Tuberous Sclerosis Complex
MY NAME IS CONNOR.
THIS IS MY STORY.
Connor is 23 months old and needs the option of medical cannabis. At my 30-week ultrasound, rhabdomyomas were spotted on his heart. He was carefully monitored until he was born, but fortunately they never interfered with his heart functioning. Everything went smoothly during delivery, but several hours after his birth he began to have seizures. That, along with the heart, were two major markers of tuberous sclerosis complex, a diagnosis that was later confirmed with a DNA test.
He spent five weeks in the NICU because he didn’t respond well to traditional seizure medications. One of his 48-hour EEGs recorded 82 seizures. We thought we were looking at newborn brain surgery. Eventually the seizures were reduced in number and the doctors felt it was safer to hold off on the brain surgery for a few months. He went home on three medications that had to be administered five times a day. He was still seizing and development was incredibly slow. At four months he underwent brain surgery to remove the tuber on his brain that was causing most of the seizures.
We went about a month seizure free with increased development, but then he developed infantile spasms, which were stopped with vigabatrin, a heavy-duty medication that poses risk to his peripheral vision. He is required to see an eye doctor every three months to obtain the meds. It is the most effective medication of the seven we have tried. He is currently on that and Onfi, which poses the risk of the potentially deadly Steven Johnson’s syndrome.
It has been an up and down road with seizures. Sometimes they seem under control, then we have a day with 50 seizures. We are pursuing our last option in Georgia which is diet therapy. We hope this will get us through to a time when he will have the option of cannabis oil. TSC has no cure, so he will never be safe from seizures. We need every option on the table for this lifelong fight.