A seemingly normal 4 year old that was loving and then started showing some mild anxiety and is now so full of rage that she has been kicked out her preschool.
A 19 year old that who has been in and out of psychiatric facilities with depression and anxiety that never improves despite numerous treatments and therapies.
These are the stories of PANS/PANDAS. The impact of these intense and frightening diseases are undeniably heartbreaking for not only the child but the family. Support and care are hard to find at best and parents have to search for the answers on their own.
PANS and PANDAS are two distinct disorders that result from different infectious sources but produce similar neuropsychiatric and neurocognitive issues. They are clinical diagnoses given to children who have a dramatic and sudden onset of neuropsychiatric symptoms including, Obsessive Compulsive Disorder (OCD), Tics, or an eating disorder. Children may display a high level of moodiness, irritability and anxiety, have difficulty with schoolwork and show regressive behaviors.
Symptoms can wax and wane over time with intense periods of psychiatric and behavioral issues. Even after treatment has lessened the behavior or it has normalized, infections and environmental sources can cause a flaring of symptoms that can be temporary or bring on a full resurgence of symptoms.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. This is when an infectious trigger (such as Lyme or Tick-borne Disease), environmental factors or other possible triggers create a misdirected immune response.
This response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life-changing symptoms such as OCD, severe restrictive eating, anxiety, tics, personality changes, decline in math and handwriting abilities, sensitivities to sensory input, and more (pandasnetwork.org). These behaviors and psychiatric issues can come on with such intensity that they are often completely debilitating.
The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions. In addition to non-infectious triggers, which are yet to be fully determined, but may include metabolic disorders and environmental factors.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.The PANDAS Network (pandasnetwork.org) estimates that 1 in 200 children have PANDAS.
PANDAS symptoms in children can take on many forms. According to Swedo (2012), PANDAS syndrome in children presents as the abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake. This must be accompanied by the concurrent presence of additional neuropsychiatric pediatric PANDAS symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
Since most kids develop an immunity to strep by the time they hit puberty, PANDAS is defined as a pre-pubertal condition. In which case, onset isn’t likely to occur after adolescence but can continue to flare for unknown reasons or due to infectious exposure and environmental sources.
PANDAS patients test positive for a known trigger, such as strep throat, peri-anal strep or scarlet fever, which brings on on acute psychiatric symptoms.
Why does one child get strep without PANDAS and another get post strep infection? While we don’t know the exact answer, we do know that certain genetic and environmental conditions make chronic disease more likely. Genetic issues like, MTHFR, and weakened immune systems create an environment that is ripe for infectious disease to take hold. There is also no link between the frequency of infection and increased likelihood of PANDAS. For example, one child may get PANDAS after one strep infection, and another may get it after their fifth time. Like all bacteria, a scientific explanation as to how it works helps to better understand why PANDAS exists.
Strep is an ancient bacteria that has learned to hide in the body in order to survive. It does this by putting molecules on its cell wall that look nearly identical to molecules found in and on humans. According to NIMH, this is called “molecular mimicry” and allows the strep bacteria to temporarily evade detection. Because of the molecular mimicry, the antibodies react not only with the strep molecules, but also with the human host molecules that were mimicked. This triggers our immune system to mistakenly attack normal body tissues because of the structural similarities between a particular molecule on an infectious agent and the molecules in our own body tissues. This misguided reaction can result in inflammation in the brain, triggering the sudden onset of neurocognitive or psychiatric symptoms.
PANS/PANDAS are grouped together because they both have infectious disease sources and produce similar intense behaviors. In PANS and PANDAS, doctors believe that something mistakenly triggers the immune system to attack itself. More specifically, antibodies are triggered to attack a part of the brain called the Basal Ganglia, which is understood to be responsible for movement and behavior. This misguided reaction can result in inflammation in the brain, triggering an abrupt onset of symptoms.
PANS/PANDAS symptoms can be extreme, both initially and during flares. Some children can function enough to make it through a day at school in a way that level prior to onset and fall apart at home. PANS/PANDAS always starts with some type of infection and a sudden of OCD and concurrent neuropsychiatric symptoms. While some children display clear signs of illness prior to onset, (e.g., Strep infection or Lyme), others patients need only be exposed to a pathogen to be affected.
What Neurocognitive and Neuropsychiatric Conditions Come With PANS/PANDAS?
In the real world, what does PANS and PANDAS look like? Some children have OCD. Others have severe separation anxiety. Still others have tics and food restriction. Moreover, some have a combination of behaviors. PANS and PANDAS displays itself with a dramatic, sudden onset. Parents will report to me that there, “Was a change overnight” or “It was like he was possessed.” Often the symptom is an acute behavioral change with a very dramatic onset. Parents will recall the moment or the incident that began it all. The stories are all different, but they share an intense incident with a complete shift in behavior. From an incidence of OCD after a splinter to complete food restriction out of nowhere, these are the behaviors that occur and throw a family into chaos.
Is There a PANS/PANDAS Link to Autism?
Research supports that there is a link between Lyme Disease and Autism, so there is a natural conclusion that children with Autism are more susceptible to infectious disease in general. While we don’t conclusively know, estimates are as high as 30% that individuals with Autism also have PANS/PANDAS. It is very hard to detect PANS/PANDAS in children with Autism due to the high rate of behavioral issues already related to the disorder. Clinically, many individuals with a dual diagnosis of PANS and Autism come to our office, so I see the connection quite frequently. Only through research will we learn more about the link between infectious disease and Autism.
A clinical diagnosis of PANS/PANDAS syndrome in children is based on a combination of personal history, clinical examination, and laboratory tests. Prior to a PANS/PANDAS diagnosis, other syndromes must be excluded. These include as general OCD, tic disorders, Sydenham chorea, and general anxiety.
Lab tests can show if there has been a preceding infection, but they must be used in conjunction with a thorough clinical history. A patient need not present with an illness for a PANS/PANDAS diagnosis. Some patients only need to be exposed to a pathogen to be affected. Currently, no conclusive diagnostic blood or neurological tests can definitively diagnose PANS/PANDAS.
Most doctors only see the psychiatric PANS/PANDAS symptoms in children and don’t understand the medical source of the often extreme behaviors. Since people are seen as having a mental health condition and not a physical medical condition, they do not receive proper treatment. Understanding that there is an infectious source to the neuropsychiatric and neurocognitive symptoms is critical to helping patients get the necessary treatment. This makes the controversy around the disease is even greater than the controversy surrounding PANS/PANDAS.
Obtaining a PANS/PANS diagnosis can be challenging because symptoms can mimic other diagnoses. Another problem in diagnosis is that when individuals present with psychiatric issues, most practitioners aren’t trained to think about potential medical sources. All too often, children with PANS and PANDAS are misdiagnosed as having a psychiatric illness and may be treated solely with psychotropic drugs to manage their symptoms. When they don’t resolve with the first medication trial, then another medication is tried, and so on. Sometimes relief is found, but often, it is not.
Another part of the problem with diagnosis is that some symptoms aren’t always observable and can build before others can identify it. For example, OCD can be hard to identify due to the intrinsic nature of the disease. One child that came to our office had to walk around the playground three times before he joined into play; otherwise, he tantrumed for a very long time if he was interrupted in any way. A child can experience OCD for some time before a parent or practitioner starts to put together that OCD might be part of their behaviors or anxiety.
Food restriction can also be hard to see as a clinical issue with younger children, as parents are often told, “It is normal to refuse food”. One family recalled that their pediatrician said it was, “okay for their three year old to completely stop eating and that they would eat when they were hungry”. While that may be true for some children, for this child that just wasn’t the case.
While we don’t have the exact treatment that cures PANS/PANDAS, common treatments antibiotics, IVIG, and Plasmapheresis. Long-term antibiotic and IVIG therapy are frequently used to restore health and reduce psychiatric symptoms. Research shows that short courses of antibiotics aren’t effective but is inconclusive about the exact amount needed for PANS/PANDAS and Tick-Borne Disease treatment. Moreover, this early treatment is critical in preventing physical, neurocognitive and neuropsychiatric issues. Some physicians are adamant that long-term treatments that use therapies such as antibiotics and IVIG are ineffective, literate physicians and patients would differ.
IVIG is a therapy can help people with weakened immune systems or other diseases fight off infections. IVIG gives you antibodies that your body is not making on its own so you can fight infections. It is an intravenous blood product (the immunoglobulin element of donors blood) that is given to children and adults typically in spaced doses over a long period of time who have certain immune deficiencies.
Plasmapheresis is a process by which the harmful auto-antibodies are removed from the blood system itself. It is a procedure that “cleans the blood”. It is a procedure in which whole blood is taken from a person and separated into plasma and blood cells; the plasma is removed and replaced with another solution, such as saline solution, albumin, or specially prepared donor plasma; and the reconstituted solution is then returned to the patient. Symptoms often remediate quickly and the hope that the autoimmune system will not recreate the negative antibodies.
What are Some Non-invasive PANS/PANDAS Treatments?
Since there is no definitive treatment that cures PANS/PANDAS and many children are treatment resistant, families have turned to integrative treatments to restore wellness. With infectious disease, when you hit the wall and have exhausted all other traditional medical options, patients turn to integrative medicine. Luckily, many find relief and for others, the road is a long path to healing.
Common treatments include:
If your child has a sudden onset of OCD, tics, or food restriction, you need to consider PANS and PANDAS. A sudden onset of psychiatric issues isn’t normal and medical issues need to be considered. Ask your child’s physician to run a rapid strep test and a blood culture. If they are positive, most experts agree to go on antibiotics.
In addition, if your child has been exposed to infections like the flu, mono, walking pneumonia, and so on, further lab work is indicated. Literate physicians often run a panel of blood work called the Cunningham panel that gives more information. ASPIRE and Epidemic Answers offers excellent parent resources that explain what the disease is and how to test for it.
The absolute ideal thing to do is to seek out an PANS/PANDAS expert but this isn’t easy as experts are hard to find. Lastly, always follow your parent gut and keep searching until you find the root cause.
To learn more about PANS/PANDAS, check out my book “Brain Under Attack”.
To make an appointment for a consultation if you or someone you love has been experiencing PANS/PANDAS symptoms, call 203.438.4848 or email firstname.lastname@example.org.
Dr. Roseann is a mental health trailblazer, founder of The Global Institute of Children’s Mental Health and Dr. Roseann & Associates, who is, “Changing the way we view and treat children’s mental health”. FORBES magazine called her, “A thought leader in children’s mental health”. Her work has helped thousands reverse the most challenging conditions, such as ADHD, anxiety, mood, autism, learning disability, Lyme, and PANS/PANDAS using PROVEN holistic therapies such as neurofeedback, biofeedback, and psychotherapy. She is the author of the first ever book on teletherapy activities for child and adolescent therapists, “Teletherapy Toolkit™” and It’s Gonna be OK!™ book and The Get Unstuck Program™, which are resources for parents to reverse their child’s symptoms. She is often featured on dozens of media outlets: Fox, CBS, NBC, FORBES, PARENTS, and New York Times.
*The effectiveness of diagnosis and treatment vary by patient and condition. Dr. Roseann Capanna-Hodge & Associates does not guarantee certain results.
©Roseann-Capanna-Hodge, LLC 2020