To raise awareness about Infantile Spasms

[NCforIS]

I've NC as my baby had been diagnosed with this BUT I really want to raise awareness.

Infantile spasms are a really rare form infant epilepsy. They are considered to be catastrophic due to the developmental issues they can cause.
They are rarely seen by medical professionals who sometimes mistake them for reflux or normal Moro reflex.

The UK IS fb page group has bravely put together an amazing video of their children showing what to look out for if you fear you child has developed this.

Please watch and share so that early intervention is possible for these poor babies.

If you suspect IS please go to A&E with a video and say you suspect IS. Be prepared to be admitted for a few days and don't leave without an EEG.

m.youtube.com/watch?v=PoWjBspeoQM&sns=fb

I'm bumping this as I am going through this myself with my newborn.

EEG is Tuesday and I am so scared but I need answers.

Bumping, took my little one to A&E a few days ago. Thankfully EEG clear, doctors were great.

Awareness is so important.

Well this has been a bit of a revelation. My son often had what I thought was a very over reactive Moro reflex, and occasionally had what I thought may be seizures but were over so quickly that I never managed to video them. He didn't have what I've seen in the videos, a cluster of spasms, but it was more occasional, maybe once a month or so. When I asked the health visitor she said she didn't know if it was seizures or not, probably just a reflex. We started the autism diagnosis route when he was 2, and had had a few absence type seizures, the paediatrician said it was too infrequent to worry about. He is now nearly seven with severe autism and severe learning disabilities, he's completely non-verbal and has the mental age of under 12 months. This is really making me question if he had did actually have infantile spasms, and feel very guilty for not pushing for more investigation. Or perhaps he didn't and he would have the same issues anyway. My second son had nothing like this. Thank you for sharing, I had no idea about infantile spasms but will make sure to share with others.