April 21, 2022 "Duke and UNC appointments"

We had two appointments today: Duke Neuro-ophthalmology and UNC Pediatric Neurology. 

Dr. Mays El-Dairi, Duke Neuro-ophthalmology, noted some thickening in Rayden's optic nerves. Of course, this was cause for concern, especially after his recent seizures. She started to schedule an MRI, but I told her Rayden was actually seeing his neurologist this afternoon. She was relieved, stating she was sending the neurologist a message about possible shunt failure and she still wanted to see in back in two weeks. Although she noted Rayden's difficulty with depth perception and peripheral vision, she stated no corrective lenses at this time. She reviewed his Formal Visual Assessment results and was thrilled to hear that Rayden is receiving vision therapy at school for his cortical visual impairment. 

Our appointment with Dr. Carolyn Zook Lewis, UNC Pediatric Neurologist, was after lunch. She spent lots of time with us reviewing his history, recent seizure activity, and safety measures. She agreed that a seizure detecting service dog would be a great asset but they are hard to get, and very expensive. 

She introduced the Embrace 2 seizure watch as a better alternative. She said Rayden would be an excellent candidate for it, especially due to his nocturnal seizures. It is a watch type band that detects seizure activity and sends a blue tooth signal to a cell phone that must be with him at all times. The phone will then send an alert message and phone call to all caregivers assigned in the app. Seeing as how Rayden is now sleeping in our bed because we are afraid for him to be alone, we agreed this would be a life changer for us. Dr. Lewis quickly got the ball rolling, writing the prescription and filing the needed paperwork/application for the watch. 

She is hoping this new dosage will do the trick because we are almost at the maximum dosage of his Oxcarbazipine. This means he will need a new medication if he has more seizures. We definitely don't want to change medications because you never know how it will affect you.

She 'translated' the EEG results from last week stating simply 'Rayden has developmental delays'. They couldn't really see the exact cause of his seizures. After putting the email from Dr. El-Dairi together with his recent seizures, she also decided to order a 7 layer MRI, which is much more in-depth than he has had in the past. 

Follow up in 6 months.