Toddler who suffers up to 16 seizures a day has CCTV wired to his cot for parents to monitor him

September 26, 2012 | by | 0 Comments

A toddler with a medical condition so rare he needs to be constantly watched is starring in his family’s own ‘Big Brother’ show after his parents rigged up CCTV to his cot.

Little Ollie Johnson, 17-months, has Dravet Syndrome and can suffer up to 16 seizures in one day which can strike at any time sending his oxygen levels plummeting and putting him at real risk of dying in his sleep.

Loving parents Sarah, 32, and Stephen, 28, Johnson have hardly slept since Ollie was diagnosed afraid he would have an attack in the night.

Ollie Johnson in his cot with mother Sarah, 32, and father Stephen, 28, who monitor him using CCTV

Ollie Johnson in his cot with mother Sarah, 32, and father Stephen, 28, who monitor him using CCTV

But now they say they are living a “real-life Big Brother” after installing two CCTV cameras in their home and kitting out Ollie’s room with James Bond style gadgets which keep him alive.

The cameras in Ollie’s room are linked up to screens in their bedroom and living room so they can always keep a watchful eye on him.

And with the help of charity Dravet Syndrome UK the couple have bought Ollie a special mat which sounds an alarm if he stops breathing.

Brave Ollive also has an oxygen monitor attached to his toe, which sounds an alarm if the oxygen levels in his blood fall too low.

Full-time mother Sarah, who also has her hands full with four-month-old twins Harley and Hayden, said the specialist equipment has given the family a “vital piece of mind.”

The toddler has an incredibly rare illness called Dravet Syndrome which has led to him having 16 seizures in one day

The toddler has an incredibly rare illness called Dravet Syndrome which has led to him having 16 seizures in one day

Ollie plays with some of the complex equipment that is used to keep him alive

Ollie plays with some of the complex equipment that is used to keep him alive

Sarah, who gave up her job with charity Scope to become a full time mother, said: “It is like big brother in the front room now.

“When we are watching TV I am constantly drawn to the screen. It is really comforting to know I can just turn round and see him.

“The equipment is a vital piece of mind. We have got used to the alarm and it sounds so loudly that it always wakes us up.

“We never expected to have CCTV cameras inside our home, but they have now I cannot imagine life without all the equipment.

“We used to panic when Ollie had a seizure. I never wanted to go to sleep in case he had one in his sleep.

Sarah holds her son, who she must monitor every day

Sarah holds her son, who she must monitor every day

The family are living a real life 'Big Brother'

The family are living a real life ‘Big Brother’

Sarah and Stephen with Ollie and his twin brothers Hayden, left, and Harley, right

Sarah and Stephen with Ollie and his twin brothers Hayden, left, and Harley, right

“Ollie has problems sleeping so the cameras allow us to check on him without walking in and disturbing him.”

Ollie, who lives with Sarah and electrician Stephen in Hove, Sussex, was born healthy but suffered a 45 minute-long seizure when he was four-months-old.

Terrified Stephen called an ambulance and Ollie was rushed to the Royal Alexandra Children’s Hospital, Sussex.

But despite carrying out several tests doctors were unable to identify what was wrong with him.

A month later Ollie had another seizure and in April this year he was eventually diagnosed with Dravet Syndrome by genetics specialists.

As soon as they knew the risks involved in the condition Stephen and Sarah rushed out to start assembly his high tech bed.

They bought two CCTV cameras, for about £100 each with one hanging over his cot and another hanging by his wardrobe were bought from eBay.

Ollie also has a #1,000 oxygen saturation monitor, which works by monitoring his heart rate from a specialist company.

If the oxygen levels drop it sounds an alarm.

Ollie’s special mat, which cost around £300, detects a lack of movement and sets off an alarm if he stops breathing and was bought from Argos.

The family have orderEd a seizure mat which will set off an alarm if he thrashes around in his cot – they had to wait for Ollie to be 18 months so he was heavy enough for the technology to work.

Ollie can have three forms of seizures – the most serious tonic clonic seizures, partial focal seizures, and the milder absent seizures which are like a daydream.

In July Ollie had seizures four days in a row, then in November he had a seizure that lasted for more than an hour.

And last Boxing Day the excitement of all his family being around him got too much for him and Ollie had 16 partial focal seizures in one day.

Stephen and Sarah have learnt the triggers that can cause Ollie to have a seizure, which include temperature changes, illness, tiredness and excitement, and try to monitor them.

Now Ollie, who takes Buccal Midazolam and Sodium Valproate at 7am and 7pm every day, has seizures about every fortnight, which last about 20 minutes.

Sarah added: “Ollie is advanced for his age. I spend lots of time reading with him and talking to him.”

Dravet Syndrome is a neurological condition which affects about one in 40,000 children.

It causes severe seizures and can lead to other conditions such as learning disability, ataxia and autism.

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