Feb 9, 2007

It is has been a stressful week with Lauren. She was back at Primary Children’s from Tuesday to Friday of this past week. She has been in almost a constant seizure state, with either staring off, dropping to the ground, or twitching and shaking in some way. There have been times on occasion when she has been herself but they don’t last long. We continue to adjust the medication hoping to get some control. She has been diagnosed with Lennox-Gastaut syndrome, which doesn’t usually respond to medication. We have been looking into taking her to Johns Hopkins to start a diet that has shown to help these kinds of seizure disorders (ketogenic diet). It has to be started in a hospital because they have to go without food for 48 hours then they slowly start introducing a high fat diet (90% fat). The doctors don’t know why this helps some people with hard to treat seizures but it can be more effective then the drugs. While we were at the hospital this past week we found out she might not be eligible for the diet because some of her metabolic tests came back abnormal. We are waiting for the results of a genetic test (VLCAD) to see if it is possible for her to start the diet.

We are so grateful to everyone for all the help and kindness we have received. It has been such a blessing in our lives. Thanks,