A mum has shared a heartbreaking video of her baby daughter having a rare epileptic fit as a warning to other parents.
Little 10-month-old Olivia suffers from potentially devastating infantile spasms that can often be mistaken for hiccups or reflux.
***scroll down to watch the video***
The condition is a rare seizure disorder which occurs in young children, usually under the age of one.
Seizure attacks can include head bobbing, arm or leg jerking and eyes rolling in the back of the head.
They can often be very subtle – similar to common disorders like normal startle reflex, colic, or reflux – making it difficult for parents to realise their child has a serious condition.
But IS is a much more serious seizure disorder than the generalised convulsion. It can have catastrophic effects, including brain damage and poor mental development.
Olivia was diagnosed with the condition in November last year.
Here Jade explains how she first realised Olivia had infantile spasms and why she decided to share the video of her seizures online.
“We just happened to be with the doctor at our GP surgery because Olivia had an infection in her fingernail,” 25-year-old Jade told Wales Online .
“The doctor had taken her temperature and checked her over and she was lying there happy and smiling.
“All of a sudden she threw her arms up in the air.
“The doctor asked us if this was normal and I told him that she does it occasionally.
“Just after that, Olivia’s eyes started rolling right back in her head and she turned blue.
Nothing like that had ever happened before and it’s just lucky we were with the doctor when it did.
“The alarms were sounded and people rushed in to give her oxygen.”
Olivia – who had already been described as a ‘jumpy baby’ by development consultants – was unconscious for six minutes and remained unresponsive for around 38 minutes.
She was rushed to hospital, with her distraught mother, her father Matt and six-year-old sister Danni by her side.
“She developed a twitch, but nobody else noticed it except me. It looked like what I could only describe as someone having a stroke.
“The next day, the twitch became more obvious and everyone clicked on to it. Her arms started flying up in the air again – this time, one after the other.
“The doctors kept missing it, so asked me to record it.
“When they watched the video back they knew straight away it was Infantile Spasms.”
Olivia was given a number of brain scans and was officially diagnosed with the condition and given medication to treat it.
“If we hadn’t had been in the doctors that day, we wouldn’t have been so lucky in finding out what was wrong with Olivia,” Jade said.
Some of the common things that happen when Olivia has a seizure, include her eyes rolling to the back of her head, her face twitching and her arms spasming.
“Sometimes it’s just the arms, sometimes she just stares and we can’t get her attention and other times she just stops and then starts to smile again.
“Every time her arms jerk or her eyes roll – it’s classed as a seizure. So in a three minute period she could have up to 20 or 30 seizures.
“It’s really brain damaging and that’s why it’s so important to get your babies diagnosed early.
“One in five children with the condition go on to live a relatively normal life, but others can end up with worse epilepsy or develop mental disabilities and brain damage.
“It’s just heartbreaking that parent’s could be watching their babies having a seizure right in front of them and not even know about it.
“I think a lot of the time parents take their babies to the doctors thinking they have reflux or hiccups – so they’ll often be misdiagnosed and turned away with Gavisgon or something.
“But once you see the seizures you wont forget what they look like.
“That’s why I decided to share the video.
“If any mum’s see it happen to their baby or friends babies or even other babies at nurseries – they’ll be able to recognise what it is.
“Just after Olivia was diagnosed we started to research the condition and it was upsetting how little information there was out there.
“Even some of the paramedics and A&E doctors hadn’t even heard about it before.
“More awareness needs to be raise about this condition, and that’s what I’m trying to do.
“Even though Olivia was very unlucky to have this rare defect in her chromosomes she is also the luckiest baby in the world to have Danni as a big sister.
“She absolutely adores her and she is dealing extremely well with all the attention Olivia gets.”
How to spot if your baby is having an infantile spasm
According to the Epilepsy Foundation, the common characteristics of infantile spasms include:
- Consists of a sudden stiffening of the body, arms and legs and head bends forward.
- Each seizure lasts only a second or two but usually in a series.
- Most common just after waking up and rarely occur during sleep.
- They typically begin between 3 and 8 months of age. Almost all infantile spasms start by 12 months of age and usually stop by 4 years old.
- Steroid therapy and the antiseizure medicine Sabril are the primary treatments.
- Most children have developmental disabilities later in life.
- Many children develop other kinds of epilepsy.
The Epilepsy Action website also adds: “The typical pattern is of a sudden flexion (bending forward) in a tonic (stiffening) fashion of the body, arms and legs.
“Sometimes, the episodes are different, with the arms and legs being flung outwards (these are called ‘extensor’ spasms). Usually, they affect both sides of the body equally.
“Typically, each episode lasts just 1 or 2 seconds, there is then a pause for a few seconds followed by a further spasm.
“While single spasms may happen, infantile spasms usually happen in ‘runs’ or ‘clusters’ of several in a row.
“It is common for babies who have infantile spasms to become irritable and for their development to slow up or even to go backwards until the spasms are controlled. These babies can also behave as if they cannot see. These problems can improve if the spasms can be controlled and the EEG improves.”