TUBEROUS SCLEROSIS- Our journey.
February 4 2012-First seizure
February 5 2012-Pediatric appointment
February 6 2012- 2nd, 3rd and 4th seizure. Off to Yale Childrens Hospital emergency department. CAT scan of brain. I felt a piece of my heart die, literally.
February 7 2012- Admitted to Yale. EEG MRI and blood work done. Notified that there were 3 brain tumors called tubers. Two of the tumors were on each side of her brain but there is one that is located in the center and that one is concerning. When it grows it can block the flow of CSF which can lead to encephalitis and possibly death.
February 8 2012- Diagnosis of a rare genetic disease, Tuberous Sclerosis.
to be continued