Today was a bit of mixed bag, and I’m still not sure how I feel about it. It started off well enough, mostly because Armand slept in pretty late — it was after 9 and breakfast was mostly ready before he even stirred. He woke up with a smile for me and took his time. He ate well for breakfast, relaxed a bit, almost went down for a nap but not quite. Around 1-ish Lindy took him in for a bath and he had his first episode of the day, but it wasn’t a game-breaker. He relax on Lindy while I finished getting some things ready, as the hotel shuttle to Amplatz was due around 1:45.
We had a 2:20 appointment with Dr. Karachunksi, Armand’s first meeting with the new neurologist (Dr. Rothman, who had previously met with Armand on our last 3 visits, left shortly after our last visit in November). Here’s where we have a large shift in our perspective. Armand had his nap interrupted when we had to leave, and for the most part he wasn’t happy. We had gotten him quite relaxed as the picture at right shows. Just after the doctor arrived and made introductions, and during some general questions, Armand had an episode. This is fortuitous, as even though he had one yesterday in front of Drs. Whitley and Utz, and has had them during therapy sessions, he’s never had one in front of a neurologist (Dr. Collins has only seen videos Lindy took on her phone). Dr. Karachunski is of the belief himself that these are mild seizures but there’s really only one way to be sure — an overnight video EEG. During his EEG session in April, they were unable to induce any seizure activity, so there was nothing conclusive and dystonia was merely assumed; his lack of reaction to the drug Keppra somewhat cofirmed this in our heads. This time he will have the EEG session tomorrow as soon as he gets out of the spinal tap/MRI/eye exam. It will be overnight, with the idea that more than likely he WILL have an episode during this time, and they will be able to get some sort of read on where the major malfunction is. We feel somewhat better that we will have some definite answers, but we’re both a little shaken because we thought we DID have the answer.
Also, we will be changing how Armand gets his medication, at least the miglustat. Typically now, we mix one 100mg capsule into 40ml of water, and then add 15ml of that solution to his drink 3-times per day, for a total of 45ml of solution. A slight bump to 50ml of solution would give us about 125mg of migulstat.
Got all that?
Well, our shift will now be to get him one full capsule opened up into a soft food like applesauce or yogurt, then topped off with about 10ml of solution at another part of the day. We’ve had a bit of trouble making sure he gets all three doses lately, especially with his increased episodes. So this way we can more easily make sure he at least gets all of his miglustat.
Final thought for tonight: I really want some ice cream.