One boy undergoing treatment for rare brain tumors described the terrible hallucinations he had experienced.
Theo Christides says his living room turned into a dangerous jungle while his mother Emma says he became like an “obsessed child” during the experience.
Recalling his frightening visions, Theo kicked and yelled 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 after an operation to remove a cavernoma growing on the left side of his brain. He was operated on in 2015 and 2018 to treat the benign tumors.
The rare tumors are a collection of abnormal blood vessels that can burst and bleed.
Theo said, “I think I saw snakes, jaguars, and spiders too. I’m a little scared of spiders, but I’m not scared of cats since I have a cat named Maple, but my mom told me I was it am. ” Attack you and I can’t remember. “
Theo’s hallucinations began in April 2019 when he was weaned from sodium valproate, a drug used to control the seizures he was having due to the cavernomas.
His helpless parents, finance secretary Emma, 42, and her husband, digital coordinator Matthew, 45, watched Theo hallucinate every day for three months.
Because of the problem, he missed school and had to be hospitalized repeatedly until his doctors reintroduced his medication.
“We went through hell. It was so scary, “said Emma.
“I remember he was at the top of the stairs and I was afraid he would jump down. He did things without fear to process.
“He would pick up my glasses and toss, he would hit and kick me and my husband, he would kick my parents. It was so atypical – it just wasn’t him.
“Then he would calm down, burst into tears and cry and cry and then have a very bad headache.
“The hallucinations could be due to fear from what we’ve read, but it could also be due simply to the drug being taken away.”
Theo said: “The spiders didn’t crawl towards me, they came down from the ceiling and I thought I was in the jungle.
“The jaguars circled around me as if they were attacking.
“Then they saw me and suddenly they decided to attack me and I was very scared.”
Theo was born with no apparent problems and had a relatively problem-free life for a number of years until his life changed on Saturday, November 14, 2015 – a date that forever came to Emma’s mind.
She said, “He woke up very late, which was unusual for him, and was very light-headed, had a severe headache, and felt sick.
“He rushed to the bathroom and tried to get sick, but his eyes rolled into the back of his head and he collapsed and passed out.”
She added: “I screamed and called for my husband because Theo didn’t answer. My heart was pounding, I was totally scared.
“The ambulance came very quickly, but it felt like forever.”
At the time, Theo had just had five seizures in the ambulance on the way to West Middlesex University Hospital in Isleworth, Middlesex, where a CT scan showed he had had a brain hemorrhage “the size of a golf ball”.
He was immediately taken 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 – by cutting open his skull and leaving a large scar over his head.
Emma said the wait felt like forever: “He had to have an operation to save his life, but we were afraid he might die.
“At the time we had to do our best to keep him alive.
“We didn’t know what a cavernome was, but we had to put all our trust in Great Ormond Street.
“Just leave him in surgery and don’t know if he would wake up – I wouldn’t wish anyone else.”
Theo recovered just five days after his first operation.
By January 2016, more scans showed Theo had up to eight cavernomas that resemble raspberries, but doctors were concerned about continuing to operate on him.
Life seemed to be getting back to normal, but Emma says the cavernomes are “time bombs ticking in his skull”.
Recalling an incident in April 2017 that would change his life forever, she said: “We came back from a weekend visiting friends in Somerset on the train and Theo kept telling me his right leg was numb .
“I thought it was asleep, but he kept complaining about it.
“Then he lost feeling on his right side and his leg and arm began to jerk on the same side.”
As the body weakness and mini-seizures became more common, doctors had to act on Great Ormond Street in August 2018 and remove the cavernoma that was causing the symptoms.
While that eight-hour operation was another success, Theo’s recovery at the age of eight was far more traumatic.
Emma said, “This time we went to the rescue unit and he woke up screaming in pain.”
She added, “It was heartbreaking. I would have rather been me than him.
“He was also very sick, had a lot of diarrhea and they weren’t sure if he could have gotten a bug.”
He was sent home five days later – but his worried parents couldn’t keep the food low and took him back to West Middlesex University Hospital, where he was put on a drop.
“He has so many needles in his hand that he’s afraid of needles now,” said Emma. “He screamed. It was hell for a couple of 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 clothes hanging on him.”
But as 2019 hit, things seemed to be getting better.
Theo was given a wheelchair to help when his body was weak and two types of seizure medication.
When he was weaned from one of the drugs in 2019, the hallucinations that resulted were catastrophic.
Now that he’s back on medication, his terrible visions have ceased and Theo – recently diagnosed with attention deficit hyperactivity disorder (ADHD), which causes impulsive behavior and affects concentration – will start secondary school in September.
After a period of good health in 2020, his body weakness returned before Christmas and his parents were worried about the future.
“Even this weekend Theo had a headache and my husband and I looked at each other, worried if it should be more,” said Emma. “I don’t think the fear will ever go away.”
Doctors continue to scan Theo’s brain regularly, and another operation is a very real possibility.
According to his mother, his learning was about three years ago for his age group, but because of his special needs, he was able to attend school throughout the pandemic and has a special education plan.
And with the support of the Cavernoma Society, a charity that has been helping him for several years, Emma is confident that the family can cope with whatever lies ahead.
She said, “Theo is an amazing 10 year old. He just keeps going, he’s such a little fighter.
“We’re still afraid we won’t know what’s to come and we’ve been through so much as a family.
“It’s pretty 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 become a scientist or a chiropractor because my mother’s shoulder is really bad, so I decided to massage it.”
It is a path that his mother supports.
“He gives very good massages!”
For more information on cavernomas, visit cavernomasociety.org.uk