Neurology Appointment

Tuesday, February 17, 2009
So today Kennedy had her monthly Neurology appointment. We learned a lot, some good and some not so good. To begin Dr. Michelson was pretty happy that Kennedy's seizures were under control, however, he wants to do whatever he can to find a different medication then phenobarbital to control her seizures. He was explaining that if phenobarbital works to control seizures then there is also another medication that could do just the same. it is just a matter of finding what medication that is. As I have explained before I want Kennedy off the Phenobarb because it just makes her so drugged out and Dr. Michelson wants her off the Phenobarb because it has been proven to cause brain cell lose in lab rats - then why in the world would someone prescribe this medication to an infant?

So we will begin weaning Kennedy off her Phenobarb and Topamax and begin her on Keppra. Great, now we have to go through the withdrawals all over again!! I am really not looking forward to this. Last time we did this Kennedy took it really hard and it was very taxing on Brian and I.

I also found something out which makes so much sense now. Dr. Michelson told us that he does consider Kennedy an Epileptic and that the EEG showed her seizures taking place in her temporal lobe and affecting the hippocampus. This is a part in the brain that plays a major role in memory (mainly short term memory). In Alzheimer's patients this is the part in the brain that is first to be affected. So ultimately every time Kennedy has a seizure she pretty much wipes out her memory. It now finally makes sense!!! I have always said that Kennedy will do things one day - like drink two of her feedings from a bottle, and then the very next day she forgets how to do it completely.

I also asked Dr. Michelson his opinion on Kennedy muscle issue - the fact that she does not move at all (almost as if she were paralyzed). I just wanted to know his honest opinion. I wanted to know am I doing the right thing? Should I be seeing another sort of specialist for this issue? I guess I just needed some reassurance to my actions! He stated that he does not want to give a definitive answer or assumption as to Kennedy's condition until her next MRI/MRS, however, he does not think it looks to good for her. He explained since she did not move much in Utero and the fact that she did not move much once she was off Phenobarb the likelihood that her condition will improve is poor. He explained that most likely whatever is wrong with Kennedy there probably won't be a cure for and she probably won't advance much more then she is know.

It was an appointment full of so much information, however, it was also so damn depressing. Why? Why Kennedy? Why me? I just don't get it. I swear it does not seem like we ever get ahead in this game (if that's what you want to call it). I stay as positive as I can, but it is just super frustrating and very disheartening to go through this day in and day out and never really seem to get ahead.

Anyways, Friday March 13th is the day. Kennedy will have her MRI/MRS at Loma Linda. The following week we have our follow up appointment with Dr. Michelson to find the results of the MRI/MRS. It will tell us if the brain is developing normally (besides the cerebellum). If the myelin generated properly. If her brain is showing signs of atrophy (or degeneration). If she does truly have a Mitochondrial Disease (which can be seen in pictures of the basil ganglia and the brain stem). This test and appointment should really tell us so much more about Kennedy's future.

I will keep you guys updated. Thank you again for all your support - It truly means so much to me :)