Can you support CaringBridge during our fall giving campaign? Generous donors like you ensure that CaringBridge remains ad-free, private and protected.
Ryan Ogden’s Surgery
Apr 2, 2019
Hi family and friends! We are using this site to keep you all updated with the latest information on Ryan’s surgery and recovery. NO need to click a button or type anything; just asking for prayers for a successful surgery and for you to send happy “pizza and football” thoughts Ryan’s way. We appreciate your prayers and love for Ryan. ❤️ As you know, Ryans’s genetic condition, Dup 15q syndrome, is associated with epilepsy (along with many other things..) as over half of the individuals with Dup 15q have seizures. Although we thought Ryan would beat the odds and sail though life seizure-free, puberty hit in 2016 and so did his first seizure. His seizures were managed through medication until April 2018. A year ago Ryan’s seizure frequency increased, the types of seizures changed, and he started to become physically unbalanced. He developed atonic seizures, also called drop attacks, where he literally falls down with no warning. He averages 6 drop attacks a day and his adorable pooch Cooper races to his rescue. After several trips to the ER, chipped teeth, and several sets of staples in his head, one of the awesome teachers at Super School (Shout out, Estefania!) assisted us through the process of hooking Ryan up with an awesome Miami Dolphin’s helmet. Medical headgear can look pretty cool! This has saved us hundreds (literally... do the math...) of more trips to the hospital, not to mention a tiny amount of peace of mind, if you could call it that. Ryan’s neurologist that he had seen since he was 6 months old referred him to his colleague at Nicklaus Children’s Hospital in the 3-0-5, aka Miami Children’s, Dr. Miller. Yep, that is quite a hike for this 9-5-4 family but worth it. At our initial appointment with Dr. Miller in October 2018, he said Ryan’s rapid generalized, medicine-resistant seizures can be associated with Lennox-Gastaut Syndrome (LGS). Ryan had a week long neurological study in January 2019 which confirmed that his seizures have no focal point, cannot be controlled by medicine, and surgery could stop the drop attack seizures with a 5% chance of stopping all other seizures. At this point we are ready to say good-bye to the atonics. Ryan’s surgery is called a corpus callosotomy where Dr Ragheb, Director of Pediatric Neurosurgery Department, will cut his corpus callosum. And now here we are...