Lanier Landing

Many of you have asked when all these staring off/seizure episodes started with Oliver. We started noticing these "events" about 2 1/2 to 3 weeks ago. Sometimes they would last 10 seconds sometimes a minute or so. They never seemed really scary, just weird, compared to Oliver's usual, active self. Our friends in the medical community, that we had mentioned this too, recommended that we video the "events", which we did, and that proved to be tremendously important at UNC.

A more serious "event" happened on Sat. July 17th. That morning we had to wake Oliver up because he was sleeping unusually late. We had lots of trouble waking him up, it seemed like he could not stay awake and at one point his hand trembled a bit. Nothing we did would keep him alert. We were quite concerned so we took Oliver to Medac. At Medac the doc told us that he probably had a virus, he was sleepy and needed rest- let him sleep it off. We heard him some during the night so we couldn't verify that he was well rested. At the time it made a decent amount of sense but, I had a feeling that it didn't totally explain it. After the Medac trip we still noticed the staring "events". It seemed odd but, it never seemed life threatening. Of course in hindsight we see what was happening but, we aren't pediatricians or neurologists so we aren't beating ourselves up about not knowing. I can honestly say we had no idea Oliver would have a rare genetic diagnosis- that was shock.

His seizures/"events" are not the classic, clonic-tonic kind that most people imagine. They are really hard to explain but, the Medac "event" and the one that sent him on the helicopter were more serious, they lasted much longer.

We are so glad that we have gotten him the help he needs and we have a diagnosis. One of the best things is knowing what we are facing and how to handle it. I hope that helps explain some of the story. Sorry we haven't returned all the calls and emails we received but, we hope to get to everyone soon. We are grateful for you!