I started Drake with a new Neurologist in Greensboro. I liked his ideas
We are currently planning on heading to UNC for a third opinion for Drake's "episodes". poor little guy is still having a difficult time keeping his feeds down. I'm still not convinced it's not the Kepra for the seizures. After vomiting for 4 1/2 months,almost daily, I thought this week was going to be different. He had gone 5 whole days without getting sick then yesterday he made up for lost time. We have been weaning him of the Kepra to see if this will help (and to see if the seizures come back, even though I'm not sure they ever went away!). We also have an appointment with the GI doc to have another looksie :)
Last month I sent a couple videos of Drake's episodes to four doctors I thought might could be of assistance!!! Thank God for Technology and Thank Shane for the new camera with video, for Christmas!!! (Nice surprise from him and the boys!!!) Any who, three docs responded with in 12 hours and the forth on the following day! What does that tell me? Is this more serious than hey thought? Is there finally a doctors that sees what we see? Is there something that can be done? What ever it is, I have people who are now responding!
Drake's original Neurologist, who moved to OH, called one night to talk for an hour. He spent his own time to answer questions and concerns for our sake. He is the same doctor who gave us the incite about the "Joy" . He feels these are seizures as well and that if UNC doesn't help, we should try John's Hopkins in Baltimore.
We originally had an appointment with UNC in May. Our GSO Neurologist was kind enough to call and get us an appointment for late March.
Here is footage of what I sent the doctors;
Drake Naylor's Episode
Drake Head Drops Scene 2
Drake episode 3
