June 27, 2008

Well, I wasn't able to post a soon as I had originally thought, but go figure! It's not like I have anything going on at my house!!! We have offically up Kenzie's dose of Lamictal to 20mg a day! I am seeing a difference with her seizures. She is averaging about 10 a day. She is also more sleepy than usual. I have to admit, it's nice that we sleep in until 9am now! I know I will have to get her on a better schedule once summer school starts. I am waiting to here from her neuro to see when we are going to start lowering her Depakene.

The genetics appt went really well. Dr. Tifft had a few other things she wants to test Kenzie for, I honestly can't remember what the test where for. By the end of the appt she had said that she did not want to rule out Angelman Syndrome just yet. It's still just a wait and see thing. Also, waiting to see what these other test results say. Although, she was very interested in the fact that Kenzie has a new type of seizure! I had brought up to her, what if the fact is Kenzie has Epilepsy and that's her dx?! That she may have been having seizures all along and we never picked up on it until she had her first big seizure. She did agree with that thought as well. I also mentioned to her about the EEG pattern and told her who read the EEG. Dr. Tifft said that if the doctor who read it (she is THE neurologist in reading EEGs) said that her spike and pattern was suggestive of Lennox-Gastaut, chances are Kenzie has Lennox-Gastaut Syndrome. Her neurologist have not given her that dx, saying she is not a classic case?! Not sure what that really means.

Wayne and I really had a neat experience on Thursday (the 19th). We had a conference at the Epilepsy Foundation in Landover about VNS thereapy. When we got there we were the only HOPE mentors there (HOPE is Helping Other People with Epilespy) so we had a chance to talk with the VNS representives. One of the women there was from Johns Hopkins!! I told her about the whole LGS thing and the medicine issue we have been having. I truly just want to get a second opinion. She took our information and I heard from her yesterday. She is trying to get us in with Dr. Kossoff (I was given his name by a family from the Walk for Epilepsy). I am very excited to see what he has to say. So hopefully the next blog will be about our trip to Hopkins!!!