Examples include,
autoimmune encephalitis, Guillain-Barré syndrome and Sydenham chorea. With these conditions, the immune system mistakes healthy brain or nerve cells as a threat and attacks them.
Some scientists also believe a child's genes, history of trauma and other factors in their medical history play a role in PANS.
How do you know if OCD or tics is related to PANS?
Most children with OCD, tics and symptoms that affect brain function, emotion and mood (called neuropsychiatric symptoms) likely have conditions unrelated to PANS. What sets PANS apart is the rapid onset of these symptoms.
PANS criteria: key signs & symptoms
1. Sudden and dramatic start of:
OR
2. In addition, the child suddenly develops at least 2 of the following symptoms:
Anxiety
Sudden, extreme mood changes, overreactions and/or depression
Irritability, aggression, and/or severe
oppositional behaviors
Loss of
developmental milestones and acting younger than their age
Decline in school performance
Issues like increased sensitivity of senses like sound, touch or smell; hallucinations; learning troubles like
dysgraphia; movement or vocal tics
Problems with sleep or other issues like or enuresis (wetting themselves) that are not better explained by a known health problem.
Diagnosing PANS
The doctor will ask about your child's medical history, including when they first developed OCD-like symptoms. This gives important clues. OCD occurs in 1% to 3% of all children and adolescents; though much less commonly in younger children compared with adolescents. In contrast, disease-related OCD, such as with PANS, is most common in children who have not yet reached puberty.
Physical and mental health exams are also key. Lab and imaging tests are usually done only with symptoms that may indicate autoimmune encephalitis.
Should all children with PANS symptoms be tested for strep?
The AAP does not recommend universal testing of all cases of PANS-like symptoms for group A strep. The data are not strong enough to support benefits of such universal testing.
Treatment for PANS: what the AAP recommends
We recommend mental health treatments such as
cognitive behavioral therapy (CBT) as first-line treatments for many symptoms of PANS. CBT and other psychological therapies are proven to help children manage their symptoms of OCD, other types of anxiety, tics and avoidant or restrictive food intake disorder (ARFID). Some antidepressant medications can also help with OCD and anxiety.
Antibiotics are only recommended to treat PANS if a child has both clinical symptoms and a positive
throat culture test for group A strep infection—and only for 10 days. There is no robust evidence base to support long-term antibiotic treatment for children with strep throat.
Unproven treatments for PANS that are not recommended
There are various other treatments that are sometimes suggested for children with PANS. Many of these are treatments for other conditions thought to have possible connections to the syndrome. However, these are not proven to help children with PANS symptoms. Examples include:
Treatment for Lyme disease
Lyme disease is sometimes suggested as a possible trigger for PANS. This tick-borne disease can have symptoms that are similar to those of PANS, including OCD. However, there have been no clear-cut cases of PANS linked with Lyme disease. Testing or treatment for Lyme disease for children with PANS is not recommended at this time.
Tonsillectomy and/or adenoidectomy surgery
Surgery to remove the tonsils and adenoids has been recommended to help reduce the number of strep throat infections a child gets. Research has yet to show this to be effective, though, and these surgeries are not recommended treatments for PANS.
Treatment for sinusitis and/or influenza
The connection between PANS and sinus infections or influenza (flu) is not supported by evidence. Treating a child with PANS for sinusitis or flu is not recommended unless they meet the usual criteria for these respiratory illnesses.
Treatment for
M. pneumoniae
There are no well-documented cases connecting Mycoplasma pneumoniae (M. pneumoniae) and PANS. Macrolides, an antibiotic treatment for M. pneumoniae, has been tried as a PANS treatment. However, at this time there is no need to treat for
M. pneumoniae unless a child with PANS has an
M. pneumoniae infection.
Treatment for other viruses & infections
Other infections have been mentioned for possible links to PANS. Examples include Epstein-Barr, herpes simplex, enterovirus, varicella and dental and gastrointestinal infections. But it is hard to determine whether these have any connection to PANS. They are all very common in children. So, treatment for these conditions is not recommended for children diagnosed with PANS.
What about immunomodulatory therapies for children with PANS?
"Immunomodulatory" therapies are sometimes considered for children with more extreme symptoms of PANS. These therapies target immune system activity and inflammation, which theories suggest may be linked to PANS symptoms.
Examples of these aggressive therapies include:
Immunosuppressant drugs meant to prevent your immune system from attacking healthy cells and tissues by mistake, such as rituximab and micophenolate mofetil
Intravenous immunoglobulin (IVIG) treatment, which puts healthy donor antibodies into the bloodstream through a vein
Therapeutic plasma exchange (TPE), used to remove certain antibodies from the blood
These therapies can have serious side effects. They should only be used in rare cases and involve the child's primary doctor and a team of pediatric subspecialists experienced in treating children with PANS and similar conditions. In addition, these treatments should only be given in pediatric infusion centers or inpatient hospital settings where children can be watched closely for safety.
Immunomodulatory therapies are ideally only used in carefully controlled clinical trials to improve our understanding of, and evidence for, effective treatment for PANS.
Remember
As pediatricians, we are committed to working with families, other physicians and scientists to learn more about PANS. We remain eager to develop a dependable and clear evidence base—one that can better guide diagnosis, treatment, care and support for children affected by the condition.
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