Meet the dad raising global understanding of brain attacking neuropsychiatric conditions

Just over a month on from completing his challenge to swim the ten largest lakes in Switzerland, Neil Gilson is continuing his mission to raise awareness of the neuropsychiatric conditions PANS and PANDAS in a bid to help more children and their families access the correct care.

British marathon swimmer, Neil, climbed onto the shore of Lake Geneva on 26th August, becoming a Guinness World Record holder and drawing international attention to the little-known neuropsychiatric conditions PANS and PANDAS through the story of his son, Jack, who is proof that earlier diagnosis and access to the correct treatment can ensure a brighter future for other children.

Understanding PANS and PANDAS: Symptoms and Diagnosis

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) are called ‘neuropsychiatric conditions’—medical conditions which have both neurological (difficulties with thinking or moving) and psychiatric symptoms. There is currently no official data on how many children are affected but the National Charity PANS PANDAS UK currently support over 8,200 people in the UK.

Many cases of PANS and PANDAS occur after an acute infection, and the condition is thought to result from an immune-system attack on the brain.

There are three primary symptoms of PANS and PANDAS—obsessive compulsive behaviours, eating restrictions and tics. People only need to demonstrate one of these symptoms along with a variety of other symptoms, including abrupt changes in behaviour, difficulties with movement, clumsiness, new sensory sensitivities, behavioural regression and the often-sudden onset of mental health challenges.

Whilst not part of the diagnostic criteria, in approximately 25% of cases parents report psychosis and hallucinations.

Jack's Story and the Path to Vital Healthcare Guidelines

Neil and his wife, Lucie, were struggling with a rapid change in their son, Jack’s, temperament after he had recovered from tonsillitis where he became aggressive and struggled with OCD, tics, and intense fear which hugely affected his quality of life and left them at a complete loss as to what to do.

“We didn’t understand what was happening,” said Neil.

“One day our son was a happy, healthy little boy and then he contracted tonsillitis and, over a few weeks, his demeanour completely changed. He wasn’t eating properly, seemed afraid of the world around him and developed a tic.

“The emotional impact on us all was significant and we thought this was the way Jack was going to be forever. After a year and a half looking for answers, we found it by chance while watching an interview on daytime TV with a Consultant Paediatrician and world leading expert on neuropsychiatric conditions. After some simple blood tests, we were finally able to get a diagnosis of PANDAS and access essential treatment.”

Despite being hard for children and families to deal with, PANS and PANDAS are treatable, especially if caught early, which is why early identification and treatment in primary care is so important. A GP may prescribe antibiotics or anti-inflammatories to treat the bacterial infection related to PANDAS before referring on for more specialist support.

Speaking about the conditions, CEO of PANS PANDAS UK, Vicky Burford, said: “PANS and PANDAS are often grouped together because they share lots of similar symptoms. They can both begin quite suddenly with symptoms that can come and go over time.

“A diagnosis of PANDAS can only be made if onset of symptoms starts between the ages of 3 years old and the onset of puberty and if there is evidence of a previous strep infection. Whereas PANS can be diagnosed in any person of any age, despite the confusing fact that the condition has the word ‘paediatric’ in the name. PANS can be caused by any infectious or environmental trigger.

“Both conditions can persist into adulthood, regardless of when symptoms began which is why a diagnosis is so important. Our mascot which was developed by our amazing Youth Advisory Board is a panda with PANS, called ‘Glitch’ which was chosen by our youth board members because their symptoms often make them feel like they’re ‘glitching’.

“It’s so important for parents to advocate for their children and understand the symptoms of these conditions. You know when something doesn’t feel right with your child so always seek a second opinion. If you notice sudden changes or significant changes over a short period of time, get them checked out by your GP and mention PANS and PANDAS so they can be ruled out.”

To encompass PANS PANDAS Awareness Day on 9th October the charity will be hosting a three-day conference (8th-10th October) where experts from around the world will come together, including Dr Susan Swedo a pioneer in the conditions, to discuss research and provide practical advice for those living with it. Clinicians from the National PANS PANDAS Steering Group will be there who are working with the charity on developing Royal College of Paediatrics treatment guidelines for the NHS to inform how children and young people living with PANS and PANDAS can be supported. These will launch soon, marking a significant breakthrough for the community.

“Many families from across Europe have contacted me after reading about my swims to say they have been affected by the conditions in some way and have been so relieved to hear of someone speaking about their experience on an international scale. It’s nice to know my challenge has put PANS and PANDAS on the map,” added Neil.

Neil will continue to raise awareness and funds for the conditions via a fundraising dinner at his family-run hotel in Ilfracombe in November and through ongoing collaborations with PANS PANDAS UK to share Jack’s story and plan his next challenge to support more families.

Donations can be made directly via Neil Gilson's Legend of the Lakes for PANS/PANDAS UK.