It’s been really up and down for Ben. Overall, I would say he is doing better seizure wise…it just seems he has one type or the other right. Which is a great deal better than having both! I assume this irregular pattern is because of the Keppra wean, and we can expect more of the same for the next seven weeks.
He is having some withdrawal symptoms-lack of appetite and excessive sleepiness are the main two. Both of these issues are making him really, really whiny and clingy. Yesterday he slept an hour and a half in the middle of the day, and he’s asleep now, so I assume it will be a while before he wakes up.
He has a rash on his face, and since we are treating him for yeast and the rash has come back, Dave and I decided to take him to see Dr. Mark. He said that Ben has such excessive yeast, it’s just coming out through his skin as it leaves the body. We are going to keep treating him, and probably put him on a maintenance docs long term to try and keep him from getting here again. This is frustrating-I know what to do about yeast, naturally, but I can’t because of Keto. He just doesn’t get enough food for it to be effective.
Dr. Mark is concerned about how thin Ben still is…which surprised me. He wants to monitor that along with his growth. (I think Dr. Mark hadn’t seen Ben without a shirt since his last bout with swine flu and his recent growth spurt-he’s about the same height and weight as family members his age).
We also discussed something the geneticist had brought to my attention. The palms of Ben’s hands are super, super red, and they get hot sometimes. I had been relating this to seizure activity, which, if severe, can cause a fever. However, it was present the day Ben saw the geneticist, I have noted it several times since, and it was present today. Dr. Mark is going to do some research and get back to me, but this is a classic sign of auto immune disease. So there may be more tests in Ben’s future…we’ll see what Dr. Mark comes up with.