Just over a month after 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 and help more children and their families access appropriate care.
The British marathon swimmer reached the shore of Lake Geneva on 26th August, becoming a Guinness World Record holder. His swims have drawn international attention to the little-known conditions through the story of his son, Jack, whose experience highlights how earlier diagnosis and access to appropriate treatment can help create a brighter future for other children.
What are PANS and PANDAS?
PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) are neuropsychiatric conditions, meaning they involve both neurological symptoms, such as difficulties with thinking or movement, and psychiatric symptoms. There is currently no official data on how many children are affected, but the national charity PANS PANDAS UK currently supports more than 8,200 people in the UK.
Many cases occur after an acute infection, and the conditions are thought to result from an immune system attack on the brain.
There are three primary symptoms: obsessive-compulsive behaviours, eating restrictions, and tics. People only need to demonstrate one of these, along with a variety of other symptoms. These can include abrupt changes in behaviour, difficulties with movement, clumsiness, new sensory sensitivities, behavioural regression, and the often sudden onset of mental health challenges. While psychosis and hallucinations are not part of the diagnostic criteria, parents report them in approximately 25% of cases.
Vicky Burford, CEO of PANS PANDAS UK, 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’.”
Jack’s story
Gilson and his wife, Lucie, were at a complete loss when their son’s temperament changed rapidly after he recovered from tonsillitis. Jack became aggressive and developed OCD, tics, and intense fear, which had a significant impact on his quality of life.
“We didn’t understand what was happening,” said Gilson.
“One day our son was a happy, healthy little boy and then he contracted tonsilitis 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.”
Although PANS and PANDAS can be difficult for children and families to deal with, they are treatable, particularly when identified early. This makes timely recognition and treatment in primary care important. A GP may prescribe antibiotics or anti-inflammatory medication to treat the bacterial infection associated with PANDAS before referring the child for more specialist support.
Burford added: “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 mark PANS PANDAS Awareness Day on 9th October, the charity will host a three-day conference from 8th–10th October. Experts from around the world will discuss research and provide practical advice for people living with the conditions, including Dr Susan Swedo, a pioneer in the field.
Clinicians from the National PANS PANDAS Steering Group will also attend. The group is working with the charity to develop treatment guidelines with the Royal College of Paediatrics for the NHS, setting out how children and young people living with PANS and PANDAS can be supported. The guidelines are due to launch soon, marking a significant development 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 Gilson.
Gilson will continue to raise awareness and funds through a fundraising dinner at his family-run hotel in Ilfracombe in November, as well as through ongoing collaborations with PANS PANDAS UK to share Jack’s story and plan his next challenge to support more families.