Bermondsey mother’s battle to get little known condition ‘often misdiagnosed as autism’ recognised

Katherine Johnston (14 November, 2018)

'It is a bitter pill to swallow that maybe he could have had a normal life'

26545Cindy, with her son as a baby

A Bermondsey mum has joined a national campaign to raise awareness of a little-known condition campaigners believe is responsible for thousands of cases of misdiagnosed autism.

Paediatric Autoimmune Neuropsychiatric Disorder Associate with Streptococcus, known as PANDAS, and Paediatric Autoimmune Neuropsychiatric Syndrome, known as PANS, are childhood conditions recognised by the World Health Organisation, but until recently have been almost unheard of in the UK.

Both are triggered by an auto-immune response, where the body tries to tackle an infection but ends up harming itself rather than just the bacteria or virus.

Their hallmark is an inflammation of the brain, which in turn causes a variety of neuro-psychiatric symptoms which come on suddenly – sometimes within 24-48 hours.

These include OCD, tics, severely restricted eating, separation anxiety and paranoia, urinary frequency, aggression and cognitive changes and overall childhood regression. Approximately 20 per cent of children affected will also experience psychosis – all symptoms which can easily be mistaken for other conditions.

It is estimated just ten per cent of doctors around the country are familiar with the illnesses.

Up until very recently, there have been no NHS treatment guidelines for suspected cases, leading to fears that thousands of children are being misdiagnosed – often with autism – and missing out on appropriate treatment while being given powerful psychiatric drugs they don’t need.

Cindy, from Bermondsey, believes her son James* may be one of them.

She is backing a 16,000 signature-strong petition for NHS England to recognise the condition and develop guidelines for doctors to treat it with anti-inflammatory drugs and antibiotics.

James, now 26, lives in supported accommodation with full-time carers, after being diagnosed with autism, Tourette’s Syndrome, and non-organic psychosis – among others – as a child following a sharp deterioration in skills and behaviour after being unwell with a high temperature, aged seven.

Cindy told the News: “Once you are diagnosed with autism it is very hard to get out from that umbrella.

“Over the years he has been given psychiatric drugs that have long term effects – and they do not work for my son.”

Cindy says James’ case fits the classic PANS profile, as his symptoms came out of nowhere.

Until 2000, he had developed normally and was well-adjusted at mainstream school.

One day he went to bed with a high temperature and what seemed to be a virus.

Throughout the next few weeks, his condition deteriorated to the point where he was angry and tearful, normal sounds would send him into a rage, and he started hallucinating, stopped speaking, was extremely fearful and lost most of his previously acquired skills.

His behaviour became so extreme he was taken out of school and after a particularly violent episode at age eight, he was put on strong psychiatric drugs, which she says left him ‘dribbling and incoherent’.

Today he has round-the-clock care.

When Cindy first learnt about PANS and PANDAS, she believed everything fell into place, but getting doctors to consider the condition continues to be an uphill struggle, despite much evidence that it exists.

“I think some doctors have got away with making me feel I am not quite clever enough,” she says.

“Generally the opinion is that I’m just not accepting the diagnosis, even though many of his symptoms do not match with autism – like extreme separation anxiety when I’m not there, chronic joint and muscular pain, numerous tics, food aversion and frequent vomiting.

“I’m on call 24/7 and often the only one who can calm him down.

“You can’t walk on eggshells for eighteen years and it not affect your life.”

The campaign for the NHS to take action, spearheaded by the charity PANS PANDAS UK, is now gathering pace.

The charity has also set up a network of NHS doctors to help promote awareness across the NHS, with treatment guidelines on their website.

Cindy is hopeful her experience could help other parents.

“I think most of the time my son is tormented”, she says. “It is a bitter pill to swallow that maybe he could have had a normal life.

“If I went to the GP now, all these years later with the same problem, I’m not sure anything would be different.

“That’s why we have to keep on campaigning.

“If you think something is not quite right, or the criteria doesn’t fit the diagnosis, push to be referred to a specialist and tell them about PANS.”

 

To sign the petition, visit www.change.org/p/nhs-england-approve-pandas-pans-as-recognised-childhood-conditions-in-the-nhs

For information and support visit www.panspandasuk.org

*James is not his real name

 

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