What Happened to My Child?? Part I: Learning About PANS/PANDAS

January 7, 2020 Ryan Vermeesch

What is PANS/PANDAS?

In this day and age, so many kids are coping with a variety of mental health challenges, including tics, obsessive compulsive disorder (OCD), attention deficit/hyperactivity disorder (ADHD), rages, prolonged tantrums, aggressive behavior, autism, sensory processing disorder, and anxiety. If a child has any of these neuropsychiatric conditions, parents and medical professionals should investigate PANDAS (Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection) or PANS (Pediatric acute-onset neuropsychiatric syndrome) as a potential underlying cause.

Both of these conditions fall under the umbrella of autoimmune encephalitis--a group of conditions that cause inflammation in the brain due to a misdirected immune response that attacks healthy brain cells. While many of these kids are placed on neuropsychiatric medications, oftentimes, these medications are not addressing the root cause of these conditions, which allows the root cause to persist.

In this article about PANS/PANDAS, we discuss both conditions’ onsets, their history, estimated occurrence, symptoms, and criteria for diagnosis.

Onset of PANDAS AND PANS

In PANDAS, the onset of symptoms typically comes suddenly after an acute Group A Streptococcal infection, or strep throat. However, this can be confusing, as the child does not always present with an acute strep throat infection. Children diagnosed with PANDAS often have symptoms, such as obsessive thoughts, compulsive behaviors, motor/vocal tics, separation anxiety, extreme mood swings, and/or handwriting changes that show up “out of the blue.” Parents can often pinpoint the day, and even time, that they saw major changes in their child. After some digging, they may find a correlation with a strep infection. (1)

PANS is a larger umbrella, which includes PANDAS, as well as acute-onset cases of OCD, oppositional defiant disorder (ODD), and/or an acute-onset of symptoms showing a major neuropsychiatric change. As PANS is a more recently-formed diagnosis, the criteria are emerging. Triggers of PANS may include mycoplasma pneumoniae, varicella, influenza, gastrointestinal infections, dental infections, herpes simplex, HHV-6, Epstein-Barr virus, enterovirus, Kawasaki disease, and any other infection aside from strep, as strep is exclusive to PANDAS. Non-infectious triggers of PANS can include environmental toxins, such as mold or heavy metals as well as metabolic disorders, such as diabetes and lupus cerebritis. (2)

PANS Hierarchy from a presentation given by Dr. Susan Swedo -https://www.pandasppn.org/cme/#2 (3)

Overall, in both conditions, an infection or other assailant on the body, such as strep, can trigger a misdirected immune response that causes inflammation on the brain. Antibodies that are triggered by strep or another infection cross the blood-brain barrier to the basal ganglia, which causes this immune response.

History

In the early 1990s, Dr. Susan Swedo, Dr. Henrietta Leonard, and Dr. Judith Rapoport, who were researchers at the National Institute of Mental Health, were studying childhood-onset OCD. They noticed there was a group of children whose OCD symptoms occurred unusually abruptly and “out of the blue” and often reached full intensity within 24-48 hours. Symptoms included vocal or motor tics, obsessive thoughts, compulsive behaviors, separation anxiety, extreme mood swings, temper tantrums, attention difficulties, handwriting changes, and academic declines, among others. They noticed that these symptoms often happened following a bacterial or viral infection. (4)

Image adapted from a presentation given by Dr. Susan Swedo- https://www.pandasppn.org/cme/#2 (3)

They named the first group of cases PITANDS (Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders). They initially chose to focus on the cases in which Group A Streptococcal infection appeared to be the trigger, because of a connection between OCD and Sydenham chorea, which is the neurological form of Rheumatic fever.

Rheumatic fever can result from untreated or only partially treated strep infections and can cause a number of issues, including heart disease (rheumatic carditis), joint disease, skin abnormalities, and neurological symptoms. This occurs because strep can be a resilient bacteria, which has the ability to hide from the immune system. It does this through molecular mimicry, which involves placing molecules on its cell walls that look almost identical to the molecules in a child’s heart, joints, skin, or brain. When the body finally recognizes strep as a threat, it attacks both the infection molecules as well as the molecules that were mimicked in the heart, joints, skin, or brain. (5)

In the case of PANS/PANDAS, the strep bacteria, or another infection, mimics molecules in the brain, which triggers an autoimmune response to attack the brain. Various infections can impact different sections of the brain. In PANS/PANDAS, oftentimes, antibodies end up attacking the basal ganglia in the brain, which is associated with voluntary movement control, procedural learning, eye movements, cognitive function, and emotional function. (6)

Dr. Susan Swedo noted that it’s important to remember that PANDAS is a SUBGROUP of a larger group of children who have OCD. In working with children who had OCD, some physicians looked specifically for evidence of a Group A streptococcus infection and when they did not find it, they mistakenly determined that PANDAS did not exist.

Because of the controversy around PANDAS, Dr. Swedo organized a meeting in 2010 among PANDAS “believers and nonbelievers” at the National Institute of Mental Health to come to a compromise for the benefit of the children and families who were suffering. PANS was the result of that conference, as many children have an infectious or environmental trigger other than Group A Streptococcus. (7)

Estimated occurrence

Statistics estimate that as many as 1 in 200 children in the United States have PANS/PANDAS (8).

Additionally in the United States, approximately 500,000 children are diagnosed with OCD, and approximately 180,000 children are diagnosed with Tourette Syndrome. Also, at least 1.5 million children are diagnosed with anxiety, a serious phobia, OCD, or bipolar disorder in a given year. (8)

If a child is affected by another developmental condition, such as autism, ADHD, sensory processing disorder, OCD, or ODD, it is worth investigating if PANS/PANDAS could be an underlying cause.

For more statistics, see here.

Symptoms

Symptoms can include, but are not limited to:

OCD (Obsessive Compulsive Disorder)
Excessive anxiety, especially separation anxiety
Depression
ODD (Oppositional Defiant Disorder)
Tics (hair pulling, motor tics, repetitive or compulsive coughing or throat-clearing when not sick)
Excessive temper tantrums
Mood swings
Behavioral regression
Developmental regression
Sensory processing difficulties
Sleep problems
Gastrointestinal pain
Bedwetting
Severe food restriction
Anorexia
Decline in handwriting skills
Decline in math skills
Hyperactivity
Inability to concentrate
Head banging
Aggression
Refusal to go to school
Increased desire to be left alone
Seizures (6)

Diagnosis

PANS/PANDAS have clinical diagnoses, which rely on presentation of symptoms. These diagnoses can also be informed by laboratory testing and medical history, but presently, there is not a 100% definitive test for PANS/PANDAS. Typically, for a PANDAS diagnosis, all five of the following criteria must be met (9):

http://pandasnetwork.org/medical-information/

The proposed PANS criteria for diagnosis are as follows (9):

http://pandasnetwork.org/medical-information/

PANS/PANDAS can be both devastating and confusing conditions. Knowledge and awareness of these conditions are growing among families and practitioners, but still much more limited than they should be. It’s important to spread awareness and advocate for your child to allow them to get the help they need.

At Genesis Performance Chiropractic, we work closely with families and other medical practitioners to identify if PANS/PANDAS is a root cause of a child’s symptoms and support the child’s body in healing and recovery.

While this article overviews the history, symptoms, and basic criteria for diagnosing PANS/PANDAS, you may be wondering why some children can have strep or another infection without having PANS/PANDAS, while others have their lives completely altered.

Look out for the next article in the series to review potential causes of PANS/PANDAS.

Works cited: