Dr Leila Masson's Blog

Have you heard about PANDAS?

Have you heard about PANDAS?

In my last newsletter I wrote about ADHD pretenders. In that line I would like to introduce a relatively unknown disease in children that also mimics mental health problems, but is a reaction to an infection, often a strep throat.  This disease has the innocent sounding name of PANDAS but is anything but sweet and cuddly – and it is not rare, affecting 1 in 200 children (in the US – the numbers are thought to be similar in other developed countries). Children present with a sudden onset of severe anxiety and OCD behaviours: a child who used to be happy and easy-going all ofy 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 new learning difficulty – for example 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 in particular is very typical for PANDAS). 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 autoimmune disorder.

PANDAS stands for paediatric auto-immune neuropsychiatric disorder associated with streptococcal infection. The child’s immune system responds to a strep infection by producing antibodies against the strep bacteria and those antibodies attack not just the streptococci but also brain cells that have receptors on their surface that look just like strep. There are other autoimmune disorders caused by strep: Rheumatic fever, for example, which used to be a common problem before we had antibiotics. Nowadays it is mainly found in developing countries but, surprisingly, is still quite common in New Zealand. In rheumatic fever the antibodies made against strep cross react with heart cells and destroy them – this can lead to destruction of one of the heart valves. The process is called molecular mimicry. Children with rheumatic fever are treated with antibiotics until they become adults, as the risk of destroying the heart valve is so great.

Every paediatrician knows about rheumatic fever. Unfortunately not all of them know about PANDAS. The mechanism is similar – an autoimmune reaction after an infection which results in inflammation and destruction of cells – again by molecular mimicry. With PANDAS it is brain cells that are being attacked and the child shows behaviour and mood changes, not necessarily signs of an infection.  To make things even more complicated many other infections may cause a similar picture: viruses, mycobacteria, and even parasites.

In 1998 Dr Sue Swedo from the National Institutes of Health realised what was going on and termed this new disorder PANDAS for those caused by strep. In 2012 the wider term PANS (paediatric auto-immune neuropsychiatric syndrome) was introduced because it became clear that many other germs besides strep could be the cause – for example viral infections. 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 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
  6. Sensory or motor abnormalities
  7. Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency

As you can see 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, who 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 auto-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 the 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? Of course you need to stop the infection – in case of streptococci this is usually done with long-term antibiotics, which can be followed by herbal treatment. A current favourite is a Siberian conifer needle extract,Taiga, that suppresses strep quite effectively. Whenever antibiotics are given, probiotics should follow to rebuild the gut flora. Since streptococci produce a lot of acidity it is wise to choose a D-lactate free probiotic. Mutaflor, which contains E coli (the healthy kind – they produce tryptophane, a precursor of serotonin, the calm and happy neurotransmitter) is another good choice. Probiotics that contain streptotocci should be avoided, as they could reignite the autoimmune response. 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), zinc, and NAC. N acetyl cysteine (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 reduce inflammation and may be useful in autoimmune disorders, including PANS. Vitamin C can boost the immune system. B vitamins may help to prevent recurrences.

Children are often trialed on anti-inflammatory medications such as ibuprofen (neurofen) or a short burst of steroids. If the child becomes significantly calmer and less OCD with these that is proof that inflammation plays a role and that you are not dealing with “just a mental health issue”. In very severe cases some children are treated in hospital with IVIG (intravenous gamma globulin) to reduce the inflammation.

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 servings per day – to reduce inflammation and to feed the beneficial gut bacteria, as these thrive on the fibre from veggies. 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. 

Other therapies include CBT (cognitive behaviour therapy) to reduce tics and obsessions and SSRI antidepressants.

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.

On this site you will find information for concerned parents and for professionals. It has a link 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 you can take to your doctor, and a regular newsletter.

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 auto-immunity.
Share this with your friends and family to spread the word about the possibility of psychiatric symptoms being caused by infections and auto-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 25% of young people suffer from mental health problems, we cannot afford to wait any longer. 


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