bridget
I really need to find some parents that have a child w/ TS. My daughter was born w/ a large tumor in her heart that was removed when she was 3 days old, since then she now has 3 tubers in her brain and several cyst in her kidneys (even though they said she was too young to have that much of an advanced stage of it, she does). She has been having seziures lately but I cant get her doctors to listen to me. They keep telling me she is having stomach reflux. But she usually turns her head to the left and stares, her right hand may or may not twitch, and she usually blinks and has a silly grin on her face. More often than not, she makes happy noises, like squeals when they happen. Then, less than 30 seconds after the staring, she starts in with chin thrusts. If there are parents out there that have experience w/ the TS please contact me. My husband and I are having a hard time finding people to talk to about this.