Cole and the Chief of Neurology

Today Jon and I took Cole for a meeting with Dr. Chugani, the Chief of Neurology at Children's Hospital. He does not believe that Cole is having complex seizures (hooray!). His opinion is that his episodes at night are night terrors. I am not convinced of that quite yet.

Here is the new plan for my Mr. Man :)

He is going to be getting a 23 hour EEG. This should show if he is in fact having any kind of seizures. He is also going to be getting a Baer test. From my limited understanding, this tests the nerves in his ears leading to his brain. He has trouble with speech, and he sounds like a deaf person sounds when talking. I apologize if that isn't the politically correct way of describing it.

From there, the doctor wants him to have the same genetic testing that his genetics team wants him to have. The very same testing that our insurance company has denied twice already. Ugh! Tomorrow we will be placing another call to the insurance to see how we can make this work! The test is called a comparative genomic hybridization. This test will detect unbalanced chromosomal changes. The neuro doc mentioned a test called a microarray so we will mention that to Cole's genetics team when we meet with them later this month.

I should know the schedule for his EEG and Baer test within a week or so. Hopefully they can squeeze him in somewhere soon! The nurse told us that they are scheduling 3 weeks out. That isn't horrible, it took us 3 months just to get into see the neurologist today!! Lucy and Cole go back together for their update in October. She also goes next Monday for her MRI.

Once again, thank you all so much for the continued prayers for my sweet babies!