So far this week it seems Jenelle has returned to some better seizure control. As I last reported, Jenelle's seizures were increasing significantly in duration and I put in a call to UCLA. We decreased her Lamictal dose by half on Monday, October 25 and she is currently taking 20mg a day. In the days that followed that decrease, she continued to have long seizures (her longest being over 5 minutes, with a 30 second break only to go into another 3 minute seizure almost prompting me to use Diastat!) Also, her sleeping habits grew worse in that she pretty much slept in 4 hour intervals. Not fun! Rather than call UCLA again last Friday, I decided to give her the weekend to watch her more carefully. After Friday, it seemed that her seizures decreased and returned to their "normal" duration. This week has been really good and we've seen very few seizures! I will call Dr. Shields on Monday to find out the next step. I hope if she can maintain this control on the reduced dose of Lamictal, we can wean her off either Vigabatrin or Topamax. I'll keep ya'll posted!
Also last week, we received the usual HMO denial letter regarding our request to see Dr. Sutherling in Pasadena for the Ketogenic Diet and Dr. Haas in San Diego for the metabolic testing. It was rather comical - in denying our visit to these doctors, the did however approve a visit to the neurologist she is already seeing! Boy, won't that come in handy! ;) Yesterday I filed an appeal for the Dr. Sutherling denial. I figured I might have better luck fighting for one and not both at the same time. Also there are no other Ketogenic Diet Programs in our area (other than UCLA which is closed to new patients) but there are other metabolic doctors… anyway, we'll know within 30 days. Please send us positive thoughts and prayers that we can get the authorization! Also, I sent her application to Dr. Sutherling's program last Monday, but we have yet to hear from them as well.
The kids are doing well and had a great night on Halloween. Jenelle enjoyed the fresh night air dressed as a bunny, and Jack enjoyed running to each house in his Spiderman costume. At first he just knocked on the door then ran to the next house, until he realized they were giving out candy when they answered the door! He soon got the hang of it. Oh and in case you were curious, we lost 3 fish (Nemo, Mickey and Minnie!) Because there was a 14 day return policy, I was keeping them in the "freezer" so I could return them on the weekend. When the third fish died, I tried to not let Jack see me fish it out of the tank. When he noticed only one fish left in the bowl, he asked me where Mickey was. I told him he had died, and Jack responded, "That's OK Mommy - Is he in the freezer with the Otter Pops?" The dead fish have been replaced with Mickey #2, Goldie (the golden algae eater) and Rainbow Fish #1, #2, #3, #4 and #5 (a school of neons that are too similar to name individually, so Jack just named each of them Rainbow Fish! ;) Too funny!
That is all for now! Thank you for the positive thoughts, prayers and support - we greatly appreciate it!