9th October is PANS/ PANDAS awareness day, but what is PANS/ PANDAS?
WHAT IS PANS/PANDAS?
Many parents of children with special needs have a niggling suspicion that something might be ‘different’ about their son or daughter, long before the diagnosis arrives. They may have noticed, for example, that the child is:
- Highly anxious
- Developmentally behind their peers
- Exhibits repetitive behaviour
- Has frequent meltdowns
Finding out that this is due to neurodiversity is often a great relief to families.
But strangely, for some children, challenging behaviour appears almost overnight. Although it might appear that the young person has suddenly developed a neurological disorder, it is actually a result of illness or infection which has triggered an immune response. This is known as:
- ‘PANS’ (Paediatric Acute-onset Neuropsychiatric Syndrome) or;
- ‘PANDAS’ (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections)
PANS AND PANDAS ARE ALMOST UNKNOWN IN THE UK
This immune reaction causes brain inflammation which leads to a host of behavioural issues which mimic autism and mental health conditions such as anxiety. Symptoms might include:
- Severe obsessive-compulsive disorder (OCD)
- Tics
- Developmental regression and the loss of age-appropriate language
- New sensory sensitivities to light, sound or taste, for example
- Sleep disturbances
- Depression
- Emotional volatility
- In extreme cases, children can suffer from hallucinations and seizures
But astonishingly, many health professionals in the UK have never heard of PANS/PANDAS and those who have don’t necessarily acknowledge them as being ‘real’ illnesses. This means it is virtually impossible to obtain a diagnosis and children are often mistakenly labelled as having ASD or other anxiety-based conditions – although to complicate matters, a child can have autism or anxiety and go on to develop PANS/PANDAS as well.
TERRIFYING FOR PARENTS
Steph Walsh has a son with the condition. She mentions that, “at almost age 3 my son pretty much changed overnight. He went from a happy, chatty toddler to a non-verbal child and lost many previous skills that he had. As a parent, this is pretty terrifying. Convinced that our son had an underlying medical condition we put to one side the constant non-medical opinions that our son had ASD as it did not sit well with us. A child does not go from having perfect development to changing overnight.”
AN AUTOIMMUNE DISEASE TRIGGERING A FLARE-UP
Four years on and we still don’t have our child back, but we are very slowly getting there. This is an autoimmune disease that causes inflammation of the brain, and anything can trigger a flare-up. By anything I mean eating the wrong food, being near someone that is unwell, hay fever, or an insect bite to name but a few.
UNMANAGEABLE ANXIETY
Jane Bird, who lives in North Lincolnshire, is the mum of six children, three of whom have PANS/PANDAS. “My son Lewis, who’s now fifteen, was always different. He was late potty-training and walking and he had separation anxiety,” she explains. “Once he started school, he was always getting into confrontations with other kids. Looking back, I think I should have pushed for an autism diagnosis. All the signs were there.”
Despite his existing challenges, Lewis’s behaviour took a sudden nose-dive aged eight. His eyesight and handwriting declined while his anxiety went through the roof, and he was having meltdowns and daily panic attacks because of intrusive thoughts. Aged twelve, he suddenly developed an intense fear of being contaminated by germs which left him suicidal.
TRIGGERED BY A THROAT INFECTION
Jane joined a Facebook support group for parents of kids with severe OCD and a woman mentioned PANS/PANDAS. “I’d never heard of it before but when I researched it, I realise Lewis ticked every box apart from the hallucinations. I realised that his first downturn had coincided with a bout of tonsilitis.”
A few months later, twins Mathew and Nicholas also developed the condition, aged ten, following a chest infection, changing from easy-going, happy boys to violent, suicidal, children who refused to eat and screamed in rage and pain.
EXTREMELY DIFFICULT TO ACCESS MEDICAL HELP
Unfortunately, getting appropriate help for her sons has been far from straightforward, Jane laments. Lewis was originally seen by CAMHS and the family GP prescribed antibiotics for all three boys which alleviated some symptoms almost immediately. But as soon as they got on the waiting list to see a specialist, they were discharged and told that the hospital no longer supported kids with PANS/PANDAS or even recognised the condition. The family has also had to fight for amendments to the boys’ EHC Plans and defend themselves against accusations of ‘making up’ the children’s illnesses.
“It’s been unbearably stressful for all of us,” Jane sighs. “The boys are seeing a private immunologist now who prescribes antibiotics to control their symptoms, but they could get worse any time they come into contact with any kind of infection. We’re always very aware of the risk of bringing germs into the house.”
Steph shares a similar story:
“It took almost 3 years to figure out what was wrong with him and this was only by pure chance when he was given antibiotics for an ear infection and within 36 hours he was like a different child. A Google search of “change in child’s behaviour” led us to an article about a child that had PANS/PANDAS. Shortly after that we contacted the charity for some advice and a list of doctors that could help us.”
TREAT THE CHILD AS AN INDIVIDUAL
SEN Tutor Sammie spent eight years as a classroom teacher in a special school and recalls a young lad who eventually received a diagnosis of PANS/PANDAS. “Within my experience, the presentation of PANS/PANDAS may initially appear similar to other special educational needs, in particular autism and therefore his parents had to do a lot of research in order to achieve the correct diagnosis. The child I previously taught had a variety of food allergies and his parents had noticed that if accidentally consumed, then these could cause a change in nature for him.”
“Although it’s definitely useful to know what a student’s diagnosis is, in a way, it doesn’t matter,” she continues. “A good SEN teacher or tutor will always treat the child’s individual needs, no matter what caused them.”
ADVICE FOR PARENTS
Steph’s advice to any parent who notices a sudden change in their child is to contact the charity
https://panspandasuk.org/. They will be able to give you all the advice that you need. Sadly, many NHS doctors have either not heard of this condition or are very quick to dismiss it so be prepared to pay for private consultations.
This webpage may also be useful: https://geneticalliance.org.uk/gauk-news/news/be-pans-and-pandas-aware/
PANS/PANDAS awareness day, 9th October: https://pandasnetwork.org/get-involved/awareness-day/
