I got a call from Collin's neurologist early this afternoon and he explained that the PET scan showed a slight abnormality in the left frontal temporal region of the brain. He went back over Collin's MRI's, but couldn't find anything there that would indicate what might have caused the abnormality. The strange thing is that the EEG's all show that the spasms are coming from both sides of the brain. Because the problem seemed to be in one area, the doctor wondered whether Collin might be a good candidate for a brain surgery that targets epilepsy, so he called a colleague at the Cleveland Clinic who is a specialist in these surgeries. They came to the consensus that Collin is not a candidate for the surgery at this time because his problem does not appear to be localized enough and because his spasms seem to be coming under control with the help of drugs. If the seizures come back or stop responding to medication, we would revisit this. In the meanwhile, we are going to move forward with the lumbar puncture and some more bloodwork to cover the last few plausible possibilities of underlying causes for his spasms.
I also discussed with the doctor how sedated Collin has become. He sleeps almost constantly throughout the day and there are many times that I have a really difficult time rousing him at all, much less keeping him awake. We decided to back him down a little bit off of the Clonazepam and see if that helps. If the spasms come back, we'll try something else - possibly a B6 regimen.
On a side note, Kyle and I celebrated our 7 year anniversary today by taking Collin to Qdoba and then to the pool. He has come a long way since the last experience, in which he started to scream the moment his toes touched the water. This time, he sat in our laps on the steps and tolerated the water all the way up to his belly, at which point he stuck out his lip. I've tried to explain to him that being extra cute is not a good tactic for getting people to change their ways, but he's not a good listener yet. Then we cuddled in some lounge chairs and he gave us our anniversary present by opening his eyes all the way and smiling and laughing while we played with his arms and feet. So awesome.