Sshhhh...

Our seizure free day counter is now up to 72. Woo Hoo! The last few seizures Gracie had have all been febrile - caused by fever. Her last non-febrile seizure was in October 2008. In regards to seizures - Gracie is doing great!



Grace has decided that the diet is not for her. She go to the point where she just flat-out refused to eat - anything! Of course, she would be happy to have a chip or cracker or such but nothing else. The beginning of the month, Grace dropped back into the 24 pound range. We did try force-feeding her but she is getting smarter - she would make herself gag until whatever got forced down came back up - or she would just spit out a mouthful of oil or heavy cream at whoever was trying to feed her. Out of desperation, we started letting her eat all of the protein that she liked; we switched from heavy cream to all oil; we started giving her Flintstone chewable vitamins instead of the Nano VM vitamins. As of this morning she was almost back to 26 pounds - 25.8 to be exact.



In the midst of the Gracie's hunger strike she was also having trouble staying awake. She was taking 5 hour naps in the middle of the day and barely able to stay awake at night until bedtime. She had a cold but that just did not explain her state of exhaustion. We got some lab work done and lo and behold, her Depakote levels were high again. Her neurologist lowered the dose by one capsule daily and we have been doing great. It took a few days for Grace to get back to a normal sleeping habit. Everything else was fine. We were worried about anemia and liver function but those were fine.



We go back to the doctor and the keto team on Tuesday morning. We put off our three-month visit because that was the point we were to make a committment. We are not ready to commit to the full ketogenic diet at a 4:1 ration. We are willing to commit to a Modified Adkins - which is pretty much what we have been doing the last few weeks.



Our neurologist cautioned us to not anger the seiure gods and we have been trying. However, we have given up on the strictest version of the keto diet and we adjusted her medication. Hopefully, the seizure gods stay in agreement and Grace stays seizure free!



Marie



P.S. I was at a family function today and I was reminded that many people have been checking the blog and I have not updated it recently! I will try to do better!