By Dan Coles
A tot left ‘possessed’ by OCD, a nervous tic, burning skin and no fingernails and toenails after tonsillitis triggered a rare mystery condition – which his parents eventually diagnosed from the TV.
Childhood sweethearts Lucie and Neil Gilson, both 33, were concerned when they noticed a drastic change in then-one-year-old son Jack’s behaviour in 2017 when he caught tonsillitis while on holiday with sister Lily, five.
Over the following year the tot caught tonsillitis 10 more times and developed OCD, uncontrollable bouts of severe aggression which saw him attack his family, burning skin and a severe tic – before his fingernails and toenails completely fell off.
Lucie, a hospitality assistant, and Neil, a hospitality manager, were at their wits’ end, with doctors telling them the symptoms could be caused by Tourette’s syndrome or an allergy, until he happened by chance to watch a TV programme about PANDAS Syndrome.
The parents, from Ilfarcombe, North Devon, rushed their son to a specialist who diagnosed PANDAS, a neuropsychiatric condition triggered by a misdirected immune response to a streptococcal infection which results in brain inflammation.
After that, all it took was one course of antibiotics and an operation to remove his tonsils and adenoids for Jack, now three, to be completely cured and back to his normal self.
Lucie said: “One moment Jack was our wonderful son, who slotted into our family perfectly, and the next he had become a completely different child.
“He went from our perfect, funny little boy, to someone that at his worst we could barely recognise.
“He was always pale and scared, he looked constantly worried and just touching him would cause him pain.
“He would have uncontrollable tantrums, more severe than we had ever seen.
“He would be rolling around, throwing himself around the room, going completely crazy.
“We stopped enjoying our son. Our daughter would ask us when her brother would be ok again.
“It made me feel like a paranoid mother, constantly taking my son to the doctors.
“People were convinced he had autism, but I didn’t understand how he could change so drastically overnight.”
Neil added: “We stopped being us, it had a huge effect.
“We felt constantly worried about him – we couldn’t enjoy holidays, dinners or family outings because nobody understood what was wrong with him.
“At his worst we couldn’t even dress him, which meant we couldn’t leave the house.
“We got to a point where it felt like there was nothing we could do.
“His anxiety was so bad that he was scared to do anything, he couldn’t leave the house – the most basic things would worry him which ultimately effected his personality.
“His tantrums were the worst we had ever seen, it was like he was possessed but because he couldn’t be touched, we were helpless.”
Jack had been the perfect son until August 2017 when he caught tonsillitis during a holiday to the south of France.
Overnight he became uncontrollably angry but he then seemed better again until November 2017, when he caught tonsillitis a second time and his other strange symptoms returned.
Jack would have severe bouts of OCD when dressing, he developed a severe physical tic where he would roll his head around his shoulders, he would have intense tantrums, his finger and toe nails started falling off and felt he was burning when being touched.
It wasn’t until Neil and Lucie saw a TV interview on ITV’s This Morning with a mum who had dubbed her son evil before realising he was actually suffering from a rare condition called PANDAS Syndrome that the couple realised this could be responsible for Jack’s sudden change.
They got in touch with the same specialist they had seen on TV and within weeks Jack was diagnosed.
After a four-month course of antibiotics and a minor operation, Jack was completely back to normal – and Neil and Lucie had their son back.
Neil said: “When they started talking about PANDAS Syndrome on the TV, we looked at each other, and said ‘that’s exactly like Jack’.
“We immediately called our doctor and got in touch with the specialist, Dr Tim Ubhi, who diagnosed the boy we had just watched.
“We were shocked when he diagnosed our son with the exact same syndrome.”
Lucie added: “Just like when he woke up a different person the year before, suddenly Jack was back to who we always knew he was.
“The symptoms left him, and he became our funny, confident little boy again.
“Whoever the lady who bravely shared her story on television was, she saved our son’s life.”
Lucie and Neil are now making it their mission to tell the world about PANDAS Syndrome and are even raising money to help other parents understand what their kids are going through if they have these same symptoms.
Neil is due to take part in a 24-hour swim in Loch Venachar, Scotland, on June 22 and aims to raise as much as they can, with an end goal to have Pandas become part of every doctors training, at any level, so the syndrome can be detected before causing permanent damage.
Lucie said: “We feel incredibly lucky to see Jack better, and we just want to help other families get the same happy ending we got.”
You can sponsor Neil here: https://wonderful.org/fundraiser/24hourswim-73bf3666 fbclid=IwAR3V69I4ZwwJuWwevSzsjdV47DZlyuNXnsbGCvq5C6EX15GzOvpwqFndAHs