Infantile spasms! It sounds like something quite gentle, innocuous and all rather insignificant. That was my initial thought when I first read the name of this condition when I Googled Matthew’s symptoms back when he was about eight months old.
Then I began to read, as I read I began to realise that the name was somewhat at odds with the reality, if ever there was a condition that didn’t match its name then this was it.
Infantile spasms, or West Syndrome as it is also known is a rare, and particularly destructive form of epilepsy. It usually presents in young children from around seven months old and shows as a cluster of often tiny movements where the arms, legs and head will push slightly forward, between the movements there is little to suggest what is going on. It is often missed and mistaken for something far less serious so discreet are the symptoms, however for the lack of visible signs it is critical it is identified and treated as urgently as possible.
Our consultant from the hospital used the analogy with Matthew that with each episode it was like the factory reset button being pressed on a computer, his development wiped, hence why it was so important to treat, successfully and quickly.
That there is now an infantile spasms awareness week annually (1st – 7th December) that brings this condition to the fore is so important and gives families a head start in recognising and having the confidence to approach their medical professionals in demanding testing through an EEG and ultimately treatment.
Reality is that it is unlikely that you will encounter a child with infantile spasms such is the rarity, although the statistics landed with us, so it is not impossible so it is best to be aware.
The link below contains more information on infantile spams and videos which show examples of the clusters of seizures, for me, watching them brings back painful memories of seeing Matthew go through the same, the videos of him we took to show doctors I cannot bring myself to watch even now. #ISAW2017