PANS - the Mystery Illness

Have you heard about PANS?

I would like to introduce a relatively unknown disease in children that mimics mental health problems but is a misguided immune reaction to an infection, often a strep throat, mycoplasma, or a viral infection, including COVID-19. PANS, or Paediatric Acute-onset Neuropsychiatric Disease, is not rare; it affects 1 in 200 children (in the US – the numbers are thought to be similar in other developed countries). It is most common in primary-school-aged children. Children present with a sudden change in behaviour, usually OCD behaviours and/or food restrictions, often mistaken for anorexia; also anxiety and phobias: a child who used to be happy and easy-going all of a sudden cannot bear to be separated from a parent at night or in school; they may wash their hands obsessively or refuse to eat food, as they have a new fear of germs; they may develop new, unusual behaviours, such as flipping light switches compulsively, or touching objects, compulsively performing symmetric movements with both hands or feet. Some children develop tics, such as eye blinking, shoulder shrugging, snorting, or throat clearing.

These behaviours are often accompanied by a developmental regression or a new learning difficulty – for example, baby-talk, or a child who used to be good at maths no longer gets the concepts – deterioration of their handwriting and drawing skills, and frequent urination – a child who used to be dry starts to wet him or herself or just has to run to the toilet very frequently (this symptom, pollakiuria,  in particular, is very typical for PANS). In the past, these children with severe anxiety and OCD were thought to have a mental illness and treated with psychotherapy and psychiatric medications. We now know that many of these children have an immune disorder.

In PANS, the child’s immune system responds to an infection by producing inflammatory Th17 cells, which travel along the olfactory nerve to the brain and enter the brain through the olfactory bulb. The TH17 cells produce IL17, which causes neuroglia inflammation in the basal ganglia.

The diagnosis of PANS is based on the child having an abrupt onset of OCD and at least 3 other symptoms; on average, children have 5 out of the following 7 symptoms:

Sudden onset of OCD and/or severe food restrictions

Plus at least 2 symptoms out of the following 7 categories:

1. Anxiety

2. Emotional lability and/or depression

3. Irritability, aggression and/or severely oppositional behaviours

4. Behavioural (developmental) regression

5. Deterioration in school performance, dysgraphia

6. Sensory or motor abnormalities

7. Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency

The diagnosis of PANS is based on clinical findings. Laboratory markers are not a necessary part of the diagnosis. They can be helpful in finding the trigger, but negative lab tests do not rule out PANS.

I have seen children who, from one day to the next, became unbelievably anxious or oppositional and seemed like possessed. One boy could only repeat the same words over and over. Other children had severe tics and could barely sit still.

So, how does this happen, and what can be done to help a child with this disorder?

Obviously not every child who has an infection develops this neuropsychiatric disorder, just as not everybody who eats gluten develops coeliac disease. There is a still undefined genetic predisposition (probably a lack of neuroprotective genes), that weakens the child’s immune system; then an environmental stress factor (this could be smoke or lead or a pesticide) disrupts the blood brain barrier (which usually protects the brain from infection and toxins) – and allows specific immune cells called TH17 to infiltrate the brain and set off the immune attack.

I do not want to get too deeply into the complicated biochemistry, but rather talk about what can be done to help a child with this problem. And I also want to discuss how PANS is probably a large spectrum, just like autism is. While 1 in 200 children have full-blown PANS, many more children may be affected by less intense brain inflammation set off by infection or an overgrowth of “bad” gut bacteria and have mood, learning, and behaviour issues.

So first of all – what can be done to calm down the inflamed brain of a child with PANS? Children are often trialed on anti-inflammatory medications such as ibuprofen (Nurofen) for 3 days or a 5-day burst of steroids as a diagnostic test and also as the first step in treatment. If the child becomes significantly calmer and less OCD with these interventions, that is proof that inflammation plays a role and that you are not dealing with “just a mental health issue”.

The second step in treatment is to stop the infection – in case of streptococci, this is usually done with antibiotics, which can be followed by herbal antimicrobial treatment. A current favourite is a Siberian conifer needle extract, Taiga, that suppresses strep quite effectively. Whenever antibiotics are given, multi-strain probiotics containing bifidobacterial and lactobacilli should follow to rebuild the gut flora. Mutaflor, which contains E coli (the healthy kind – they produce tryptophane, a precursor of serotonin, the calm and happy neurotransmitter) is another good choice. Nutrients that can help to dampen the inflammation in the brain include vitamin D, high dose omega 3 fatty acids (at least 1000mg of combined DHA and EPA), SPM (Pro-resolving factors – a product made from omega 3 by enzymatic conversion; SPM resolves inflammation rather than just suppressing it), zinc, and NAC. N acetylcysteine (NAC) has an anti-inflammatory effect and specifically reduces OCD behaviours. It is also the precursor of glutathione, the body’s most potent antioxidant and anti-inflammatory molecule. Curcumin or turmeric reduces inflammation and may be useful in autoimmune disorders, including PANS. Vitamin C can boost the immune system. B vitamins may help to prevent recurrences.

For more severely affected children, immune modulation with PEA, LDN (low-dose naltrexone), and CBD may be helpful. The most severely affected may need to be treated in hospital with IVIG (intravenous gamma globulin) to reduce the neuroinflammation.

Dieticians and nutritionists recommend an anti-inflammatory diet. This means avoiding all artificial additives, as well as sugar and all processed foods. In severe cases, a trial off dairy and gluten may be appropriate and helpful. Vegetables should be consumed – at least 5 handfuls per day – to reduce inflammation and to feed the beneficial gut bacteria, as these thrive on the fibre from vegetables. In fact, the best way of growing a healthy gut flora (and healthy is the opposite of inflammatory) is eating lots of different vegetables. Some children are allergic or sensitive to specific foods and may benefit from excluding those until their immune system has calmed down.

If you are interested in learning more about this fascinating disorder triggered by an infection and expressed by mental health symptoms, I recommend the excellent www.pandasnetwork.org website.

Children with PANS need the support of a psychologist who is familiar with PANS. Useful therapies include CBT (cognitive behaviour therapy) to reduce tics and obsessions and SSRI antidepressants (low doses work best for PANS).

If you are interested in learning more about this fascinating disorder triggered by an infection, I recommend the excellent www.pandasnetwork.org and www.pandasppn.org (Pandas Physicians Network) websites, where you will find information for concerned parents and for professionals. They have links to a cool PANS symptom tracker app; to the must-watch “My child is not crazy” movie about a child with PANS, a PANS/PANDAS factsheet and treatment flowcharts.

1 in 200 children is affected by this fascinating and potentially devastating disorder, and most of these children will be treated with psychiatric medication instead of addressing the true cause of their neuropsychiatric symptoms: inflammation and immune activation. Share this with your friends and colleagues to spread the word about the possibility of psychiatric symptoms being caused by infections and immune disorders. You cannot help but wonder if other ”mental illnesses” such as bipolar disease and depression, may have a physical basis. Researchers, please hurry up and find out more about this! In a time when more than 25% of young people suffer from mental health problems, we cannot afford to wait any longer.