Back to Johns Hopkins

We met with Dr. Vining at Johns Hopkins again--we figured it made sense to talk to her after our Detroit trip. Whenever you make an appointment for a second (or third, or fourth, etc.) opinion with a doctor they always look at you and ask why you're there and this time Rob and I didn't sit there looking blankly at each other...

We wanted to get an opinion on Evan's case from a different hospital and hear what Dr. Vining's next course of action would be if he were her patient and we wanted to hear her position on the next drug option, the Vagus Nerve Stimulator (VNS), the Ketogenic Diet and Brain Surgery.

That's pretty much every medical option on the table for Evan right now. Dr. Vining doesn't think the VNS is a good option for Evan and doesn't particularly like any of the drug options available after having gone through four without much success. I joked that at this point Rob and I are equally qualified as any neurologist to choose the next drug and she agreed--it's pretty much a crap shoot.

Johns Hopkins has a lot invested in the Ketogenic Diet and although we've been resistant to trying such a radical treatment, it's better than surgery. We already knew Dr. Vining would recommend this and she didn't disappoint our expectations. It looks like we're going to be on their schedule to begin the diet in February but don't have a set date yet. Basically, Evan will be admitted to the hospital for 4 days where they will begin the diet and put him into ketosis. We will be trained on how to administer the diet too. This is basically the Atkins on steroids--no sugar, no starch, heavy protein and all food items must be measured to make sure Evan eats exactly the correct amount per day. The portions are small so he won't like it and chocolate will no longer be a part of his daily routine--I don't know how we'll reward him for using the potty!!

So that brings me to surgery--none of the doctors are thrilled about surgery but all admit we may likely end up there. Everyone is hoping something will work that will keep us out of the offices of Neurosurgeons. That's pretty much the gist of the appointment--in cliff notes.