PANS/PANDAS: 'Their personality completely changed overnight'
We're hearing the stories of children affected.
Last updated 23rd Sep 2024
We're hearing the stories of children across the country, whose personalities have completely changed - with the cause a rare brain condition.
A charity say they're currently supporting 6,000 families in the UK, who have children believed to be suffering with PANS (Paediatric acute-onset neuropsychiatric syndrome) or PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
They are both autoimmune conditions that usually develop suddenly following an illness, like Scarlett Fever for example.
Antibodies created to fight the infection go on to mistakenly attack the brain, leading to symptoms like massive changes in behaviour, including severe OCD.
"He said he wanted to die"
Harry, whose name we've changed, was a happy nine-year-old boy in Lichfield, getting involved in sports and doing well at school, when he caught Scarlett Fever at the end of 2019.
A couple of months later, he started to develop severe OCD, and started to refuse to eat and drink. He also started writing in his diary that he wanted to die.
Dad Richard - whose named we've also changed, along with his mum initially took him to see his GP, but after his condition got worse, was taken to hospital for two weeks.
"He just seems less happy, less willing to communicate, and his sleeping pattern is all over the place. He's not been able to have a proper sleep for a very long time.
"Everything changed pretty much overnight".
After being discharged, Harry was supported by the local CAMHS team (Child and Adolescent Mental Health Services).
But Richard then discovered some online articles about PANS/PANDAS and started doing some research
"The phrase I would use is he's trapped in his method of living for nearly four and a half years now.
"He doesn't leave the house and won't let anybody see him - refuses to talk about his illness or condition
"He lives a completely separate life - isolated from everybody".
It's believed that Harry has PANDAS, but after a few traumatic experiences in hospital, he rarely if ever leaves his room.
"The earlier you treat, the better the outcome seems to be"
Harry was treated briefly by Professor Rajat Gupta, a Consultant Paediatric Neurologist at Birmingham Children's Hospital.
He's one of the very few experts in the UK on PANS/PANDAS and says he's treated around 100 children during his career that he believes had the condition.
Because it's seen as so rare, and there is no specific test to identify the condition, no clinical guidelines exist for doctors to use to diagnose it.
Some doctors dispute whether the condition even exists.
Professor Gupta says;
"They have an acute illness, something like a sore throat or earache, and then soon afterwards there's an abrupt change in behaviours, including with obsessive compulsive disorder, plus restricted eating amongst other things.
"The general feeling is that the earlier you've considered a diagnosis after you've ruled out other possible diagnoses and the earlier you treat, the better the outcome seems to be.
"Sometimes the treatments can be simple as giving a two week course of antibiotics.
"What's also very important is to not sort of just hone in on what it must be. You need to try to exclude other conditions which might present with behavioural problems in children.
"Because obviously they need their appropriate treatment if that's what they have."
"It's a dramatic and stark change"
Katie from Barrow in Cumbria - whose name we've changed - started seeing sudden behavioural changes in her daughter when she was five.
After multiple doctors appointments and being referred to mental health services - she says she has PANS.
She gradually gets better after a few months - but for Katie - it's a constant worry - knowing a flare up can be just round the corner.
"It's an overnight kind of switch really, with things becoming very bad.
"It's a dramatic and stark change and they're quite defined and distinct lumps of time.
"There still isn't a clear clinical pathway for doctors - it makes things difficult and we think it's probably slowed things down in terms of disease progression."
"We believe it's rarely diagnosed"
The charity PANS PANDAS UK says they are currently supporting around 6,000 families across the country, but believe there are more out there that need help.
A recent survey they carried out suggested that as many as 95% of GPs did not know about the conditions.
Vicky Burford is the co-founder and director of the charity - her son had PANDAS when he was 12 and has since made a full recovery.
"Whilst it's widely regarding as 'rare', we believe it is actually rarely diagnosed.
"There are few people with an actual diagnosis, but in reality there are many many people who are displaying the symptoms.
"Knowing something's wrong with your child, and knowing there isn't any support for them, that's a really difficult place to be.
"It is a very challenging diagnosis to make, but there are some doctors with real expertise in these conditions now."
The charity recently sent an open letter to the Health Secretary, calling for action to help raise awareness.
They've also begun work alongside multiple health bodies, including the BPNA (British Paediatric Neurology Association) & the Royal College of Nursing to develop clinical guidelines for doctors to use.
It's hoped these will be in place within the next 12 to 18 months.
The Department of Health have told us they 'look forward to seeing the outcomes of the collaborative work that the working group, supported by NHS England, has embarking on to develop standards of care for those with both PANS or PANDAS in the UK'.
None of the parties involved in the work to develop clinical guidelines said they could comment whilst the work was ongoing.
Training on PANS though is now included in the Royal College of Paediatric and Child Health curriculum.
We also got in touch with NICE (National Institute for Health and Care Excellence), who told us whilst they're not yet developing guidelines for PANS PANDAS, they've received a suggestion that it's a topic they might consider and at the moment it is 'awaiting consideration'.