I am so used to writing about Abe's appts that's almost what I wrote. Michala's appt went good. It's always such a peaceful experience with Dr. Bebin. I am sure that probably sounds weird but those of you that have dealt with doctors and the med changes can relate I am sure. Well she wanted to hear how Michala was doing. She wasn't pleased at all with the new A-tonic seizures that Michala is having or the amount of time they are lasting. I just HATE given her diastat because it knocks her out for days. She wants to wean her from 2 of her seizure meds and add clonopin. She always wants to do the Vagus Nerve Stimulator (VNS). She wants us to check with Michala's oncologist first to make sure she is clear as far as cancer scans go. She can still have chest CTs as usual and a head MRI if the VNS is turned off.
They are going to start working on getting it approved by her insurance. Dr. Bebin wants it placed in Michala's back because when her port for her chemo was removed part of it broke off and is still in Michala. It's the same location where the VNS would be so it increases the risk for infection. Also Michala would not be able to get to it on her back. Do any of the Aicardi girls have theirs in their backs? Dr. Bebin doesn't know of a surgeon in Atlanta that will put it in the back so she wants it done at Children's in Birmingham. Means several trip to Alabama but if it will help Michala we will do it.
We discussed Michala's increasing irritability and aggressiveness. She thinks it's probably the Keppra. Makes sense looking back because when we added Keppra back she got a lot worse. It has helped her seizures though. Maybe once she gets the VNS we can come off the Keppra too.
Thanks so much for your prayers!!!