Frankie's Story

Frankie was adopted at 5 1/2 years old.  He is an amazing child.  He was home for about 8 months when he had his first seizure.  Then, he was diagnosed with Epilepsy.  We went to many Dr's and tried many different medications.  We discovered NYU.  The Dr's and staff there have been amazing.  Frankie was evaluated to see if he was a surgical candidate.  Well, he is.  We are meeting with the neurosurgeon in September.  They plan on doing an invasive EEG (EEG leads placed directly on his brain) and then weaning his meds to allow him to have seizures.  They will then determine which areas are causing the seizures.  If the area is a safe area to remove they will remove that epileptic area of his brain.  They do not think in Frankie's case this will be a cure but, they do hope it will significantly reduce his seizures so he wont require so much medication.  It is a 3 step surgery.  He will go have the leads placed on his brain then brought back to the Pediatric ICU and wait for seizures to occur.  He will then go back to the OR for a resection (if it can be done) then they will replace the EEG leads.  He will return to the Pediatric ICU again and wait to see if he has seizures.  He will then be brought back to the OR to refine the resection and close his head up.  The poor kid will be put through a lot.  We trust these Doctors and staff so we hope this is the right thing to do!!!

Calling Dr. Frankie!!!!

Frankie putting an IV into the Teddy Bear's arm with the Child Life Therapist. 

April EEG at NYU

April EEG at NYU to evaluate Frankie for surgery. Frankie made a pair of glasses out of Bendaroos!!!

Tuberous Sclerosis Surgery

This is the surgeon that will be performing Frankie's surgery.  Frankie does not have Tuberous Sclerosis but, the first step of the surgery is the same.  Instead of removing tumors they will be removing epileptic areas of the brain to hopefully decrease the amount of seizures he has.