What is PANS and PANDAS?

“One day everything was fine and then the next day, they just changed….”

That is usually how a parent or caregiver of a child with PANS or PANDAS begins their story.  They have memories of their child smiling, being happy and meeting their developmental milestones, and then one day, things changed. Their child becomes distant, often regresses, anxiety may flare, obsessive behaviours appear, outrageous tantrums, unusual irritability, aggression, oppositional behaviours, sleep disturbances, bed wetting begins and unusual verbal or motor actions (tics).

That is the clinical feature that suggests that a child has PANS or PANDAS… an ACUTE ONSET OF SYMPTOMS.

PANDAS stands for Paediatric Autoimmune Neuropsychiatic Disorder Associated with Streptococcal infections.

When studying OCD, the National Institute of Mental Health noticed that a proportion of children had a sudden, abrupt onset of OCD (obsessive compulsive disorder) behaviour, often with a vocal or motor tic along with other neuropsychiatric symptoms and it came unexpectedly after a strep infection.

“one day everything was fine, then they got sick and the next day everything changed….”

OCD usually has a gradually onset, but in these children the behaviours came on so suddenly and out of the blue that it did not fit the usual OCD presentation and the streptococcal infection was the one thing they all had in common.

The phenomena was explored and it was found that these children had an inappropriate response within their immune systems that caused the behaviours and the disorder was labelled as PANDAS.

Over time, it was noticed that there were children who had the same abrupt, sudden onset of similar symptoms, but without a streptococcal infection. In these kids “something” caused the immune system to react inappropriately and cause the same behaviours.

This is when it was realised that it doesn’t have to be a Group A streptococcal infection to trigger the immune system. It could be any viral, bacterial or parasitic infection including herpes, Epstein barr, influenza or Lyme. It could also be an environmental trigger such as mould or a chemical exposure. These children were diagnosed as having PANS.

PANS stands for Paediatric Acute-onset Neuropsychiatric Syndrome.

It is the trigger that differentiates between PANS and PANDAS.

PANS and PANDAS is a new disorder and syndrome and very poorly understood by most practitioners. It is often diagnosed as clinical OCD, ODD, anxiety, ASD or ADHD.  The key piece of information to listen for is in the story that the parents tell you… “it all happened so suddenly”. This is the piece of information that lets you know that it could be PANS or PANDAS and the behaviour is coming from a place of inflammation and that inflammation is caused by the immune system.

WHAT TO LOOK FOR WITH PANS and PANDAS

PANDAS must have:

·         – the sudden onset of OCD and/or tics or be episodic where is relapses

·         – pre-pubertal symptom onset

·         – a related group A streptococcal infection

·         – other neurological abnormalities

PANS must have:

·         -sudden onset of OCD or severe restriction of food intake (which can be another form of OCD).

·         -presentation of at least 2 other neuropsychiatric symptoms

·         -symptoms are not better explained by a known neurological or medical condition

Other neurological abnormalities or neuropsychaitic symptoms can include

·         -Anxiety (in particular separation anxiety)

·         -Generalised anxiety

·         -Irritability

·         -Aggression

·         -Severe oppositional behaviours

·         -Behavioural regression (including baby talk and temper tantrums)

·         -Deterioration in school performance (including regression in hand writing)

·         -Concentration difficulties and loss in academic performance (particularly maths)

·         -Hyperactivity, restlessness and abnormal movements

·         -Sensory or motor abnormalities

·         -Sleep disturbances

·         -Increased urinary production or bed wetting

·         -Sensory abnormalities including hyper-sensitive to lights or sounds

·         -Distortions of visual perceptions and occasionally visual or auditory hallucinations.

So often, the parents of these children will be told “Oh, that’s just kids”, “It’s the terrible 2’s”, “You need to be more disciplined with them”, “they will grow out of it, it’s just a phase” but there is so much more going on with these kids. I, myself, was told these things, but as a parent, you know when things are not right.

With the parents of my clients, I let them know that it is all coming from a place of inflammation. It is the inflammation that is occurring in the brain that is causing the behaviour. It is like their brain is on FIRE. The first thing that we need to do is to control the inflammation. We need to protect the brain. I have seen kids whose tics have stopped after 2 weeks of calming the inflammation. For some kids, they are a new person after a few days and the parent can’t believe it! This though, is not fixing the problem, it is only dealing with the inflammation.

Next, we need to identify the trigger. Strep can be quite hard to identify as a trigger as group A streptococcal infections are quite common in all children and testing for streptococcal titres does not necessarily prove or exclude PANDAS. I will first try to identify if the trigger was from an infectious origin (viral, bacterial or parasitic) and rectify that first before I move onto environmental triggers. Children who have PANS and PANDAS are very sensitive to begin with, so there could be multiple triggers including infectious and non-infectious triggers.

Then we need to move onto the immune system. The immune system needs to be modulated and regulated so it can stop causing the inflammation within the brain. There are many factors involved in this process and working on gut health is just one part. Poor gut health will contribute to poor immune health and when you look at the case history of these children, many of them will have digestive concerns. The immune system is incredibly important as this is what will stop the child from having flares in the future. If the immune system is restored correctly and kept strong, then the child, ideally, should not flare the next time they get sick.

As, I’ve previously mentioned, children with PANS and PANDAS are usually very sensitive so any support provided needs to be done slowly and gradually.

PANS and PANDAS are conditions that can be supported and relief can be found for these children. All practitioners need to have a better understanding of the disorder and syndrome so these children can be offered the care they deserve and options for recovery.