Neuro update

Well, I took Ethan to his neurology appointment on Thursday afternoon. We were there almost two hours. I was pleased with the doctor's bedside manner and how thorough she was.

Because of the possibility of Ethan having seizures, she has ordered a sleep deprived EEG to see if there are any misfirings going on in his brain, and an MRA to rule out Moyamoya disease. If the EEG is clear, then we will likely do an inpatient stay in the epilepsy unit at the hospital so we would press a button if Ethan has an "episode" and then the report from the EEG will line up with any seizure activity (if any).

The lesions on Ethan's brain could be from a number of things, one of which is chemo. There really isn't a way to tell where they came from. They are not a concern unless they continue to change, so I assume we will have routine MRI's annually? I forgot to ask.

Doctor did confirm that Ethan's cerebellum is smaller and has extra fluid. It appears to be a mega cisterna magna. This could be insignificant and it could also be Dandy Walker variant.

There were a couple of other concerns- the amount of hair on Ethan's arms and back, and his lack of muscle mass (even though he is VERY strong). She thinks that he may have a vitamin deficiency because of his feeding issues. We will cover that all with a different doctor though.

Overall, it was a good appointment. I didn't leave freaked out about anything. I look forward to trying to figure out what is going on with Ethan when he has these "episodes". I want to thank my friend, Leah, for being such a great support to me before and after the appointment! Leah's daughter was recently diagnosed with Complex Partial Seizures and her episodes are eerily similar to Ethan's. THANK YOU LEAH!

I will update when we have our EEG and MRA scheduled.