Wednesday, January 20, 2010

Adventures in Charleston...

We just got home from Charleston, after a whirlwind trip! I will be brief but I wanted to post because we had "good" results at the epilepsy center. Our appointment was set for 9 am, we arrived at 8:15 and were quickly called back! WOO HOO! The doctor she saw is a former president of the American Epilepsy Society, which is awesome. He was very cordial, kind, caring, sympathetic and understanding. AWESOME, again! I had packed in a few hundred pages of records, MRI's and the like. He carefully examined them and then asked a host of questions regarding her birth and all the subsequent diagnosis'. Then he asked if he could borrow a copy of her most recent MRI and left the room. He came back in with the head of the program, the doctor who started the epilepsy center! I recognized him immediately, from research. They reviewed her records and had some disagreements of what had/might be going on with her. They were uncertain about a lot of thing because her seizures don't present with the way her EEG's read, which has been a frustrating thing for me! So they agreed that they want to present her case in front of the seizure conference that they have twice a month at MUSC! SO COOL! Anyway, they agreed that she needed to begin to try another med, Keppra, in addition to the Tegretol. So here we go...down a uncertain road. BUT......we were extremely pleased with our visit. They spent almost two hours with us! They seemed to be very interested in helping us and coming to a consensus on how to treat her seizures. We actually felt like we mattered! Her doctor even gave us his personal cell number in case we had ANY problems! How many doctors do you know that would do that? I sure don't.... I will post more when I get my thoughts about me.. SO HAPPY!


Anonymous said...

Doing the happy dance for you! (Well, figuratively.) Barbara

Cheryl said...

So happy for your family! Yipeeeee!

With love and hope,
We are Nine

Katy said...

SO happy for you guys! We are on Keppra and I've been very happy with its lack of side effects, but I will add this: If you start Keppra and see moodiness then I recommend a B6 vitamin. Keppra can affect B6 levels, which can affect mood! It's not a common problem, but it does happen. Of course, I'm not a doctor, but you know that!

Amy Genn said...

Isn't it great when things like this happen. Gives you a little faith in the Medical establishment.

I have a doctor who gave me his cell. It sure makes you feel special!

Good luck.

The Henrys said...

I'm so very happy for you and Faith. How nice to get treated in such a wonderful way. It always gives me strength when doctors are supportive, kind and understanding. Having great doctors makes everything easier, or so I have found.