Tuesday, March 31, 2009

These past few weeks have been pretty good considering everything that has been going on. About 2 weeks ago the grandmal seizures started again in her sleep. We had a really good "honeymoon" on this medication for about 2 weeks. We noticed that with this knew medication her ketones were getting higher and higher. We had stopped the MCT oil last month because we were thinking that having her ketones so high might be causing all the problems. Since this medication is so new it has never been tested on the ketogenic diet so we don't know if there is relationship between the two. So we decided to reduce her ratio from 4.5/1 to 3.5/1 , this calculates into a little more "food"-carbs and protein- and a little less fat. We left a couple of days after this change to Southern California to go to my brother's wedding and also go to Disneyland and Sea World. We were nervous because in the past she has gone down hill really fast once the seizures started back up. We figured there are some good hospital in LA if we needed them.
She remained pretty stable for the first part of the trip to sea world. When we got up to Disneyland she got really sick (an aweful flu like bug that my other kids had). This caused some additional seizures during the day that went along with her fever. She was really out of it for a couple of days. Because of the sickness she stopped eating and so her seizures stopped also. Right now she is doing good-no seizures- but still does not feel like eating much. I hope things continue to do well as she eats more, that will be the real tests. I am very happy to have made it on our trip without a hospital visit! This has been the longest she has gone in awhile with out a visit to the hosptial-(everyone knock on wood).

Here are some pictures from our trip



2 comments:

Nancy B. said...

We continue to pray for your whole family. I'm so glad your whole family was able to go together. It looks like a lot of fun (especially when you consider all the snow you missed!). Nice to see smiles.

Kim said...

I'm so glad you guys came! It was so nice to get to see Lauren in person and not just read about her. You guys have a great family! We hope to see you all again soon and stay HEALTHY!

Love, Kim