Big sis update!

[Guest guest]

I took today for a neurology appt today, and got more help than I could have imagined. I told everybody last week of my concerns with my oldest daughter, . She has been having horrible headaches and tremors. Her energy level has also been a little low lately. Well, anyway her ped referred her to a neurologist at CCF who specializes in headaches. Too my luck he is at the same desk as Dr. Cohen, Gracies mito doc. The residents came in first to ask all there preliminary stuff and then heard of her sisters diagnosis. At that point they decided that needed to see Cohen, not the DR she was scheduled for. At first I was worried, because anyone who goes to Cohen knows how his schedule is. After about 5 min in the room after the residents left, guess who walks in Dr. Cohen. I was so pleased, he took time from his schedule to see . She is far from critical, but still spent a good 1/2 hour with her. He thinks her problems are probably migraines, but is concerned with the energy issue. He decided to set her up with a mri of her brain and ran all the "typical" blood tests for mito. He even put in the labs for co enzyme Q10 levels and the carnitine levels, Grace is very deficient in both of these. I am praying that everything test out OK, but at least we will know. I even got to ask some pressing questions about Grace. We have been worried that she is having some small seizures, so he set her up for an EEG. He is only doing the 30 min one, and then maybe the 24 hour one later. How bad is the EEG? I know its not painful, but Grace is 19 months old and does not like people messing with her. Also, what is the mri like? They are sedating for the procedure, but how long does it take? How long for results? Dr. Cohen told me to call him the day after the MRI, so hopefully he will have results then. Sorry this is long, but just wanted to share.