PANS/PANDAS/BGE

PANS/PANDAS/BGE are neuroimmune illnesses that are near and dear to my heart because we have seen firsthand the devastating effects they can have on children and their families. I became interested in these conditions years ago after learning that children exposed to toxic mold in water-damaged buildings can go on to develop brain inflammation, PANS and other neuroimmune conditions. 

Many fail to realize that the toxins inside water-damaged buildings can work synergistically and cause severe damage to inhabitants, especially children.

I’ve said this for over a decade, and I’ll keep saying it until I die. If you are feeling sick or your child is experiencing strange and debilitating symptoms, and there seems to be no concrete explanation, always rule out your environment because it could be the culprit. 

None of the Doctors I saw in the earlier years of my health decline asked about my environment or even considered it could be the cause of my worsening symptoms. We need to do better for ourselves and for our children.

I never knew that prolonged exposure to toxic mold could injure my health. Before working in a sick building, I was in great health, but that all changed quickly.

Always pay attention if your children start to display new symptoms out of nowhere. Symptoms of a mold-injured brain or a brain affected by a Strep infection can start out and be as simple as feeling tired and irritable. They can also include feeling fatigued, dizzy, foggy thinking, memory loss, learning regression, rage episodes, depression, frequent urination, constant respiratory infections, sleep issues, food restriction, rashes, vision loss, headaches, sudden OCD, new or sudden tics and more. If you suspect toxic mold as a culprit, pay attention if these symptoms occur or get worse at home, school, or work. It is imperative to always rule out your environment. If you suspect that your child has symptoms of PANDAS which is brought on by a Strep infection have their pediatrician culture swabs of the nose, and throat, and if need be swab the perianal area. Although rapid Strep tests are a valuable tool, they can sometimes give false negatives, so always opt for a culture to be done. 

And please understand that you cannot use discipline or consequences to stop a child from experiencing symptoms related to a toxin-induced injury. The same is true for young adults.

An injured brain can show up as involuntary movements, full body shaking, a drop in IQ, learning regression, twitching, vocal tics, depression, changes in mood, reduced attention span, and even suicidal thoughts. Punishing a child or trying to discipline them because of their symptoms is NOT the solution.

You have to avoid/remove triggers and gently support the brain and the rest of the body so that healing can take place.

If you’d like to hear a little about my story and about how dangerous it is to live or work in a moldy building, check out this podcast I did and be sure to share it with others so that we can raise awareness and help people who may be suffering without knowing that it’s their environment making them sick. 💛 To read about how mold and mycotoxins can affect the body, click here. 

Below I’ve listed a few resources and links that may be helpful to you if you are caring for someone with one of these illnesses. Also, be sure to follow me on Instagram, where I also share about PANS and Mold Illness.

For a list of PANS/PANDAS posts shared on this site please click here.

What is PANS/PANDAS?

They are a type of Autoimmune Encephalitis (AE) that may also be referred to as BGE (Basal Ganglia Encephalitis).

PANS & PANDAS are two similar conditions related to neuropsychiatric changes in children due to toxic and/or infectious triggers. PANS stands for Pediatric Acute Neuropsychiatric Syndrome. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

“PANS and PANDAS occur when antibodies, produced by an individual’s own immune system in response to an infection or insult, mistakenly attack healthy tissue in the brain. In PANS and PANDAS, autoantibodies target healthy proteins or receptors in the brain, principally in the basal ganglia, a region of the brain responsible for motor movements, learning, cognition, and emotion.

These autoimmune antibodies bind to or block certain biological components in the basal ganglia, resulting in brain inflammation (encephalitis) and disruption of normal neuronal functioning. This, in turn, can manifest in the onset of psychiatric and/or neurologic symptoms.” Source

The big difference between PANS and PANDAS is what triggers it. With PANDAS, we’ve known since the 1990s that it’s often triggered by a specific type of infection called Group A Streptococcus (GAS), which is the same bacteria that causes strep throat. On the other hand, PANS, which is a newer term coined in 2012, covers cases that look a lot like PANDAS but don’t seem to be caused by strep. Instead, they can be triggered by other infections like the Epstein-Barr virus, Mycoplasma pneumoniae, or even chicken pox and the flu. Sometimes, it’s not even an infection causing it but exposure to toxic mold, chemicals, or heavy metals in the environment. A traumatic brain injury sustained after an accident or a concussion may also trigger PANS.

To summarize, PANDAS is triggered by strep infections, while PANS can be caused by a variety of other infections, injury or environmental factors.

How is it Diagnosed?

PANS and PANDAS are diagnosed clinically,(clinical diagnosis). What does that mean?
A clinical diagnosis is the identification of a medical condition by a medical practitioner based on observations of the patient’s symptoms, medical history, and physical examination. It involves analyzing the information gathered during the patient’s evaluation to determine the most likely cause of their symptoms. While additional tests or procedures may be ordered to support the diagnosis, the clinical diagnosis primarily relies on the expertise and judgment of the healthcare provider to interpret the available information and reach a conclusion about the patient’s condition.
Because PANS and PANDAS are diagnosed clinically, children are often misdiagnosed or ignored if the practitioner is not knowledgeable on PANS/PANDAS.

Online Resources & Information for Parents

Use Caution With Dopaminergic Supplements in PANS/PANDAS

Autoimmune Encephalitis Can be Misdiagnosed as Bipolar Disorder and/or Schizophrenia

PANS/PANDAS Thoughts

Tics, tremors, shaking, jerking and twitching can be a sign that something is affecting or injuring the brain.

Mold as a trigger for PANS – One Families Story

The Intersection of Mental Health and the Immune System

ASPIRE: The Alliance to Solve PANS and Immune-Related Encephalopathies

Dr. Jaban Moore

JBC PANS &PANDAS Foundation

Healthy Kids, Happy Kids

New England Pans/Pandas Association

Northwest PANDAS/PANS Network

P.A.N.D.A.S. Network

Pandas Physicians Network – PPN

The Foundation for Children with Neuroimmune Disorders

PANDAS and PANS in School Settings by Patricia Rice Doran

A Heart For All Students 

PANDAS & The Gut article 

PDF Download – Provider Resource Guide

PDF Download – Educator Resource Guide

Mapping PANS/PANDAS with Dr. Jill Crista

Videos/Movies

My Child Is Not Crazy Documentary (Language warning). Watch for free here.

Brain on Fire – Movie Based on True Story

Dr. Swedo PANDAS/PANS Standards of Care Summit

PANDAS and PANS with Dr. Jill Crista, ND

PANS and PANDAS with Dr. Anju Usman Singh, MD – “In this episode, you will learn about PANS and PANDAS and approaches for supporting children impacted by these conditions.”

Paul Ryan, President PACE Foundation, 2023 Presentation to the Arkansas Joint Health Committee (beginning at minute mark 5)

Dr. Michael Daines: 2023 Presentation the Swedish Riksdag (Parliament)

Books for Parents:

A Light in the Dark for PANDAS & PANS by Dr. Jill Crista 
Childhood Interrupted: The Complete Guide to PANDAS and PANS by Beth Alison Maloney
Brain Under Attack: A Resource for Parents and Caregivers of Children with PANS, PANDAS and Autoimmune Encephalitis by Beth Lambert, Maria Rickert Hong, Roseann Capanna-Hodge, Jennifer Glustra-Kozek, Lauren Stone
Brain On Fire My Month of Madness by Susannah Cahalan
The Parent’s Survival Guide to PANDAS/PANS: A Handbook to Manage Neuroimmune Disorders in Your Child Without Losing Your Mind

Books for Kids:

What To Do When Your Brain Gets Stuck by Dawn Huebner, PhD
In a Pickle Over PANDAS by Melanie S. Weiss
What To Do When You Worry Too Much by Dawn Huebner, PhD

Studies/Articles of Interest

Mold inhalation causes innate immune activation, neural, cognitive and emotional dysfunction. 1
Individuals living or working in moldy buildings complain of a variety of health problems including pain, fatigue, increased anxiety, depression, and cognitive deficits. The ability of mold to cause such symptoms is controversial since no published research has examined the effects of controlled mold exposure on brain function or proposed a plausible mechanism of action. Patient symptoms following mold exposure are indistinguishable from those caused by innate immune activation following bacterial or viral exposure.  Mold exposure is clearly a problem. Floods, building and plumbing leaks result in widespread mold contamination. Our data document for the first time that exposure to known quantities of both toxic and nontoxic mold spores activated a central neural immune response with concomitant cognitive and emotional dysfunction. In addition, we identified a mechanism, innate immune activation, which aptly explains how mold exposure may cause such a diverse array of problems. The extent of the contribution of mold exposure to neural and behavioral dysfunction in humans under ecologically-relevant conditions remains to be determined. However, mold exposure, both toxic and nontoxic, must be considered another factor, like pesticide exposure or smoking, that can add to an individual’s burden of inflammation with possible serious consequences for health and behavior.

Microglial Location, Morphology, and Cognitive Performance in Microglial Location, Morphology, and Cognitive Performance in Mold-Exposed Mice Mold-Exposed Mice. 2

Mold inhalation, brain inflammation, and behavioral dysfunction. 3
Exposure to mold can cause neurological problems, increased anxiety and depression, and cognitive deficits. 3

Effects of Mycotoxins on Neuropsychiatric Symptoms and Immune Processes. 4
Exposure to molds is most commonly associated with allergies and asthma. However, it is now thought to be associated with many complex health problems, since some molds, especially TrichodermaFusarium and Stachybotrys spp, produce mycotoxins that are absorbed from the skin, airways, and intestinal lining. People exposed to molds and mycotoxins present with symptoms affecting multiple organs, including the lungs, musculoskeletal system, as well as the central and peripheral nervous systems. Furthermore, evidence has recently implicated exposure to mycotoxins in the pathogenesis of autism spectrum disorder. The effects of mycotoxins can be mediated via different pathways that include the secretion of pro-inflammatory cytokines, especially from mast cells.

Neurologic and neuropsychiatric syndrome features of mold and mycotoxin exposure. 5
Human exposure to molds, mycotoxins, and water-damaged buildings can cause neurologic and neuropsychiatric signs and symptoms. Many of these clinical features can partly mimic or be similar to classic neurologic disorders including pain syndromes, movement disorders, delirium, dementia, and disorders of balance and coordination. 

How common infections can spark psychiatric illnesses in children, and why many doctors do not realize it. 6

Clinical Evaluation of Youth with Pediatric Acute Onset Neuropsychiatric Syndrome(PANS): Recommendations from the 2013 PANS Consensus Conference. 7

Folate Receptor Alpha Autoantibodies in the Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) Population. 8

Association between streptococcal infection and obsessive-compulsive disorder, Tourette’s syndrome, and tic disorder. 9

From Throat to Mind: Strep Today, Anxiety Later? The case for strep throat–induced mental illness grows stronger. 10

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Blessings,
CFG