Tuesday, June 15, 2010


So, I have to say that I was a little blindsided by this one. Collin has been a little grouchy and grinding his teeth, but he's done that off and on for weeks. His ketones have been slightly down, but nothing drastic, and I've been tinkering with his fat sources to find something better suited to his body. He was starting to get into a good sleep cycle, he had been incredibly interactive and active and aware. I just didn't see it coming.

I took monitor duty again because I was so sure that we were going to have another good night, but I woke up at 3 am to a sound that I knew wasn't right. I looked at the video monitor and saw that he was moving, but couldn't tell what was going on for sure, so I went into his room. He seemed upset, but nothing else stood out, so I repositioned him and went back to bed. I heard more sound 15 minutes later and then at 3:30, I just happened to open my eyes at the exact moment that he was launching into a tonic seizure. I got to his room by the time he was done and had started crying.

By around 5, we had decided that the seizures were starting to cluster, so we have him 1 clonazepam and they stopped shortly after. This is huge, because it means that what we were hoping with the clonazepam wean has happened: he has become more sensitive to it again so we can use it as a 'rescue med' without having to fight his resistance to it. It also means, though, that the sedative effect of the drug has kicked back in. Collin slept until 10:30, tried to fall back asleep at 1, but had another seizure, and then fell asleep at 1:30 after another clonazepam and has been asleep ever since. I'm so glad his seizures seem to respond, but it's really hard when this time yesterday, he was smiling and laughing and starting to look at himself in a mirror and wiggling all over.

It had been exactly one month since his last seizure. He had ONE half pill left before his last wean was officially over.

We're not sure what we're going to do at this point. I have contacted our nutritionist at the hospital to see if she has any insights. I'm adding Miralax to his diet for a couple of days to make sure it's not a digestive issue. We're increasing his Tylenol again to make sure it's not a pain factor. Other than that, I guess we're just watching and thinking at this point. We're going to spend some quiet family time tonight recharging to make the rest of this week, whatever it brings.

Let me just say, though, that I am SO THANKFUL for this past month. It has been a true joy getting to see Collin's personality more and more and watching him starting to really respond to his NACD program, therapies, his environment, and people. Just yesterday during vital stim, we realized that he was telling us that he wanted more! What a thrill to communicate with my child. It was such a treat to deal with things like sleep schedules and crying and Collin talking too loudly in public places. I'm trusting that this will pass and that the next seizure free time, however long it ends up being, will be that much sweeter.


  1. "I'm trusting that this will pass and that the next seizure free time, however long it ends up being, will be that much sweeter."

    Amen. :)

  2. It sounds like you had some incredibly good times with Collin. I hope this episode is short. Could it be that growth spurts bring on the seizures?

  3. I sincerely hope that sleep schedules, crying, and a loud Collin are the order of the day sooner rather than later.