What Is PANS PANDAS?
PANS PANDAS are newer diagnoses that your child’s pediatrician or psychiatrist may not be aware of.
They are disorders that are loosely defined as a sudden onset of acute anxiety and mood variability accompanied by OCD (Obsessive Compulsive Disorder) and/or tics.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. With PANDAS, the onset of symptoms is typically preceded by streptococcal -A infection (“strep throat”). However, in some cases, children may not have presented with a full-blown, acute strep throat infection.
PANDAS is included in the larger umbrella of PANS, Pediatric Acute-onset Neuropsychiatric Syndrome. PANS includes not only PANDAS, but also diagnoses such as Lyme disease, OCD and ODD.
Recent statistics indicate that roughly one in 200 children in the United States is affected with PANS PANDAS. In the United States, 500,000 children are diagnosed with OCD and 138,000 have Tourette Syndrome. In addition, 1.5 million American children are diagnosed with anxiety, phobias, OCD and/or bipolar disorder.
PANS PANDAS Symptoms
Typically, PANS PANDAS are accompanied by an acute onset of extreme behavioral and emotional symptoms, although sometimes there appears to be a slow onset.
Symptoms can include, but are not limited to:
- OCD (Obsessive Compulsive Disorder)
- Excessive anxiety, especially separation anxiety
- ODD (Oppositional Defiant Disorder)
- Tics such as:
- Hair pulling
- Eyelash 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
- Severe food restriction
- Decline in handwriting skills
- Decline in math skills
- Inability to concentrate
- Head banging
- Refusal to go to school
- Increased desire to be left alone
Children diagnosed with PANS PANDAS are typically between one and 13 years of age, with 60% of diagnoses for children between the ages of four and nine.
Please note that there is an overlap of general symptoms between PANS and PANDAS, and that PANS usually results in severely restricted food intake as well as at least two of the symptoms described above. Clinical diagnosis of PANDAS is defined as the presence of significant OCD behavior and/or tics in addition to the above symptoms.
In addition, your child may have a combination of both PANS and PANDAS.
Anti-Dopamine Receptor Antibodies
In PANDAS, the cross-reactive antibodies created in response to strep attack the dopamine receptors in the basal ganglia of the brain because of a blood-brain barrier breach.
However, these antibodies can be also be created in response to microbes other than Streptococcus, as well as to environmental toxins, which is why the umbrella term of PANS more accurately describes these disorders.
The basal ganglia are a group of nuclei located at the base of the brain and are linked to the thalamus.
Basal ganglia have traditionally been associated with movement disorders, such as Huntington’s and Parkinson’s disease.
In addition to voluntary movement control, the basal ganglia are also associated with procedural learning, eye movements, cognitive function and emotional function.
The basal ganglia are also the site of two dopamine receptors.
Dopamine is a neurotransmitter associated with attention, movement and the pleasure/reward centers of the brain.
- The D1 receptor is a direct pathway in the basal ganglia that facilitates movement.
- The D2 receptor is an indirect pathway that inhibits movement.
When the cross-reactive antibodies associated with strep or other antigens attack the dopamine receptors in the basal ganglia of the brain, it causes a fluctuation in dopamine, which results in OCD, tics and other neuropsychiatric symptoms.
Some doctors also refer to this as autoimmune-mediated basal ganglia dysfunction.
Blood-Brain Barrier Breaches
Pathogens can easily make their way inside your child’s brain if there has been a blood-brain barrier breach.
Traumatic Brain Injury
Concussion-related cause and relapse of PANS PANDAS (including Lyme disease) is very common because the blunt-force trauma can breach the blood-brain barrier.
Excessive EMF exposure has been documented to cause a blood-brain barrier breach.
It is important to lower exposure to EMFs from cell phones, ultrasounds, wireless phones, baby monitors, smart meters, large electrical devices and WiFi systems as much as possible.
Exposure to Antibiotics
Antibiotics exposure cause gut-microbe disruptions, which can cause immune dysregulation.
Any kind of stressful event, whether physical, emotional or biomedical, can cause a relapse, which is why it is important to teach your child stress-relieving skills (see below).
Many healthcare practitioners specializing in PANS PANDAS think that blood-brain barrier breaches may also be due to exposure to environmental toxins.
Autism, ADD/ADHD and SPD Comorbidities
Knowledgeable practitioners have found that roughly 30-50% of children with autism, ADD/ADHD and Sensory Processing Disorder (SPD) also have PANS PANDAS.
In addition, it is very common for younger siblings of children diagnosed with autism, ADD/ADHD or Sensory Processing Disorder to be diagnosed themselves with PANS and PANDAS.
If this is the case, consider that your older child may have PANS PANDAS as well.
In many cases, these children have both a PANDAS diagnosis as well as that of Lyme disease.
Another way to think of PANS PANDAS, as well as any neurodevelopmental disorder such as autism, ADD/ADHD, Sensory Processing Disorder and even learning disabilities, is that these disorders may fall under the larger umbrella of autoimmune encephalitis (AE).
Autoimmune encephalitis is a disorder in which the immune system attacks the brain, impairing function.
Encephalitis is inflammation and swelling of the brain, often due to infection, which in many of these cases causes an autoimmune attack on the microglia cells of the brain.
A child with this type of damage may typically never have or may lose motor skills and/or the ability to speak, similar to an adult who has had a stroke.
Encephalitis is a common symptom of this type of damage, and it often shows up as an increase in the child’s head-circumference percentile, especially in the first year of life.
The prestigious science journal Nature pointed this out by stating that “brain volume overgrowth was linked to the emergence and severity of autistic social deficits.”
Anti-NDMA Receptor Encephalitis
The N-methyl-D-aspartate receptor (also known as the NMDA receptor), is a glutamate receptor found in nerve cells.
It is activated when the amino acids glutamate and glycine bind to it.
NMDA receptors have been implicated by a number of studies to be strongly involved with excitotoxicity, the process by which nerve cells are damaged or killed by excessive stimulation by neurotransmitters such as glutamate.
Excitoxicity can cause encephalopathy and seizures.
Glutamate and its analogs are found in processed foods not only as MSG (monosodium glutamate), but also in chemical food additives such as:
- Hydrolyzed vegetable protein
- Soy protein isolate
- Yeast extract
- Barley malt
- Natural flavoring
- Artificial flavoring
- Soy sauce
Even natural foods such as tomatoes, bone broth and seaweed may naturally have high levels of glutamate.
Strep also increases glutamate in the brain.
What Your Doctor May Tell You About PANS PANDAS
Most pediatricians and psychiatrists may not be aware of PANS PANDAS.
These diagnoses are clinical diagnoses and are diagnoses of exclusion.
If you suspect that your child has PANS PANDAS, you might be able to work with your child’s doctor to have them perform tests that could lead them to a clinical diagnosis.
If not, you may need to find a practitioner that specializes in PANS PANDAS, many of whom are listed in our practitioner directory.
Testing for PANS PANDAS
To begin with, your child’s doctor may choose to have blood tests performed on your child.
The Cunningham Panel is a series of tests that was developed by Madeleine Cunningham, PhD to help physicians diagnose and treat infection-induced neuropsychiatric disorders.
These tests measure circulating levels of auto-antibodies directed against specific neuronal antigens, including:
- Dopamine D1 receptor (DRD1)
- Dopamine D2L receptor (DRD2L)
- Lysoganglioside GM1
- CaM kinase
If any of these antibodies is elevated, this is an indication of autoimmunity. Also, please note that the Cunningham panel only establishes autoimmunity, not what is causing the autoimmunity. Additional testing is necessary to determine the cause of autoimmunity.
PANDAS Specific Testing
- Serum ASO titer (Anti-Streptolysin O): This is produced between one week to one month after the onset of an infection.
- Serum ASDB titer (Anti-Streptococcal DNase B): This peaks four to six weeks after infection and remains elevated longer than ASO.
PANS Specific Testing
Because PANS is the broader umbrella under which PANDAS falls, additional testing may need to be done to check for:
- Lyme disease
- Specific viruses, especially herpetic viruses such as Epstein-Barr virus and herpes simplex viruses
- Pathogenic bacterial infection, such as Staphylococcus aureus
- Mycoplasma pneumoniae infection
- Influenza infection
- Heavy metals and other toxins
Please remember that is quite possible, and often common, for a child to have both PANS and PANDAS, so it is a good idea to test for all of the above triggers before deciding on a course of action.
Conventional Lab Tests Are Not Always Reliable
However, titers are NOT always indicative of an infection.
Titers are often only moderately elevated, or not elevated at all in some children with PANS PANDAS.
According to one study, only 54% of children with strep throat showed an elevated ASO titer and only 45% showed an increase in anti-DNase B.
In addition, throat cultures frequently result in false negatives because of the technique used in obtaining the specimen, mishandling of the specimen and the fact that the strep bacteria may be harbored in other parts of the body than the throat.
Because labs are not always reliable, the diagnosis of PANS PANDAS is a clinical diagnosis.
This means that your healthcare provider will base his or her diagnosis on your child’s history and symptoms.
Typical Western Medicine Treatment of PANS PANDAS
Your child’s doctor will typically address your child’s behavioral and emotional symptoms with psychotropic pharmaceuticals such as anti-depressants.
However, anti-depressants typically have a “black box” warning against these medications by children because they can increase the risk of more aggressive behavior and suicide ideation.
More forward-thinking Western medical doctors now understand that PANS and PANDAS are typically caused by a pathogenic infection and/or acute environmental toxic assault.
To that end, typical treatments include:
Although a 14-day course of beta lactam antibiotics is a typical prescription, antibiotics must often be given over several weeks or months to see improvement.
Many children require multiple rounds of antibiotics, and some stay on antibiotics prophylactically for years.
However, recent research has shown that antibiotics severely alter, often permanently, the microbiome in the gut, which is where most of the body’s immune system is.
In essence, giving antibiotics may “win the battle, but lose the war” because they can alter the body’s immune function and often cause an overgrowth of fungus, such as from Candida albicans.
In addition, antibiotics only work against bacterial infection, so they won’t help in the case of viral, parastic or fungal infection as well as environmental toxic assault.
Steroids and NSAIDs
Both steroids and NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) have been documented to reduce symptoms in children with PANS PANDAS, which is a clue that inflammation is part of what’s behind the child’ symptoms.
However, long-term use of either of these kinds of pharmaceuticals is hard on the body and can cause strain on the liver’s detoxification process as well as lead to nutritional deficiencies, thereby potentially leading to additional symptoms further on down the road.
In addition, steroids can disrupt the microbiome in the gut, which can lead to more symptoms later on.
Intravenous Immunoglobulin (IVIG) treatment is used when a child does not respond well to antibiotics, steroids or NSAIDS because the immune system is severely compromised.
IVIG floods the body with donor antibodies, which helps to overwhelm pre-existing auto-antibodies. IVIG also helps to up-regulate regulatory T cells, thereby improving immune function.
Some children do respond very well to IVIG for relief of their symptoms. IVIG is very expensive, however, and many insurance carriers do not cover it. In addition, one round of treatment may not be enough, especially if the child relapses.
Knowledgeable doctors are saying that IVIG is not addressing the cause, and so the latest Western medicine approach is to treat a child with PANS PANDAS with the biologic IV infusion of Rituxan, which carries its own risks. Rituxan lowers the number of B cells, which is what is was designed to do as an immunosuppressant.
The potential of untested-for contamination in donor immunoglobulins exists as well.
In a plasma apheresis treatment, the child’s blood is collected by a machine, which separates the plasma, red cells and platelets and returns the red cells and/or platelets back to the donor.
Some children do respond well to this treatment, but it is expensive and invasive, so Western medical doctors typically reserve it for treatment of children who are severely affected by PANS PANDAS.
Another Way to Think About PANS PANDAS
Although both PANS and PANDAS are often described in terms of an “acute onset” and/or specific microbial infections, neither of these conditions can be distilled down to a specific causative factor.
Rather, there are a variety of factors at play:
- Environmental exposures to toxins
- Infectious agents
- Total load
There is no single cause or agent; rather, there are multiple contributing factors that work together in precipitating the disease process.
It is the combination of all of these factors that create a total load syndrome that informs the point of departure and the progression of the disorder.
According to this model, there is never just one causal factor.
There may be the proverbial “straw that broke the camel’s back”, that is, the singular incident after which symptoms began to emerge.
However, the foundation is a complex amalgam of multi-factorial and multi-generational factors.
Bio-Individuality and Total Load
Every person has a unique “tipping point” as well as his or her own unique story.
In some children, infection plays a larger role than environmental exposure to toxins or genes.
In others, genetic predisposition is a larger contributing factor.
Total Load Origins
Scientific research has proven again and again that trans-generational toxins and exposures are passed down from mother to child.
Toxins are passed from a mother to a child in utero.
In addition, the mother’s first-born child is generally the most affected and receives the bulk of the mother’s toxic load, including chemicals, heavy metals and infections such as Lyme disease.
The Role of the Immune System
The immune system is a collection of cells, tissues and organs that work together to protect the body from foreign substances called “antigens”.
Antigens can be both microbes and toxins, such as:
- Heavy metals
- Endocrine disruptors
Lymphocytes are small, white blood cells that do the work of the immune system.
There are two main types of lymphocytes:
B lymphocytes (“B cells”)
B cells mature in the bone and are the equivalent of pedestrians jumping up and down outside a burning building yelling, “FIRE! FIRE!”.
B cells don’t really do anything other than to “draw attention to the burning building”.
T lymphocytes (“T cells”)
T cells mature in the thymus and are the equivalent of the firefighters who organize and put the fire out.
In immune disorders such as PANS and PANDAS, there is an over-proliferation of B cells (the ones yelling “FIRE! FIRE!) and not enough T cells (the ones that stop the screaming or organize how to put out the fire).
In a healthy immune system, lymphocytes are able to recognize the difference between “self” and “non-self” cells.
In autoimmune disorders such as PANS PANDAS, the immune system attacks and destroys its own tissues.
When the immune system is overloaded fending off toxins in the form of daily exposures to chemicals, pesticides and heavy metals, there is little reserve left to ward off infectious agents, which should be the main focus of a healthy immune system.
As a result, the immune response becomes disjointed and overwhelmed.
In a healthy individual, immune cells conjugate at the site of an infection.
Cytokines are immune cells secreted by cells to regulate immune response; they include:
- Growth factors
When the body is overwhelmed by toxicity, however, cytokines are activated in multiple parts of the body, which leads to systemic inflammation.
High cytokine activity and high inflammation are a hallmark of PANS PANDAS, as well as autoimmune disorders, autism, ADD/ADHD and Sensory Processing Disorder.
The Role of Genetics
Defects in certain genes, such as the MTHFR gene, lead to decreased T cell response and production (firefighter cells).
In addition, an MTHFR mutation can lead to reduced or impaired B cell response (bystander cells yelling “FIRE! FIRE!”).
The human gut microbiome is the name given to the colonies of microbes that live in our digestive system.
These gut microbes are vitally important for communication with the brain and the immune system.
It is believed that 70% of our immune system is located in the digestive tract.
Canadian researcher Derrick McFabe PhD has demonstrated how changes in the gut bacteria affect brain functioning and behaviors, thus proving the theory of the gut/brain axis.
He has shown how specific bad gut bacteria can alter the gut/brain connection as demonstrated in children with autism.
Also in our brain are chemical messengers that transmit signals from one neuron to another telling the brain and body what to do.
These messengers are called neurotransmitters, and they are made in our gastrointestinal tract, which allows for communication with the brain.
If the gastrointestinal tract develops a common condition called “leaky gut syndrome”, then this means there has been too much foreign matter that has permeated the gut lining.
As a result, many bad pathogens, bacteria, viruses, yeast, fungus and parasites can populate the gastrointestinal tract and disrupt communication with the neurotransmitters in the brain causing the neurotransmitters to misfire.
This process begins the development of an autoimmune disorder, and, if this happens, your child may experience many problems such as:
- Developmental delays
- Muscle tone issues
- Mood swings
- Sensory overload
- Sympathetic dominance of the nervous system (fight or flight)
- High-anxiety issues
- Inappropriate behaviors
- Self-injurious behaviors
- Inability to cope
- Inability to focus
- Inability to concentrate
Therefore, no matter what autoimmune disorder your child may have, begin with healing the microbiome.
A PANS PANDAS Checklist to Start
Make dietary changes:
- Eat whole foods
- Buy organic foods
- Remove all GMO foods
- Remove all fast and processed foods
- Remove all foods with:
- Artificial colors
- Artificial ingredients
- With an elimination diet, remove potentially inflammatory foods such as:
- Strictly limit:
- Refined salt
- Refined carbohydrates
- Consider implementing a low glutamate diet and/or the Feingold diet
Include plenty of good quality fats, such as:
- Coconut oil
- Olive oil
- Wild salmon
- Organic chicken
- Organic turkey
- Grass-fed ghee
- Pasture-raised eggs
- Grass-fed beef
- Essential fatty acids from:
- Cod liver oil
- Hemp seeds
- Flax seeds
- Evening primrose oil
- Borage oil
- Walnut oil
Remove vegetable oils such as:
Include plenty of high-quality proteins with every meal, such as:
- Pasture-raised eggs and chicken
- Grass-fed beef
- Wild-caught fish
Heal the gut with special diets such as:
- GAPS (Gut And Psychology Syndrome) diet
- Specific Carbohydrate Diet
- Paleo diet
- GF/CF (gluten-free/casein-free) diet
- Body Ecology Diet
- The ketogenic diet
Learn more about healing diets and foods.
Use digestive aids with your practitioner’s guidance:
- Betaine hydrochloric acid
- Digestive enzymes with DPP-IV for gluten and casein intolerances
- Proteolytic enzymes
Clean up your environment:
Have you identified and removed possible environmental triggers, such as mold, dust, pet dander, and electromagnetic fields (EMFs)?
Have you identified and removed possible toxic exposures in the home from purchased products, such as detergents, soaps, lotions, and other cleaning and personal care products?
- Remove animals (both live and stuffed!)
- Remove carpets
- Use non-toxic cleaners
- Use non-toxic building materials
- Green your home
Avoid exposing your child to chlorine, fluoride, and bromine because all three are in the same family as iodine and can displace iodine in the thyroid gland.
Ask your pediatrician to run some laboratory tests for:
- The Cunningham Panel for circulating levels of auto-antibodies directed against dopamine and other potential antigens
- Possible food sensitivities and allergies
- Enzyme-Linked Immunosorbent Assay (ELISA) IgG, IgA, IgE and IgM
- Nutritional deficiencies in vitamins and minerals. The NutrEval by Genova Diagnostics Labs covers the following areas:
- Cellular energy
- Mitochondrial metabolism
- Neurotransmitter metabolism
- Vitamin deficiencies
- Toxin exposure
- Detoxification need
- Bacterial and yeast overgrowth
- Gluten and casein sensitivities
- Organic acids: The organic acid test by Great Plains Laboratory for:
- Yeast overgrowth (Candida)
- Other microbial infections
- Comprehensive Stool Analysis by Genova Diagnostic Labs to identify:
- Altered gastrointestinal function
- Bacterial/fungal overgrowth
- Chronic dysbiosis
- Neurotransmitters: Neurorelief (Neurosciences Laboratory) is a specialty lab that tests neurotransmitters to determine chemical imbalances in the brain
Use homeopathy specific for:
- Homeopathic drainage: In order to detoxify efficiently, the liver, kidneys and intestines must be open and draining.
- Series therapy for:
- Epstein-Barr virus
- Other viruses or bacteria as determined by your practitioner
Add fermented foods and probiotics daily:
These will keep the gastrointestinal system and microbiome healthy and strong which in turn will keep the immune system strong.
- Eat kefir yogurts
- Eat fermented vegetables
- Eat umeboshi plums (very alkalizing)
- Eat miso soup, if soy is tolerated
Some good probiotics are:
- Gut Pro
- Dr. Ohirra’s Live Cultured Probiotics
- Garden of Life
- Klaire Labs
Use herbs, essential oils and natural supplements with your practitioner’s guidance:
- GABA, especially PharmaGABA
- Lithium orotate
- Vitamin D
- Vitamin K
- B vitamins, especially niacin if strep is concerned
- Vitamin C, especially liposomal vitamin C
- Cod liver oil
- Trace minerals
- Methylcobalamin B12
- Folinic acid or 5MTHF if your child has methylation issues
- Colostrum and/or transfer factor for those who do not have severe allergic reactions to dairy
- Mushroom blends such as Core Mycelia
- Turmeric or curcumin
- Antimicrobial herbs and supplements
- Olive leaf
- Oil of oregano
- Grapefruit seed extract
- Samento (cat’s claw)
- Arentyn or Smart Silver colloidal silver
- Apple cider vinegar for gargling
- Manuka honey
- Thieves’ oil
- N-acetylcysteine (NAC): helps with detoxification process and healing of the gastrointestinal tract
- MSM transdermal cream
- Epsom salts bath
- Low-dose naltrexone
Help your child detoxify:
- Ionic foot baths can help detox unwanted pathogens and are easy to do with children
- Infared saunas can detox heavy metals through the skin by sweating.
Lower stress levels:
Viruses, bacteria and other pathogens become more active when the body is in a state of stress.
By teaching your child ways to self-regulate with practices such as prayer, reiki, meditation, yoga, qi gong, tai chi and the Emotional Freedom Technique (tapping), they can become good advocates for themselves and become active participants in the recovery process.
See a neurofeedback practitioner:
Neurofeedback is approved as a level-one intervention by the American Academy of Pediatrics for ADD and ADHD, both of which feature anxiety as a component.
Even if your child doesn’t have ADD or ADHD, they may still benefit from neurofeedback because it can help lower anxiety levels.
Find a practitioner that can perform a QEEG (quantitative electroencephalograph) brain map first so you can understand how your child’s brain works.
See a sensory-integration occupational therapist:
These OTs address a variety of sensory issues with a child using hands-on equipment. This type of therapy calms down the nervous system to help integrate the senses and retained reflexes.
See a chiropractor:
A chiropractor can perform spinal cord adjustments, which can improve communication in the nervous system.
See a craniosacral practitioner:
Craniosacral therapy can reestablish central nervous system functioning.
See a homeopath or naturopath:
These practitioners can diagnose and treat underlying pathogenic infections while supporting the immune system’s function.
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