A mother shares her baby's video with spasms to raise awareness about West Syndrome

When our children are babies, it is sometimes difficult to realize when they have any symptoms or signs of a disease, because being so small there are not really many movements that can be done to compare them with the normal development of a healthy baby.

That's why a mother in England decided to share the video of her 10 month old baby suffering from infantile spasms, a kind of childhood epilepsy, to warn other parents and at the same time raise awareness about the rare disease that was recently detected.

What is West Syndrome?

West syndrome or infantile spasm syndrome is a serious and rare childhood epileptic encephalopathy, characterized by three elements: epileptic spasms, retardation of psychomotor development and hipsarrhythmia in the electroencephalogram, although one of these may be absent.

This condition occurs approximately in 1 in 4,000 to 6,000 babies and predominates in the male sex. Children with West syndrome usually manifest the condition between 3 and 7 months old, although there have been cases in which it appears until after 2 years. Although there have been advances in its treatment, there have been cases in which it is not detected in time, especially when the symptoms are mild, since seizures can be confused with hiccups, cramps or abdominal pain.

Olivia's case

Olivia, a 10-month-old baby was diagnosed in November of last year with a rare disease of childhood spasms. "We were with the doctor because Olivia had a nail infection. The doctor had taken her temperature and was checking her while she was there, happy and smiling, when suddenly he raised both arms in the air"said Olivia's mother, Jade Bamber.

The doctor asked Olivia's parents if this was normal and they told her it happened occasionally. "Right after that the baby's eyes went blank and she started to turn blue, then the alarms rang and staff came running to give her oxygen," Jade added.

Olivia, who had already been diagnosed by other doctors as a "nervous" baby, was unconscious for 6 minutes and remained unanswered for about 38 minutes, so she was immediately taken to the hospital.

His mother noticed that after that episode he had developed a kind of tic in which his arms were raised again and again, so the doctors asked him to record it to see what Jade meant.

When they watched the video they knew immediately that it was childish spasms. They made a series of brain scans to Olivia and she was immediately diagnosed with that condition and given medications to treat her.

Rolling your eyes, having facial contractions and spasms in your arms are some of the things that happen to Olivia when she is given these episodes. Every time your arms are raised or your eyes are blank it is defined as an episode. Olivia can have between 20 and 30 of them in 3 minutes.

"This condition can do a lot of damage to the brain, that's why It is important that babies be diagnosed as soon as possible. One in five children with this disease may have a normal life, but others may end up with worse epiletic seizures or brain damage. I have decided to share this video because many parents might be witnessing an episode of childhood spasms and not knowing it. It is common to be confused with reflux or hiccups and even be misdiagnosed with another disease, as there is not much information about it"adds Olivia's mother.

A case in Spain: Hugo

In Spain there is the case of Hugo, a child who was diagnosed with West syndrome when he was four months old. The first time his parents noticed something out of the ordinary was when Hugo was three months old, one day upon waking he extended and brought his arms forward. They did not give much importance to him thinking that it was a signal to be taken in his arms, but the next day he did the same thing repeatedly while his mother was breastfeeding.

After several tests and some medications, he had an electroencephalogram and it was there when he was diagnosed with West Syndrome. Since then Hugo started with physiotherapists and stimulators in the pool to help you coordinate arms and legs, and maintain balance. At 12 months of age he was not yet able to stay seated or get up, but thanks to the therapies his evolution was fast and good, managing to walk at 18 months.

According to an interview with his parents in 2012, at six years his progress was not so agile, he knew how to climb stairs with the help of his parents, run in his own way and learned to jump. The only word he could say was "mom" and he used it interchangeably to call his father, which is also one of the greatest communication problems About this disease

The feeding process of Hugo has not been simple either, since he only wanted to eat certain things and they should be very chopped, which made his growth curve negative. Little by little he began to try other things and managing to weigh 21 kilos and measure 112 centimeters at six years.

In the case of Hugo, the medications must be changed every month or two months, since his body becomes accustomed to them and does not react, so in addition to the drugs, his parents have tried different therapies and stimulation methods since he was a baby and they have served him a lot in his development, but his favorites are the pool therapy and the music therapy.