We received some very encouraging news from the results of Gabriel’s genetic tests. He does not have the genetic indicator that means he will have this exact form of doose his entire life (scn1a or sociium channel- for people who like to research and learn about the technical stuff). Long story short the odds of him having stay on the ketogentic diet his entire life are very slim! Yippee! Very encouraging for the long run.
I am sure we will learn more at our appointment in September. We were able to get this information when Chuck called to get the billing figured out. (For regular readers, it looks like we will not have to pay for the genetic testing…the insurance company just needs more thorough explanation of why it was necessary for us).
We had made it 8 days seizure free when he had one in the middle of the night Wednesday. 8 days is a record since the diet, so we are counting that as a victory. We think the seizure may have happened because I had a hard time getting him to take his medicine last night and he spit most of it back out. In those cases we are supposed to redose. We think the combination of too much of one of the meds, paired with a late dinner caused the seizure last night. As always….total bummer that we had a seizure, but nice that we seem to be able to trace the causes better.
The seizure free count begins again this today….maybe we can hit 9 days this time :).
Ms. Judy said:
Great news pt.