Ricky's week

Ricky went to the pulmonologist this week for a CF checkup. His O2 saturation was down just slightly, he'd grown a tiny bit (but his growth curve is still flat), and his spirometry looked great. He's still got the end of the sinus infection. He's going to start on Periactin again. It's supposed to make him have a bigger appetite. He was on it for a couple of years a while back and it never seemed to do anything, but we'll see what happens this time.

A couple of nights ago, Ricky had what was clear to me to be an absence seizure. He was sitting up watching TV and doing his breathing treatments, and I went over to give him his next nebulizer. He didn't respond to me. Then I noticed that his eyes were open but rolled back in his head. I thought maybe he'd gone to sleep but it didn't make sense because he was sitting straight up. Plus, he had had a 5-6 hour nap that day and by rights, should not have been sleepy even though it was 10 at night. About a minute later, he came out of it and asked Andrew and me what had happened. He was pretty confused and it was clear now that he had *not* been sleeping.

I called the neurologist's nurse yesterday (well, Thursday) to report the seizure. She has yet to call me back -- which seems pretty irresponsible. I want to know what happens next. Change meds? EEG again? Guess we'll wait and see.

olfactory seizures?

Ricky made a statement this evening that he has made before, only this time I paid more attention: That he had a "funny feeling" in his chest followed by a weird smell.

This time I remembered hearing about sensory seizures, specifically olfactory seizures. He has brought this up a few times before, but it never connected with me. If these ARE seizures, they are minor compared to the other ones he has had. But still worth mentioning to the neurologist. He is on a seizure med already (Trileptal) but apparently there are other ones that can help with sensory seizures...

It is a good thing that we are seeing the neurologist soon, eh?

Goodnight.