August 13, 2008

The visit to Johns Hopkins was great! We had an appointment with Dr. Eileen Vining and we were very happy with her! Dr. Vining has been practicing for 30 years! She said the course of treatment we are getting at Children's is what she would do. So for the time being to stay at Children's, but when it's time to get on the Ketogentic Diet we should come back to Hopkins. Dr. Vining also took a look at her last EEG and said it looked terrible! Kenzie was having seizures the entire time, with the exception of a few seconds rest! Her seizure pattern was characteristic of Lennonx-Gastaut Syndrome, but she is not a classic case. She has 2 of the required symptoms, but in order to be diagnosed with LGS, she has to have all 3 (characteristic EEG, 2 types of seizures and mental retardation). She does not feel at this time Kenzie can be said to have mental retardation. But, Dr. Vining wants her to be part of the new research study called the Epilepsy Phenome/Genome Project. Even though she has no siblings with Epilepsy, she does have some of the LGS symptoms. If that makes since. So Hopkins should be contacting us to set all of that up. All in all it was nice to have the confirmation from them that the treatment we are receiving from Children's is what Hopkins would do! What made it nice to was, Dr. Vining also knows both Kenzie's neuro and nurse practitioner personally! Dr. Gaillard (Kenzie's neuro at Children's) trained at Hopkins. So I think it went really well.

Kenzie is currently on Lamictal 25mg 2x daily and Depakene 2cc 2x daily. We are weaning her off of the Depakene and hoping to be done with it in 2 weeks. I do have a call in to her Neuro. Her seizure activity has increased. Over the weekend she had 26 a day! Yesterday she had a complex partial just a few seconds and 19 atonic seizures. We were doing so well!!

Friday was a very ugly day! I had a conference for church both Thursday and Friday. I had no cell service. Friday morning I was enjoying the speaker and my name flashed across the screen! I called Wayne, he was on his way to Fairfax Hospital. Kenzie had a seizure at school and hit her head! She end up needing 2 stitches and glue. The doctor in the ER, I was not pleased with. After it was all over I told Wayne how proud I was of him for not punching the doctor in the face!! Kenzie felt every stitch. Every time he went to "sew" her up she would scream at the top of her lungs! It was truly heart wrenching!!! I told Wayne it was as bad as watching her have a really bad seizure!! From now on we will go to Children's for her ER needs! I wish I would have listened to my gut and had them put her to sleep! So Kenzie did not finish her last week of school! I will just stick with her teachers during the school year and no more summer school!!!!

Corey is done with basketball and he had a great season. We are very proud of him! Now he wants to play basketball in the winter, it'll be a stench with wrestling, but we can do it! His school Open House for school is the 27th. He will get his locker and his schedule. He is so excited, and a bit nervous!

Ryan has started football! His positions are middle linebacker and running back! Look out LT! Wayne is the defensive coach this season! His Open House for school is on the 29th! I know he's not excited, but I know I am! Crazy as always around here! But that's just what we do!!