Mum Films Daughter's Seizures To Alert Parents About 'Infantile Spasms', A Rare Form Of Epilepsy

'It has been the scariest week of our lives.'

A mum filmed her daughter having seizures to alert other parents how to detect a rare form of childhood epilepsy.

Belen Sullivan Robbins said her daughter, Bella, has been recently diagnosed with "infantile spasms", a rare condition effecting children aged 4-9 months. 

"We've decided to put together our experience with it in the hope it may help other families in the future."

In the video, Robbin's daughter Bella can be seen having spasms where her eyes roll to the back of her head. 

Robbins explained these often lead to neurological impairment and disability, but if caught early can have a much more positive outcome. 

"Early detection and treatment are the two pivotal factors so the sooner it's caught and halted, the better," she wrote.

"Bella was on steroid medication less than 24 hours after her first spasm.

"The signs can be really subtle, can look like a twitch, a head nod or just a brief eye roll and they tend to happen in clusters.

"As they often happen coming in or out of sleep, they can be easily dismissed."

Open Image Modal
Facebook

Robbins said although Bella's first spasms "didn't seem like much", she called 999 straight away.

After spending time in A&E, Bella was put on steroids. 

"We don't really know what the next few months or years look like, but if Bella is successfully weaned off the steroids, she may continue to hit her milestones, maybe a little delayed due to the treatment, and go to grow up never knowing anything of this horrendous time," Robbins wrote.

"We can't help but feel there needs to be more awareness of something where the prognosis is so dependant on early detection and treatment - so share away and we'll keep you updated on how little Bells is doing."

Ley Sander, medical director at Epilepsy Society and professor of neurology at University College London, told The Huffington Post UK: "Infantile spasms usually appear in the first year of life and are most often resistant to conventional anti-epileptic drugs.

"Bella’s case illustrates two things," he continued. "Firstly, if your instinct is that something is wrong, that the twitches you are seeing in your baby are not normal, seek medical advice.

"Secondly, and this is really important, video the spasms with your mobile phone. The mobile phone that we all carry around in our pockets is one of the most powerful tools in accelerating diagnosis.

"People rarely have seizures when they are with their neurologist, GP or healthcare professional, and the same is true of babies. So often we have to rely on witness accounts but if you are able to video any spasms or seizure activity, this really helps us to guide diagnosis and treatment."

For more information on infantile spasms or to address any concerns, call Epilepsy Society’s confidential helpline on 01494 601400. 

Before You Go

Retro Baby Names Making A Comeback
Aurelia(01 of08)
Open Image Modal
Aurelia is the female form of the Roman classic Aurelius and was (unsurprisingly) most popular during the Roman Empire. The beautiful name is pronounced “Aw-REEL-ya” and means “the golden one.” According to Nameberry, Aurelia was one of the fastest-rising baby names in 2013 and in the following year, it broke the U.S. top 1,000 list to sit at number 832. (credit:Blend Images - Mike Kemp via Getty Images)
Emmett(02 of08)
Open Image Modal
While the name Emmett is on rise for both genders in 2016, it’s actually starting to gain more popularity among girls. Emma and Emily have always been longtime favourites among parents, Emmett is a rare alternative with a fresh sound. While the name does seem masculine, Nameberry points out that some parents have added an “e” to the end to give the moniker a more feminine look and feel.The name originally peaked in popularity in the 1880s, but has gained a lot of attention in recent years. In 2014, Emmett was number 156 for boys, likely due to the craze of the “Twilight” series which featured a character with the same name. (credit:Thomas Northcut via Getty Images)
Ruby(03 of08)
Open Image Modal
The name Ruby is very much a part of pop culture, which is likely why it’s experiencing a boost in popularity. Not only is the name found in music, such as the Rolling Stones’ song “Ruby Tuesday,” but also in film characters, such as Ruby (Renée Zellweger) in “Cold Mountain.” Ruby was highly popular between 1900 and 1936. During that time, the name was consistently in the top 50 list for girls. In 2013, Ruby finally cracked back into the top 100 list and the following year, sat at number 90. (credit:Tara Moore via Getty Images)
Felix(04 of08)
Open Image Modal
The name Felix can be dated back to the Bible, but the moniker didn’t hit its peak in popularity until 1910. Although the moniker has fallen off the charts since then, it’s quickly making a comeback thanks to its “x” ending, which gives it its cool factor. Felix, which means “happy and fortunate,” was number 267 for boys in 2014. (credit:Camille Tokerud via Getty Images)
June(05 of08)
Open Image Modal
June is one of those names that seem more popular than it really is. In the 1920s, this moniker was incredibly common, but its popularity has died down quite a bit since then. June only cracked the top 1,000 again in 2008 and in 2014, it was number 317 for girls. Today, the moniker is gaining popularity among boys as well, since it is a variation of the Latin name Junius, meaning “born in June.” (credit:Peter Dazeley via Getty Images)
August(06 of08)
Open Image Modal
Surprisingly, August was one of the top 100 U.S. baby names in the 1800s. Today, it’s gaining popularity among boys and girls because it’s unique without being too over-the-top. In 2014, the moniker sat at number 242 on the top U.S. baby name list for boys. Additionally, many celebrities such as Charlize Theron, Garth Brooks and Mariska Hargitay have kids with the name August, which only adds to the moniker’s recent popularity. (credit:Noah Clayton via Getty Images)
Hazel(07 of08)
Open Image Modal
This trendy, old school name is making a comeback thanks to celebrities and pop culture. Back in 2004, Julia Roberts named one of her twins Hazel and in 2014, Emily Blunt and John Krasinski chose the same name for their daughter. The moniker also gained even more traction in 2014 after the YA novel “The Fault in Our Stars” was turned into a movie, since Hazel is the name of the book’s heroine. Hazel was highly popular in the late 1800s and early 1900s. Although it began to dip in the charts starting in the 1950s and onwards, the rise of nature names has also added to its sudden boost in popularity. (credit:Camille Tokerud via Getty Images)
Ava(08 of08)
Open Image Modal
Ava is a prime example of how retro baby names can make a successful comeback. Believe it or not, Ava is an ancient name. The moniker was actually first popularized back in 845 (yes, you read that right!) by St. Ava, a woman who was cured of blindness and became a nun. Since then, the moniker’s popularity has tapered off, only to begin rising again in the late '90s. In the past few years, Ava has managed to remain on the top 10 baby name list for girls. (credit:sot via Getty Images)