Wednesday, August 5, 2009


I can't think of a good lead-in to say that Collin has started to have seizures again. They don't look like the spasms he was having before, with the stiff arms and legs and the jackknife movement. He doesn't shake like a 'typical' seizure, either. He just gets very still and starts to breathe in short, hard breaths. The only similarity to the spasms is that his eyes get very wide. Doesn't sound like much, I know, but when you're always on the alert and so desperate to be seizure free, it is - as Kyle perfectly described - crushing.

The neurologist had told us that it would take ten to twelve days without spasms to be considered spasm free. Today was the tenth day.

So, I spent the afternoon on the phone with the neurologist's office and the compounding pharmacy. (The compounding pharmacy is today's MVP, by the way. The B6 suspension was supposed to take until tomorrow to make but after I told them it was for Collin's seizures, they made it in half an hour. I gave everyone a big smooch when I got there.) We decided to move ahead with a B6 regimen and, if it hasn't made a big difference in three days, to start increasing his Topamax. This, I am not looking forward to, since Collin seems to be even less himself on the Topamax than he was on the ACTH.

Also while we were on the phone, I voiced my concern about the side effects of the Clonazepam. Not only does Collin have a grossly dry mouth, a stuffy nose and a phlegmy cough (not a cold - started when he started the meds), but he also wakes up no more than twice a day, no kidding. Sometimes I literally cannot wake him up. But according to the nurse practitioner, that is the lesser of the evils right now and, as long as Collin keeps breathing well and 'rousing' (moving at all) when I bother him, we're going to stick with this medicine until he is seizure free. It's hard to explain, but these days when Collin sleeps like the dead all day are just as hard and stressful as the ones when he was growling nonstop. I guess the common factor is that in both cases, he feels so far away from us.

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