West Syndrome/Infantile spasms

[Sandhills]

Hi I just wondered if anyone on here had any experience of West Syndrome or Infantile spasms?

my children's half sister was diagnosed with infantile spasms at 6 months. don't know all the story but she was on medication for a year and is now off medication. no fits for 2 years and although a bit slower than her peers to talk/potty train she is developing ok dispite being given an awful prognosis at 6 months. My ex husband and new wife use the yahoo group riven mentioned.