Mom Sherrie Judd wants parents to know what the reality of infantile spasms looks like.
In a Facebook post that now gone viral, Judd shared a short video of six children having seizures, including her own daughter, Adalind.
“Just under a year ago, our life changed dramatically when Adalind was diagnosed with infantile spasms,” she wrote on the social media site.
Watch Video Here
This past week was also Infantile Spasms Awareness Week, Judd notes, which is one of the reasons she shared the video in the first place
In the footage, children as young as six months are experiencing these seizures, which happen in clusters.
“When Adalind was diagnosed, it was a heartbreaking, scary time,” she tells Global News. “It had just been Infantile Spasms Awareness week in quite a few countries, and I’d never even heard of it … it wasn’t even on my radar, I felt alone.”
“People need to be aware so they can best help their little ones if they find themselves in the same situation. Also, many people shrug off epilepsy as not a big deal, so it’s helpful for more people to have an understanding of what these kids are battling.”
Adalind had her first spasm when she was five months when the family was grocery shopping. Judd’s husband noticed his daughter’s unusual movement, but the family didn’t take it seriously right away.
“At the time I was worried, but probably not as worried as I should be,” she continues. “My son had a temperature induced seizure when he was younger so we thought it was some kind of seizure activity.”
Because it was during the holidays, Judd and her family took their daughter straight to the emergency room, and soon after, Adalind was diagnosed with infantile spasms.
“We feel very thankful for where she is at and we believe her quick diagnosis helped so much.”
According to the Infantile Spasms Project, these spasms are also called epileptic spasms or West syndrome and tend to affect children under the age of two.
“These seizures — termed spasms — are involuntary and usually consist of a brief interruption of behaviour, often with lifting and extension of the arms and bending forward at the waist,” the project notes. “In many cases, this behaviour is accompanied by a rapid and forceful drop of the head. Each cluster typically lasts a few minutes.”
Dr. Tina Go, a pediatric neurologist at SickKids hospital in Toronto and the co-director of the infantile spasm clinic, says there are many conditions that can cause infantile spasms.
“Including brain injury at birth, genetic and metabolic conditions and brain malformations. In some cases, no cause can be found,” she tells Global News. She adds it occurs in two to three babies for every 10,000 born, and tends to be slightly more common in males.
And for any parent who suspects their child is having this type of seizure, Go says to watch out for very specific symptoms.
“A child’s body bends forward or backward suddenly and the arms and legs stiffen. Each spasm lasts about a second but tend to occur in clusters. They also tend to occur around a time of sleep — either as the child is falling asleep or upon awakening from sleep.”
And like Judd, try to capture it on video and send it to your family doctor or pediatrician right away. “Evidence suggests that earlier treatment of infantile spasms may lead to better long-term developmental outcomes.”
Social media reacts
On Facebook, several users shared their own personal stories of their children going through seizures.
“Great video and so important to share. We could easily have missed our little girl’s spasms at five months and written them off as normal jerky baby movement. Even our GP wasn’t worried! Luckily a pediatrician recognized the urgency, sent us to hospital, and the quick response has meant our little girl is thriving and now symptom-free,” user Naomi Flynn wrote.
“This was my angel 17 years ago. I’m sobbing now as I relive the anguish these life robbing seizures bring about. Thank you for bringing it to attention and my heart goes out to each and every parent on the West Syndrome journey.” user Sabine Kloss wrote.
These days Adalind is not in the best scenario in terms of infantile spasms, but she is managing her symptoms.
“Despite seizures, Adalind continues to develop at a slower rate … [but] she is a happy baby, can crawl, sit up on her own and say ‘dad’ and ‘mum’ which is very heartening for us,” Judd says.
She loves music and nursery rhymes, and her parents are in the process of looking into an expensive cannabidiol oil treatment.
“It is illegal here in Australia and we are attempting to do the huge amount of paperwork to go through ‘a special access scheme’ through the government.”
On Thursday, Judd wrapped up Infantile Spasms Awareness Week by sharing a “thank you” to anyone who shared the video. “Now over 16,000 people are aware of what these seizures look like and what to do if they suspect them,” she wrote.
“We think if it helps even one parent’s child, it is worth it.”
Source: Global News article by A. Patel
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