I know how hard it is to wait for the neuro appt, but i'm glad you have it. What you really need to do is keep a diary of events you are seeing and include the date, time and what you saw during the event. If you noticed staring for a few seconds, then just put that down. You don't have to necessarily time it, unless it goes longer than a couple of minutes. It would also be helpful to the neuro to know if your son is responsive during the episodes. If you happen to see him do more staring or shivering, try to call his name in your usual tone and see if he responds. If he does not respond, then put that down as part of the event in the diary you're keeping. This is helpful to the neuro as it helps to identify the types of seizures your son may be having, if that is what they are. Also, try to set up a video camera to capture one of these. I know it's hard to know when they will happen, but if you notice your son is on the couch watching tv and shivering, then would be a good time to have the video rolling - inconspicuously of course. I was able to capture several episodes of my son and it really seemed to help the neuro to have not only the video, but also the diary. I will say that the eeg he had was very abnormal, which correlated with the seizures we were witnessing. Please keep me posted on how he's doing.

Thank you for your comments. We'll see if we can get some video. I'll let you know how the appointment goes, though it seems like an eternity away... I hope your son is ok.

My son is 11 and started having seizures when he was 5. He is in the process of being weaned off his medications, so we've come a long way! My son also has tourettes and at first it was difficult for the neuro to distinguish what was a tic and what was a jerking moving related to the epilepsy. Over time we've come to easily identify each. He has complex partial seizures and his tics have changed over the years. The thought did cross my mind that your son could be having a tic (shivers), but not necessarily tourettes, which takes a year to diagnose. Either way, just keep note of what he's doing for the neuro. Be sure to write down your questions before you get there because it's so easy to forget them during the visit. I'm sure your son will be okay. It's just a matter of finding out what it is and if he needs treatment. The waiting is always the worst part!

Cjd60,
during my seizures I do shiver but its more that my teeth chatter. Like i'm freezing cold. Most people that see this happen want to cover me with a blanket. It usually last for few minutes.
Also, when your son is doing these things.... Staring, shivering etc. Ask him how he's feeling. If he has any funny taste in his mouth. Sometimes during seizures you get a metal taste in your mouth.
Not only do I have seizures but my daughter has them and keeping a log of how you feel, and your senses,and having the kids describe things the best as they can really helps the doctors.

Still amonth before the appt. I've gone through days of complete obsession over this, doing nothing at work even but reading up. And then days of being ok, thinking he is alright... The shivers are so inconspicuous that people don't notice them. We have visitors now and they are spending significant play time with him, but do not pick up on them. Nor does my wife, who is choosing to be the unpanicked one in all of this. When I read your response though, i'm again getting nervous. While I have noticed no new staring episodes, and no "streaks" of the shivering / shuddering, I have noticed the past few days that he has been fussing oddly with his tongue, as if something tastes bad or it itches. He still does not speak, so I can't get specific answers. But when I ask him if he wants to brush it off or rinse it, he accepts. Perhaps the metalic taste you are referring to. But i'm not connecting this behavior (yet) with any identifiable shivering or absence. Thanks for your input!