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Tuberous Sclerosis

Patty

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I have an 8 month old daughter who was recently diagnosed with this rare disorder. So far she's only got the white "ash leaf" spots and the seizures. Her CT scan showed "tubers" on both sides of her brain. She will be getting a kidney ultrasound next week to look for tumors or cysts. I'm just wondering if there's anyone else out there who can tell me what they've gone thru. And if they know of any specialists in the SE United States (preferrably FL). I would appreciate any information. Thanks, Patty

 


   
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