Monday, February 22, 2010

Just a thought...

I keep reading. I can't stop really. I love to absorb everything that I can related to Remy's disease.

His diagnosis is Tuberous Sclerosis Complex, but what got him, what really knocked him down, was infantile spasms (caused by the numerous tubers on his brain). The more I read about infantile spasms, the freakier they sound. They are described as a rare and CATASTROPHIC form of epilepsy.



Call me crazy, but catastrophe, in general, is not welcome in my child's brain.


  1. Yes but complex partal seizures can present in a similar fashion & are not nearly so bad.
    My son has TSC

  2. Hi Ron! He had complex partials as well. I was not nearly as concerned about them. The IS really took it out of him (he had made little to no developmental progress by the age of 9 mos when he had his surgery). How old is your son?