PANS/PANDAS

PANS/PANDAS

PANS – Pediatric Acute-onset Neuropsychiatric Syndrome
PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
Both of these conditions are an autoimmune encephalopathies that attack the basal ganglia in the brain and result in extreme illness.

These conditions are related to one another – PANDAS is the name given when the symptoms have a documented association with group A Streptococcus infections while PANS is a more general term and describes symptoms that can be the result of one or more infectious organisms or toxins. They both are the result of a misdirected immune response against specific targets in the brain that are triggered by a bacteria, virus, mold, mycotoxin or some other factor. This autoimmune response negatively affects neurological functioning and triggers an often rapid, acute onset of Obsessive Compulsive Disorder (OCD), anxiety, restricted food intake, tics and other symptoms, which can develop either very quickly following the illness or have a delay of many months after infection. PANS/PANDAS symptoms often relapse and remit; with flares symptoms can worsen and new symptoms present, often following an exposure to some type of infection or even being around someone else who is ill. I have seen patents flare following a head injury or an immunization – anything that worsens inflammation in the body or brain can trigger a flare!

People are often misdiagnosed with having a psychiatric illness and prescribed only psychotropic medications or given psychotherapy with limited to no benefit. Although the current diagnosis would indicate people affected with PANS/PANDAS are children, adults have also been given this diagnosis, sometimes due to persistent symptoms following developing the condition as a child and other times due to developing the symptoms in adulthood.

Some people are more predisposed to getting PANS; this includes genetic factors scubas a sibling or parent with similar symptoms, a family history of autoimmune diseases, family history of rheumatic fever, scarlet fever, or Sydenham’s chorea, or a family history of OCD, severe anxiety or tics.»

PANS/PANDAS is mainly a clinical diagnosis based on history and physical examination. Testing can be helpful in clarifying whether the child likely has been affected by any of the known infectious agents, such as Group A Streptococcus, Borrelia (Lyme disease), Varicella, one of a number of Herpes viruses, Mycoplasma pneumonia, influenza, or other viruses as well as mold and mycotoxins. Other tests can look at the person’s immune functioning, which may be helpful in getting insurance coverage for IVIG should that be needed, as well as looking for antibodies against specific brain antigens and indicate an autoimmune encephalopathy.

PANS Criteria:

*Sudden and acute (although sometime there can be a sub-acute) onset of OCD or severely restricted food intake
*Concurrent severe and abrupt onset of symptoms from at least 2 of the following categories:

  1. Anxiety, Separation Anxiety
  2. Emotional Lability, Depression
  3. Aggression (and rages), Irritability, Oppositional Behavior
  4. Behavioral/Developmental Regression
  5. Deterioration of learning abilities related to ADHD symptoms
  6. Sensory and Motor Abnormalities
  7. Somatic Signs: sleep disturbance, enuresis, urinary frequency

*Symptoms not better explained by a know medical or neurological disorder
*There is no age requirement; typically the symptoms start during grade school but not necessarily
Children with PANS can have motor and phonic tics (whooping, wringing hands, etc.), can have episode of extreme anxiety or aggression, can have visual or auditory hallucinations and can have a decline in handwriting and math skills.

Typical Laboratory testing obtained at Holistic Child Psychiatry for a PANS/PANDAS work-up:

Basic Testing: Complete Blood Count, Complete Metabolic Panel, Thyroid studies, Nutritional studies (vitamins and minerals), Inflammation Markers, Anti-Streptolysin Antibody, Anti-DNase B Strep Antibody, Lyme and other vector-borne illness testing, Mycoplasma pneumonia antibodies, Epstein Barr and other Herpes virus antibodies, Coxsackie virus antibodies

Advanced Testing: Cunningham Panel (autoimmune autoantibody levels for Dopamine D1 and D2 receptors, Lysoganglioside GM1, Tubulin and CAM Kinase II
Organic Acids Testing; Mycotoxin Testing
ANA, Heavy Metals, Immunoglobulins A/E/M and IgG Subclasses

Treatment:

Holistic Child Psychiatry prefers to use a Functional Medicine Model in treating PANS/PANDAS. This means looking for the underlying cause of the person’s symptoms and addressing this rather than just treating the symptoms or using a “band-aid” approach. There are 3 major areas targeted with treatment:

  1. Reduce the Fire (brain inflammation)
  2. Balance the Immune System
  3. Target the triggering cause(s)

Many times other interventions are needed, which are individually tailored to each person’s particular needs.

Reducing the Fire – often reduces symptoms

  • there are many natural anti-inflammatory herbs and supplements that can often be extremely beneficial. These include Curcumin, Resveratrol, Sulphorophane, Green Tea, Glutathione and more.
  • I will often combine one or more of these and if needed will use a short course of an NSAID such as Naproxen if indicated (this must be monitored closely as NSAIDs can result in digestive, circulatory or urinary tract side effects.
  • In more severe cases, oral steroid bursts of 5-15 days (occasionally longer if necessary, but then it can be difficult and slow to wean the person off these medications. Steroids can be extremely helpful, but also have many side effects including depression, hallucinations/psychosis, weight gain, immune system suppression.
  • It is often helpful to support the body’s ability to detoxify itself, both in the brain and through the liver, kidneys and lymph systems or there can be a very negative Herxheimer (“die-off”) reaction when it comes to addressing the infections. Specific binders that “catch” the toxins released as the infections are treated can also reduce negative “Herx” reactions.
  • If the person develops a Mast Cell Activation Syndrome, using antihistamines (either natural ones such as Quercetin, Stinging Nettles, Luteolin or H1 and H2 blockers) can reduce symptoms
  • Anti-Inflammatory Diet, which often is gluten and dairy free, avoids processed and fast/junk foods and is as organic as possible
  • Normalizing sleep and working towards getting at least 8 hours of sleep nightly (important for the brain to clear out the toxins!). Good sleep hygiene is stressed and at times supplements to assist with sleep are used.

Balancing the Immune System – which is dysregulated in PANS

My preference is to use a combination of the following;

  • Low Dose Naltrexone which is a compounded medication that temporarily blocks the body’s endogenous opioid receptors, making the body believe it is not making enough endorphins. More endorphins are then produced, which help with pain reduction, immune system balancing (often used with autoimmune conditions, which is essentially what PANS/PANDAS is), reducing inflammation (it is useful for autism and depression) and can even by helpful in some forms of cancer.
  • Serum Bovine Immunoglobulins to both build up the immune system in the digestive system (where the majority of the immune system resides) as well as help fight infections in the gut and heal the gut.
  • Use of a specific herbal formula that helps calm down the immune system over-reaction.
  • Transfer Factors, which both increase the Natural Killer Cells in the Immune System and lower the TH17 immune cells (responsible for autoimmunity). Specific Transfer Factors also help “program” the immune system to attack specific bacteria and viruses.

IVIG – Intravenous Immunoglobulin is a blood product made from purified antibodies pled from thousands of donors and given through an IV (it is also sometimes given subcutaneously or under the skin as well) to calm inflammation and “reset” the immune system. This treatment can sometimes work quickly and have almost miraculous effects but it does not always work, is extremely expensive (somewhere between $10,000 – $15,000 a treatment) and insurance is generally reluctant to authorize it unless the person has a documented immunodeficiency. Sometimes the first IVIG treatment is helpful but the benefits can wane and further treatments may or may not help – I have worked with families in which there have been as many as 6 IVIG treatments with limited benefit. There are companies that provide intravenous treatments, including IVIG, in the home or the person may also go to an infusion center.

There are potential serious side effects, including:

More common:

  • Cough, cough producing mucus, difficulty breathing, tightness of the chest
  • fever
  • headache, pain or tenderness around the eyes and cheekbones, unusual tiredness or weakness
  • pale skin
  • stuffy or runny nose
  • unusual bleeding or bruising

More serious:

  • Pulmonary: Bronchospasm, pulmonary edema, pulmonary embolism, respiratory failure
  • Cardiac: Blood pressure changes, palpitations, cardiac arrest, blood clots
  • Neurologic: vertigo, migraine, tinnitus, aseptic meningitis, stroke, coma, fainting, Seizures; paresthesias
  • Psychiatric; anxiety, hallucinations, agitation, confusion
  • Other: skin issues, abdominal pain, vomiting and diarrhea, urinary tract symptoms, high fever
  • Rituximab – a biologic agent, this medication is a genetically modified (mouse/human mix) monoclonal antibody against a protein found mainly on the cell wall of B-lymphocytes which triggers cell death when bound to the protein. It causes immunosuppression, and has been used to treat certain blood cancers, autoimmune diseases and has been used off label for certain organ transplants. It is administered via IV. It can have very serious side effects
  • Severe infusion reaction.
  • Cardiac arrest
  • Cytokine release syndrome
  • Tumor lysis syndrome, causing acute renal failure
  • Infections
  • Hepatitis B reactivation
  • Other viral infections
  • Progressive multifocal leukoencephalopathy (PML) caused by JC virus reactivation
  • Immune toxicity, with depletion of B cells in 70% to 80% of lymphoma patients
  • Pulmonary toxicity
  • Bowel obstruction and perforation
  • Plasmapheresis – the most extreme of the treatments, this is a method of extracorporeal blood purification involving the removal of inflammatory mediators and antibodies through removal of blood through an IV, separating the components and returning the red blood cells while having the plasma go through a filtration machine to remove antibodies and then returning it to the person. This may result in a rapid but temporary improvement. This procedure is often reserved for life threatening situations due to serious risks

The adverse side effects observed most frequently during plasma filtration were:

  • fall in arterial blood pressure, heart arrhythmias, sensations of cold with temporarily elevated temperature, and paresthesias. In most cases these symptoms were mild and transient.
  • Severe and life-threatening episodes, i.e. shock, fall in arterial blood pressure requiring pressor amines, persistent arrhythmias and hemolysis, developed in 2.16% of procedures.

It should be noted that the last 2 forms of treatment are NOT offered through Holistic Child Psychiatry.

Targeting the Triggering Causes (infections, toxins, etc.)

  • Herbal Antimicrobials
  • Prescription Antibiotics targeting the specific infections. These do NOT work for virally triggered PANS.
  • Specific treatment of Fungal/Yeast infections, using anti-fungal herbs and/or prescriptions
  • Mycotoxin Illness treatments using binders, glutathione and other detox methods

Additional treatments/supports:

To address the anxiety or other emotional symptoms, various supplements, medications, or treatments such as Frequency Specific Microcurrent may be considered. People with PANS are often very sensitive to psychiatric medications, and in my experience, the commonly used psychiatric medications frequently are not effective or have negative side effects.

Psychotherapy – for both the patient and family as this is a very stressful illness. For the patient, therapy can focus on ways to manage the obsessions and compulsions as well as emotional reactions (anxiety, depression and anger) and behaviors using Cognitive Behavior Therapy (CBT) and Exposure Response Prevention (ERP). Parents benefit from working with a therapist to both support them during the stresses that happen from PANS as well as finding alternative ways to respond to the symptoms – it is often hard to remember that the child’s is not just misbehaving but that their brain is being attacked by a serious illness. There are often feeling of isolation, grief and even PTSD. Parents need to remember to take care of themselves; this illness can deplete parents’ physical and emotional energy. Siblings also suffer and need to have time with their parents to feel they are still loved and important.

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