Today was a pretty easy day. We met with Dr. Karachunski about Armand’s MRI, which came back unchanged from his previous tests as far as progression and white matter. He said basically to keep doing what we’re doing, that we can continue to raise his dose of Lamictal and maybe add in some Klonopin to help him relax on nights that he can’t sleep; he noted that some of the same drugs they use to help with spasticity can also help with sleep, but that he was hesitant to put him on even more drugs if it wasn’t interfering with his daily life.
We then met with Dr. Bothun about his eye exam, he again noted that his eyes looked good structurally, and after hearing that his CSF pressure was well within the normal range, he said that there’s nothing really of concern. Armand is ever so slightly farsighted, but he said that’s really perfectly normal in kids his age.
Finally we met with the cardiologist, who gave Armand a very quick EKG (I was actually downstairs at the time at the pharmacy and missed out entirely, but Lindy said it went very quick and Jefe did great). She said that there was no problems with his heart, that the walls look good and strong and nothing to be concerned about.
Which brings us back to what I’ve been thinking (if not writing) for the last several months once he got on the ketogenic diet and started to bounce back — if we could just get a good handle on his seizures and his sleep, this kid could start to make some real progress and maybe get to be someone featured as part of this study.
We’re now all done with appointments, and it looks like we’ll be leaving on Friday, so we have about 2 days to just relax and let Armand take it easy.