The $30 million question: Why PANS-PANDAS remains underdiagnosed

Awareness of PANS-PANDAS remains low,even among doctors - and many children get wrongly diagnosed, says Professor Rajat Gupta, a consultant in paediatric neurology at Birmingham Children's Hospital. The conditions result from disruption to the normal signals coming from the brain, leading to the sudden onset of obsessive behaviors and tics.

These conditions are triggered by minor everyday infections, such as flu, Covid, or a tummy bug. The immune system 'misfires' and launches an attack on the body, specifically the brain , rather than on the incoming bug that caused the infection.

According to Professor Rajat Gupta, awareness of PANS-PANDAS remais low, even among doctors - and many children get wrongly diagnosed. This lack of understanding can lead to delayed treatment, causing unnecessary suffering for children and their families .

Jack's story: A life changed overnight

A young boy's life was changed overnight by a bout of tonsillitis when he was 18 months old. His parents, Neil and Lucie, feared he would never lead a normal life due to his sudden change in behavior.

Jack, now 10, developed aggressive behavior, refused to eat, and had a tic. He was even hospitalized after cutting his face during a tantrum. Despite suggestions that Jack may be autistic, Neil and Lucie were convinced something else was at play.

They searched for answers and stumbled upon a TV show featuring Dr Tim Ubhi, a consultant paediatrician, who explained that Jack's symptoms could be caused by two little-known conditions - PANS-PANDAS.

The standard treatment: A two-week course of antibiotics

Along with ibuprofen or steroids, which reduce the brain inflammation, this is the standard treatment offered for PANS-PANDAS. The results were almost immediate for Jack: 'We started to get our boy back,' Neil recalls.

Jack was diagnosed with PANDAS and started on a two-week course of antibiotics. the results were almost immediate for Jack: 'We started to get our boy back,' Neil recalls.

Who is the unnamed buyer? The search for answers

Despite the growing awareness of PANS-PANDAS, many children are still being wrongly diagnosed. According to Professor Rajat Gupta, awareness of PANS-PANDAS remains low, even among doctors - and many children get wrongly diagnosed.

This lack of understanding can lead to delayed treatment, causing unnecessary suffering for children and their families. The search for answers continues, and it is up to medical professionals, parents, and caregivers to raise awareness and push for better diagnosis and treatment.