Pediatric Acute-Onset Neuropsychiatric Syndrome, known as PANS, is a condition characterized by sudden, severe behavior and mood changes in children. With PANS, a child may start to have obsessive-compulsive disorder (OCD) symptoms quickly, seemingly overnight. These symptoms can include urgent, unwanted thoughts, abrupt avoidance of eating, or even development of tics – uncontrollable movements like head turning or rapid blinking.
A sudden onset of these strange symptoms, seemingly out of no where, can be frightening for both the child and their family. There is not enough evidence yet about the cause of PANS or how to treat it. This makes getting care and support challenging. But, your child’s symptoms are real and the impact of this condition on them and your family is very real and can be quite painful for families struggling to find care. The American Academy of Pediatrics brought together a team of experts to create a clinical report outlining proven ways to help families affected by PANS and to emphasize the importance of more research for this condition.
Causes
The exact cause of PANS is still unclear, but in some cases it can be triggered by a recent infection. It could also be tied to autoimmunity where the body attacks its own healthy cells.
Definition
PANS is an umbrella term that includes PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). PANDAS was first discovered in the 1990s, over a decade before PANS. This discovery happened when researchers found 5 children with sudden-onset OCD and tics that had all recently been diagnosed with strep throat (Group A streptococcus, or GAS). Some suggest other infections could be possible triggers of PANS symptoms, but not all cases of PANS can be clearly linked to infection.
Autoimmune Disorder
PANS may be connected to a group of conditions that involve autoimmune issues such as: autoimmune encephalitis, Guillain-Barre syndrome, and Sydenham chorea. These can cause your immune system to mistake a healthy brain or nerve cells as a threat and attack it.
PANS may also be linked to a child’s genes, history of trauma, and other factors in their medical history.
PANS Criteria
Most children who have OCD, tics, and other neuropsychiatric symptoms that affect brain function, emotion, and mood typically have conditions unrelated to PANS. But if these symptoms appear suddenly, this may be a sign of PANS.
Key Signs & Symptoms:
- Sudden and dramatic start of:
- OCD symptoms or
- severely restricted eating
- Also, the child suddenly develops at least 2 of these 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 such as sound, touch, or smell
- Hallucinations
- Learning troubles like dysgraphia
- Movement or vocal tics
- Problems with sleep or other issues like enuresis (wetting themselves) that are not explained by a known health issue.
Diagnosing
When diagnosing PANS, your doctor will ask about your child’s medical history, including when they first developed the symptoms, which gives the doctor a lot of helpful clues. OCD only occurs in 1-3% of all children and adolescents and it is much less common in younger children compared to adolescents. But disease-related OCD symptoms, such as with PANS, is more common in pre-pubescent children.
Physical and mental health exams are also important in diagnosing. Lab tests and imaging are typically only done when symptoms may indicate autoimmune encephalitis.
Strep Testing
It is not recommended to universally test all children with PANS-like symptoms for group A strep. The data is not strong enough to support universal testing.
Treatment
Mental health treatments such as cognitive behavioral therapy (CBT) are the first-line treatment options for many PANS symptoms. These psychological treatments are proven to help manage the symptoms of OCD, anxiety, tics, and avoidant or restrictive food intake disorder (ARFID). Some antidepressant medications can also help with OCD and anxiety symptoms.
If a child has PANS symptoms and a positive throat culture test for group A strep infection, antibiotics are recommended, but only for 10 days. There is no evidence for long term antibiotic treatment of strep throat.
Unproven Treatments – Not Recommended
There are many other unproven treatments that are sometimes suggested for children with PANS. These treatments are for other conditions that are thought to have possible connections with PANS but they have not been proven to help PANS symptoms. Some examples include:
Lyme Disease
Lyme disease, a tick-borne illness, is sometimes suggested as a possible trigger for PANS and can have symptoms that are similar to those of PANS, including OCD. But, there have not been any clear cases of PANS linked to Lyme disease. Testing or treating children with PANS for Lyme disease is not currently recommended.
Tonsillectomy and/or Adenoidectomy Surgery
Surgically removing tonsils and adenoids has been recommended to reduce the number of strep throat infections a child gets. Unfortunately, research has not yet shown this is effective and these surgeries are not recommended treatments for PANS.
Sinusitis and/or Influenza
The connection between PANS and sinus infections or influenza (flu) has not been supported by evidence and treating a child with PANS for sinusitis or flu is not recommended unless they meet the usual criteria for these respiratory illnesses.
M. pneumoniae
Antibiotic treatment for Mycoplasma pneumoniae has been tried as a PANS treatment, though there are no well-documented cases connecting M. pneumoniae to PANS. There is no need to treat a child with PANS for M. pneumoniae unless they have the infection.
Other Viruses & Infections
Other infections like Epstein-Barr, herpes simplex, enterovirus, varicella, and dental and gastrointestinal infections have been mentioned as possible links to PANS. However, it is hard to determine whether any of these have connections to PANS as they are all very common in children. Treatment for these conditions is not recommended for children with PANS.
Immunomodulatory Therapies
“Immunomodulatory” therapies target immune system activity and inflammation, both of which are suggested to be linked to PANS symptoms. This is why immunomodulatory therapies are sometimes considered to treat more extreme PANS cases. Examples of these therapies include:
- Immunosuppressant drugs such as rituximab and microphenolate mofetil are meant to prevent your immune system from attacking your healthy cells and tissues by mistake.
- Intravenous immunoglobulin (IVIG) treatment puts healthy donor antibodies into the bloodstream through a vein.
- Therapeutic plasma exchange (TPE) removes certain antibodies from the blood.
These therapies are aggressive and should only be used in rare cases involving the child’s primary doctor and team of pediatric subspecialists experienced in treating children with PANS and similar conditions. There are very serious side effects possible with these treatments. 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 should really only be used in carefully controlled clinical trials to improve our understanding of, and evidence for, effective treatment for PANS.
Remember
Pediatricians and pediatric specialists are committed to working with families, other physicians, and scientists to research PANS and learn more about it’s causes and treatments to develop a clear base of evidence that will lead to better diagnosis guidelines, treatments, care, and support for children affected by the condition.