We came down to Emory yesterday to meet with the epileptologist and see if they have more insight about piper's condition. We were told by the neurologist at Erlanger that all of our records, MRIs and EEGs would be sent over for review. When we got here yesterday the doctor had no idea why we were here and did not have the MRI or EEG to study. We are so frustrated with the lack of communication at Erlanger. We would have brought them ourselves but even requesting a copy takes so long that we didn't have time to get them ourselves.
The doctor decided he wanted his own EEG done to study. Apparently he specializes in reading EEGs so that is a good thing. He was very concerned that she is still having 200+ small seizures a day. He admitted us to the er and were admitted to the hospital yesterday evening.this was a huge surprise because we were told this was a consultation visit so we didn't pack a bag or bring anything. Justin went to target last night to get the basics.
They had to draw a lot of blood because they are doing every test possible. Today they will do another EEG and more testing. We will see what they say about the results and go from there.
The main reason why we thought we were coming here is to talk about the ketogenic diet. We were told they work with infants her age but the doctor said otherwise. They are adamant about not starting it until 6 months which is a huge disappoint for us.
We don't know how long we will be here or what the plan will be. The visit is already so much better than our experience at Erlanger so that helps. We will keep you posted.