Today we spent most of the day at Johns Hopkins Hospital. We met with Dr. Vining and had Rob's sister, Mary, meet us there to be in charge of baby wrangling while Aria spent the day playing with Bella at Rob & Helene's house. We truly are very fortunate to have so many people in our network of friends and family who are willing to help us while we go to all these appointments.
The trip to Johns Hopkins was not exactly what we expected. We thought everything would become more clear after meeting with them and that was definitely not the case. Dr. Vining seems wonderful and she was very informative, but noncommittal. I think basically the MRIs and EEGs are not recent enough and she wants to see the results from those before she recommends further, more involved testing. She also talked about possibly trying the Ketogenic Diet first to see if he has success with that--I hate the idea of trying to do this diet, but it has been very successful for a lot of people so there must be something to it.
Dr. Vining also said she agreed with Dr. Young's opinion of following two separate courses of action simultaneously: try to control the seizures (occurring every 2-3 days) with medication, while having additional testing done that could ultimately lead to surgery. She suggested choosing one epilepsy center to work with if and when we get to the point of intensive testing because each center would redo these tests prior to any surgical considerations. So that leads us back to the idea of figuring out who we would want to perform a surgery we haven't yet decided or been recommended to have done. It's all very circular thinking.
The surgeons at Johns Hopkins who do this type of surgery are Dr. Ben Carson (who basically walks on water in the neurology world) and Dr. George Jallo.
In a couple weeks we will be meeting with Dr. Derek Bruce, a neurosurgeon at Children's Hospital in DC. He is also supposed to be excellent.
So, I guess if surgery is the way we go, these are the three surgeons we are currently looking at, but like I said, nothing is definite, nothing determined. Hopefully as we continue with testing, we'll figure out what is the best decision.