TURNING POINT

When Mark Thomas’s son Isaac, now 15, arrived home from primary school one Friday in February 2020, his parents had no idea all their lives were about to change. “He came home on the Friday pretty much normal, but by Monday he was a totally different child,” says Mark.

Over the course of the weekend, Isaac, then nine, stopped eating and sleeping, developed a phobia of water and clothes, and become consumed by OCD rituals. “He was beyond distressed and was clawing at his skin and crying all the time. By Monday he had stopped drinking so we took him to A&E, but he was so distressed he tried to jump out of my car when we were on the dual carriageway, shouting ‘Let me die’. We had no idea what was going on.”

At the hospital, doctors said Isaac had autism, which he had masked for years, eventually causing a breakdown. “He had never been diagnosed with any form of autism and we had never noticed anything to suggest he might have it. However, the doctors said it was the only explanation. We just wanted him to get help so had to go along with their theory, but it made absolutely no sense to us.”

The hospital referred Isaac immediately to CAMHS (Child and Adolescent Mental Health Services) and he was then put on anti-psychotic medication. “It didn’t help– in fact it seemed to make him more manic. From that point on, he stopped talking to anyone other than his mum and sister and just remained in his room, coming down at night to eat.

“His mum and I don’t live together so I would pick him and his sister up on a Friday night and drop them both back off on a Monday morning, but during that time I would never see his face or have any communication with him because he would always be wrapped in a big blanket that covered his head, and he would run straight to his bedroom and slam the door, remaining there the whole time.

Sometimes he was calm but at other times he became very distressed and would be crying, shouting and making strange noises. He couldn’t bear being around anyone, so if we tried to give him a hug or just sit with him, he would run away, or have a panic attack. Consequently, his mum and I decided that as long as he had food, drink and he was warm we just had to leave him in his room.”

In November 2020, nine months after he first became unwell, Isaac’s mum called Mark and said she knew what was wrong. “She had found an article online about a child like Isaac who had had a sudden breakdown and became psychotic overnight, and in the comments someone said it sounded like PANS or PANDAS. We started looking into PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Neuropsychiatric Disorders Associated with Streptococcal Infections), which are neuropsychiatric conditions caused by an abnormal immune and/or inflammatory response to infection, causing a range of physical and mental health symptoms, and we were convinced this was what Isaac had.

“We contacted the charity PANS PANDAS UK who told us about its Facebook group, and suddenly this whole world opened up to us of hundreds of other families who had gone or were going through the same thing as us.”

Mark discovered there was a specialist at Birmingham Children’s Hospital who was treating children with PANS and PANDAS. “We went to see him in early 2021 and he gave Isaac a diagnosis of probable PANS or PANDAS. As there are still no clinical NHS guidelines of diagnosis criteria, he had to include the word ‘probable’, but seemed confident this was what Isaac had. It was such a relief, as we felt like we had finally found some answers. We suddenly had a diagnosis, a community and a charity we could reach out to and get help from, which was huge for us.”

Isaac was switched from anti-psychotics to treatment for PANS/PANDAS – bursts of antibiotics and anti-inflammatories to treat the infection and inflammation. “Although we never got him anywhere near to his normal pre-illness self, with the treatment bursts we saw huge positive changes and within minutes of even taking one ibuprofen we would see an improvement. It was incredible. He would be calmer, his body language would be different, and he could cope better with being communicated with.”

Unfortunately, about a year into this treatment the BPNA (British Paediatric Neurological Association) changed their guidelines. “They said they didn’t feel it was appropriate to give children with PANS/PANDAS antibiotics, so it became very difficult to obtain the treatment. Then in April 2022, Isaac went to Birmingham Children’s Hospital for 16 days for some tests, but they removed his PANS/PANDAS diagnosis and took him off his medication overnight. He had a complete breakdown and lived in the corner of the room naked without food for ten days because he was so distressed.”

Due to this experience, Isaac has refused treatment ever since. “He’s been largely stuck for the last three-and-a-half years. For five years he didn’t dress, didn’t leave the house and didn’t wash at all – he was filthy, and his hair was long and matted. He has also now missed nearly six years of school. However, in the last year he has started slowly coming back to us, which we think may be partly helped by a diet low in inflammatory foods.

“He is not distressed now, and since Easter 2025 he has started to shower and dress again every day and go out on his bike and with his sister. He also does online education twice a week and has become an expert in things that interest him, like history, philosophy, politics and law. However, he still struggles with lots of things. He also stopped visiting me around the time of his PANS/PANDAS diagnosis and he has not been able to see me or any of his family and friends yet apart from his mum and sister, so I haven’t seen his face or given him a hug in nearly six years, which is really hard. He says this will change in the future, but it’s difficult to know what that means.”

Hearing about the recovery of other children with Isaac’s condition through PANS PANDAS UK’s online support groups has helped to keep him positive. “There are a lot of families I’ve met and heard of where the children improved and are now doing really well, so that’s incredibly positive and inspirational.

“Just being able to talk with other people who know what we’re going through has also kept me going. Vicky – the charity’s CEO – has been incredible and I think I spoke to her every single day during Isaac’s disastrous stay in hospital. As a parent you can feel like you’re losing your mind, as you’ve got a child that’s so sick and distressed but the doctors are making you doubt yourself, so being able to talk to someone who has been through it and understands, and the relief and validation that provides, is immeasurable.”

THE CANDIS BIG GIVE FUNDRAISING TARGET: £30,000

• PANS PANDAS UK push for change, provide support and aim to make a difference to the way PANS and PANDAS are understood by the medical profession and the general public.
• PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Neuropsychiatric Disorders Associated with Streptococcal Infections) are neuropsychiatric conditions caused by an abnormal immune and/or inflammatory response to infection, causing a range of physical and mental health symptoms that come on suddenly, including OCD, tics, eating restrictions, anxiety, behavioural and educational regression, insomnia, enuresis and motor or sensory abnormalities. PANDAS is caused by strep infection, but PANS can be caused by any illness and can affect adults.
• The conditions can be very hard to live with and there is a lot of scepticism among medical professionals that the conditions actually exist.
• The money raised in the Candis Big Give will help the charity to provide families with more information in various formats, including converting the webinars from its virtual conference into easy-to-read accessible resources.
• The charity will also use the money to launch a dedicated email support line.
• Visit panspandasuk.org