PANS/PANDAS - A MUCH MISDIAGNOSED CONDITION IN THE UK

Pans/Pandas is an acronym for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. There are other names for this condition including 'basal ganglia encephalitis.’ The nomenclature can be confusing. But what you need to know is that they all mean one thing - infection driven-autoimmune brain inflammation. This is a very real physical condition which triggers a raft of physical and psychiatric symptoms. In the UK, this area of medicine has not kept pace with scientific research. Pans/Pandas is often misdiagnosed as a mental disorder, condemning the sufferer to a lifetime of disastrous and damaging psychiatric interventions with no hope of recovery.

Mechanism of Pans/Pandas

How could exposure to infections trigger mental disorders? A bacterial, viral or fungal infection occurs. The body produces antibodies that recognise the infectious agent (antibodies are like security guards that recognise and fight off threats to keep you healthy). These antibodies mistakenly target and attach to brain tissues because they look similar to other things that the body is fighting off. This is called “molecular mimicry.”  Antibodies shouldn’t be able to access the brain, however they can do so when the  blood barrier is compromised and then bind to neurotransmitters (chemical substances that send signals in the brain).  This reaction disrupts brain function (friendly fire on the brain) triggering a range of neuro-psychiatric symptoms including anxiety, aggression, rage, OCD, Tics, depression, hyperactivity, insomnia, food restriction (anorexia/bulemia) and phobias. The basal ganglia and claustrum tissues in the brain are particularly affected. When trying to get the concept of how this affects the sufferer, think of the brain as a computer that gets overloaded, giving you that unwelcome multicoloured beach ball that freezes your screen and shuts down normal function.

Pans/Pandas Infections

Many infections are associated with Pans/Pandas. Some examples are Group A streptococci, Influenza A, Varicella (chickenpox), Mycoplasma, Lyme disease (Borrelia), Bartonella, Coxsackievirus. Please read the article Yes, You Can Catch Insanity by Andrew Curry, published in April 2nd, 2015 in Nautilus magazine, outlining the connection between the immune system, infections and mental health for a more comprehensive understanding of the subject.  Patients often have more than just one infection.  It can also be subclinical (very mild or not noticeable at all). There may be a genetic component that predisposes a person to getting this type of autoimmune disease.

Signs and Symptoms

Pans/Pandas is on the rise in the UK since Covid. This is because Covid can reactivate old infections and cause immune imbalance.  It can happen to people of any age, not just children. Its onset can be sudden or gradual.

What are some of the signs and symptoms?

·      Tics, involuntary movements (which can also be verbal).

·      Extreme rage/throwing objects.

·      Sleep issues/excessive fatigue.

·      Urinary problems/bedwetting.

·      Restrictive eating/avoidance of food which can cause weight loss/deficiencies.

·      Unusual gait, poor concentration.

·      Deterioration of handwriting, academic performance and mental regression.

·      OCD-like symptoms, such as repetitive actions, fear of germs, developing habits/rituals that must be followed to avoid anxiety.

·      Behavioural abnormalities and personality changes i.e. anxiety, fear, not thinking straight.

·      Sensory problems i.e. sensitivity to light, sound and touch.  Mydriasis (medical term for when pupils of the eyes become unusually large or dilated).

·      Joint/arthritic pain.

·      History of exposure to strep and/or other infections. There is often a family history of autoimmunity.

Testing for Pans/Pandas

When you have been working with chronic infections for years, Pans/Pandas is pretty easy to recognise from a thorough case history and the symptoms. Moleculera Lab in the US has a comprehensive Pans/Pandas questionnaire on its website.  Lab testing is important as you need to know what is driving the inflammatory process so you can plan the right treatment.  A comprehensive set of tests could include the following:

·      Immune function tests - Natural Killer and CD3 cells, Full Blood Count, Immunoglobulins (IgG, IgM, IgE), IgG subsets.

·      Antinuclear Antibody (ANA) - unspecific marker for autoimmunity.

·      TNF Alpha antibodies - a marker for excessive inflammation, also a driver of autoimmune diseases.

·      Infections (as appropriate for the  case) - Antistreptolysin O (ASL), Anti-Dnase B, Mycoplasma, Coxsackievirus, Borrelia, Bartonella, EBV, Sars Cov 2 and others.

·      Liver Function

·      C-Reactive Protein

·      Vitamin D and Parathyroid Hormone

·      Full thyroid panel

·      Nasal/oral swab for strep/culture

·      Brain Autoimmune Panel (tests for antibodies that might attack the brain which are linked to Pans/Pandas and other neuropsychiatric conditions).

·      KPU (for pyrrole disorder) - symptoms can overlap.

·      Stool, adrenal and other functional tests as required.

Treatments for Pans/Pandas

Once we have the lab results, we can target treatment more intelligently and effectively.  The stable datum to always keep in mind is that anything that stimulates the immune system will trigger a worsening of symptoms. That means that poorly prescribed medication or an inflammatory food that create irritation in the gut, will create a symptom flare. Monitoring response to all interventions is key.

There are two broad therapeutic approaches for Pans/Pandas: pharmaceutical and non-pharmaceutical. A collaborative approach is optimum, using a team of practitioners i.e. doctors, nutritionists, functional medicine naturopaths, ENT and dental specialists all working together in the same direction on the case.  Never separately or randomly if you don’t know the biochemical pathways you are affecting! Sometimes, the non-pharmaceutical approach works well.  In very severe, bed-ridden cases, however, pharmaceuticals can halt a dangerous decline. It is optimum to work with practitioners who value both types of treatments.

Pharmaceutical tools for Pans/Pandas can include: Ibuprofen antibiotics, steroids, IVIG (intravenous immunoglobulin, plasmapheresis) to tackle infections and modulate the aberrant immune response and decrease inflammation. Short courses of antibiotics are advised to avoid the dangerous situation of bacterial resistance.  Bear in mind that with a compromised blood brain barrier, higher concentrations of drugs will find their way into the brain.

Non-Pharmaceutical tools for Pans/Pandas can include: Investigation of tonsils, adenoids and teeth for focal infections (that affect the body systemically), treatments for throat and CCSVI (Chronic Cerebrospinal Venous Insufficiency - poor blood flow in the veins that drain the brain and spinal cord), Wifi shielding, specifically targeted neutraceuticals and phytonutrients to modulate the immune system and target active infections, low dose immunotherapy/homeopathic nosodes, sleep support, low oxalate, gluten-free/casein-free diet, repair of blood brain and gut barriers and other interventions as needed.

Help for Parents

In a political climate that prefers to shunt patients down the psychiatric route, it is recommended that families with a Pans/Pandas patient educate themselves about the condition and build up a support network. We know that many UK families with children who have Pans/Pandas find themselves subject to distressing safeguarding referrals or allegations of Fabricated or Induced Illness (FII). Families who are already struggling to cope with this distressing condition are being further traumatised by being blamed for their child’s illness. The message is clear: medical politics must change to favour patients not big corporations and medical practitioners in the UK must work harder to get educated.

Some support links/resources:

·      Pans/Pandas UK

·      AONM (Academy of Nutritional Medicine) - Pans/Pandas section

·      Moleculera Labs website

·      The Children’s e-hospital

·      Youtube: My Kid is not Crazy: A search for hope in the face of misdiagnosis.

·      Youtube: Brain On Fire: My Month of madness by susannah Cahalan.

If you have a family member who may be struggling with this condition, please get in touch with the Good Health Clinic on goodhealthclinic@outlook.com to request a free 30 minute Enquiry Call or book an appointment. Please note that an Enquiry call is not a consultation but an exploratory call to see if this is a clinical approach you wish to pursue.

To your very good health,

Suzanne Jeffery (Nutritional Medicine Consultant)

M.A.(Oxon), BSc.(NMed), PGCE, MNNA, CNHC

The Good Health Clinic at The Business Centre, 2, Cattedown Road, Plymouth PL4 0EG

Tel no: 07836 552936/ Answer phone: 01752 774755 

Disclaimer:

All advice given out by Suzanne Jeffery and the Good Health Clinic is for general guidance and informational purposes only.  All advice relating to other health professionals’ advice is for general guidance and information purposes only. Readers are encouraged to confirm the information provided with other sources.  Patients and consumers should review the information carefully with their professional health care provider. The information is not intended to replace medical advice offered by other practitioners and physicians. Suzanne Jeffery and the Good Health Clinic will not be liable for any direct, indirect, consequential, special, exemplary or other damages arising therefrom.