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On August 9 they were admitted to Novant Health Hemby Children's Hospital, where Jackson was born just seven weeks prior. The pediatric neurologist on that day happened to be near the ER and came to their room immediately to view the videos. Jackson also had another episode in the ER room. The neurologist told them it didn't look good, and he needed to be admitted for testing. He was moved upstairs to a room and attached to the EEG machine for the first time. He had another seizure on the EEG machine. Then they took him down to do a brain MRI. Mom and dad were told they wouldn't get results until the next morning. It was a sleepless night, to say the least. Then on the morning of Saturday, August 10, the neurologist came in to let the family know what the results showed. August 10 will always be known as their D-Day (diagnosis day) when all of their lives changed forever. The seizures and findings from the MRI showed that Jackson likely had a rare genetic disorder called Tuberous Sclerosis Complex (TSC) as well as epilepsy. No one in the family had ever heard of this disorder. Mom and dad were shocked and grief-ridden, but they had hope. They had an answer, so couldn't the doctors just give them the medication or treatment they needed to fix it and go home? They wish it was that simple.
Jackson's journey with TSC began when benign tumors (or tubers) were found in his brain causing the onset of seizures. A tumor was also found on the back of his left eye, skin lesions called cephalic fibrous plaque have developed on his face/neck and he has ash leaf spots all over his body (the birthmarks found when he was born are also caused by TSC), he faces challenges with the enamel on his teeth and is prone to discoloration and dental pits, and he has cysts on his kidneys and spleen. He has also been diagnosed with epilepsy and global development delay. Jackson's genetic testing showed that he has TSC2, a spontaneous mutation in Chromosome 16 that causes a malfunction in the gene that provides instructions for producing a protein called tuberin, which stops the overgrowth of cells or suppresses the development of tumors. Mom and dad were also tested in case they had passed the gene mutation onto Jackson, but they both came back negative. While there is a 50% chance of passing this on, more than two-thirds of all TSC cases are spontaneous mutations.
Since Jackson was born, he has endured numerous ER visits and hospitalizations, 15 EEGs, multiple MRIs, and other tests like CT scans, PET scans, and dozens of specialist visits. He takes several strong anti-seizure medications that have helped with his seizures for brief periods of time, but they always come back. He does weekly physical therapy, occupational therapy, and speech therapy but has still been diagnosed with global development delay and is evaluated as more like a 6 to 9-month-old than a 16 almost 17 month old. The family was at a point this summer, where it was time to discuss brain surgery to remove the tubers (tumors) that are causing Jackson's seizures. Mom and dad pursued Dr. Howard Weiner and Dr. Daniel Curry at Texas Children's Hospital, known as the leading pediatric neurosurgeons for TSC patients. They brought Jackson to Houston for 2.5 weeks in September and October for presurgical evaluation to determine if he was a candidate. The tests revealed that he has three active tumors possibly causing seizures, and he is, in fact, a candidate for surgery.
This is not a simple surgery, and it is not a fix for Jackson. It is not done in one day, rather he will be connected to a Stereo EEG for up to two weeks, which is an EEG with electrodes implanted directly on the brain (this is a surgery in itself), and then once they collect more precise data about his seizures, they will determine if he needs a laser surgery to deaden the tumor, a resection surgery via a craniotomy to remove the tumor tissue, or both. This may be multiple surgeries in multiple locations on the brain, but the family will not know until they are there and hooked up to the Stereo EEG. The goal of the surgery is to reduce (or hopefully stop) seizures and to help his development progress. It is not a cure for TSC, and there is a possibility of seizures starting back again from other tumors in his brain. But there is hope that this surgery can majorly change the trajectory of Jackson's development and life.
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