A young boy being treated for rare brain tumours has described the terrifying hallucinations he’s experienced.
Theo Christides says that his living room transformed into a dangerous jungle, while his mum Emma says he became like a “child possessed” during the experience.
Remembering his frightening visions, Theo kicked and screamed at imaginary dangerous animals while at home in West Acton, west London.
He said: “I was very scared, because I thought my parents were animals.”
Theo’s visions came following surgery to remove a cavernoma growing on the left side of his brain. He underwent surgeries in 2015 and 2018 to treat the benign tumours.
The rare tumours are formed of a cluster of abnormal blood vessels which can burst and bleed.
Theo said: “I think I saw snakes, jaguars and spiders as well. I’m a little bit scared of spiders, but I’m not afraid of cats, as I have a cat called Maple, but my mum told me I was attacking her and I can’t remember it.”
Theo’s hallucinations started in April 2019 when he was being weaned off sodium valproate, a medication used to control the seizures he suffered due to the cavernomas.
His helpless parents, finance secretary Emma, 42, and her husband, digital co-ordinator Matthew, 45, had to watch while Theo hallucinated every day for three months.
He missed school due to the issue, and had to be repeatedly hospitalised until his doctors reinstated his medication.
“We went through hell. It was so scary,” Emma said.
“I remember him being at the top of the stairs and I was terrified he was going to jump down. He was doing things without processing fear.
“He would pick my glasses up and throw them, he would hit and kick me and my husband, he would kick my parents. It was so out of character – it just wasn’t him.
“Then he would calm down, burst into tears and cry and cry and then have a very severe headache.
“The hallucinations could have been because of anxiety, according to what we’ve read, but it could also simply have been because of taking the medicine away.”
Theo said: “The spiders weren’t crawling on me, they were coming down from the ceiling and I thought I was in the jungle.
“The jaguars were circling around me, as if they were going to attack.
“Then they saw me and they suddenly decided to attack me and I got very scared.”
Theo was born without any noticeable problems and enjoyed a relatively problem free few years until his life changed on Saturday, November 14, 2015 – a date forever etched into Emma’s mind.
She said: “He woke up very late, which was unusual for him, and was really groggy, with a bad headache, as well as feeling sick.
“He rushed into the toilet and tried to be sick, but his eyes rolled into the back of his head and he collapsed and fell unconscious.”
She added: “I was screaming, calling for my husband, as Theo wasn’t responding. My heart was pounding, I was in total fear.
“The ambulance came really quickly, but it felt like forever.”
Just five at the time, Theo had a seizure in the ambulance on the way to West Middlesex University Hospital in Isleworth, Middlesex, where a CT scan showed he had suffered a bleed on the brain “the size of a golf ball”.
He was immediately transferred to London’s famous Great Ormond Street Hospital for further treatment, including an MRI scan.
By Monday, doctors had diagnosed him with a cavernoma on the right side of his brain, which they removed the following day during an eight-hour operation – cutting open his skull and leaving a large scar across his head.
Saying the wait “felt like forever,” Emma added: “He had to have an operation to save his life, but we were terrified he might die.
“At the time, we had to do what was best to keep him alive.
“We didn’t know anything about what a cavernoma was, but we had to put all our trust into Great Ormond Street.
“Just leaving him in surgery and not knowing if he would wake up – I wouldn’t wish it on anyone.”
Just five days after his first operation, Theo bounced back.
But, by January 2016, further scans showed that Theo had up to eight cavernomas, which resemble raspberries, but doctors were apprehensive to operate on him further.
Life seemed to return to normal, but Emma says the cavernomas were “ticking time bombs in his skull”.
She recalled an incident in April 2017 which would change his life forever, saying: “We were coming back from a weekend visiting friends in Somerset on the train and Theo kept telling me his right leg was numb.
“I thought it had gone to sleep, but he kept complaining about it.
“Then he began losing feeling on his right side and his leg and arm started jerking on the same side.”
As the body weakness and mini-seizures became more frequent, doctors were forced to act and removed the cavernoma causing the symptoms in August 2018 at Great Ormond Street.
While this eight-hour operation was again a success, then aged eight, Theo’s recovery was far more traumatic.
Emma said: “This time, we’d gone down to the recovery unit and he woke up screaming in pain.”
She added: “It was heart wrenching. I’d rather it had been me than him.
“He was also being really sick, had lot of diarrhoea and they weren’t sure if he might have caught a bug.”
Five days later, he was sent home – but unable to keep food down, his worried parents took him back to West Middlesex University Hospital, where he was put on a drip.
“He’s had so many cannulas in his hand, that he’s terrified of needles now,” Emma said. “He was screaming. It was hell for a few months – very traumatic.”
By the time his symptoms were under control a few weeks later, Theo had lost a lot of weight.
Emma continued: “He looked gaunt, you could see his ribs and his clothes were hanging off him.”
But as 2019 dawned, things seemed to be looking up.
Theo was given a wheelchair to help when his body was weak and he was put on two types of seizure medication.
But when he was weaned off one of the drugs in 2019, the resulting hallucinations were catastrophic.
Now back on the medication, his terrifying visions have stopped and Theo – who was recently diagnosed with attention deficit hyperactivity disorder (ADHD) which causes impulsive behaviour and affects concentration – is starting secondary school in September.
After a spell of good health in 2020, his body weakness returned before Christmas – leaving his parents worried for the future.
“Even this weekend, Theo had a headache and my husband and I were looking at each other, worried in case it was more,” Emma said. “I don’t think that fear will ever go away.”
Doctors continue to regularly scan Theo’s brain, and another operation is a very real possibility.
His learning is approximately three years behind for his age group, according to his mum, but his special needs mean he has been able to attend school throughout the pandemic and has a special educational plan.
And with the support of The Cavernoma Society, a charity which has helped him for several years, Emma feels confident the family will cope with whatever lies ahead.
She said: “Theo is an amazing 10-year-old. He just gets on with it, he’s such a little fighter.
“We still have that fear that we don’t know what is yet to come and we have already been through so much as a family.
“It is quite daunting – but The Cavernoma Society has been a massive help.”
Despite his difficulties, Theo has big plans for his future.
He said: “I want to be a scientist or a chiropractor, because my mum’s shoulder is really bad, so I decided to massage her.”
It’s a route his mum supports.
“He does give very good massages!”
For more information on cavernomas, visit cavernomasociety.org.uk