About a month ago my little boy would sometimes make this face that we took as him being funny- it looked like he was very somber, on the verge of crying. He would stay like that for a few seconds, then break into a grin and laugh. He'd do it once every other day or so. Then I noticed when he was doing it, he would zone out where he couldn't be snapped out of it, and his right eye would noticeably twitch and/or spasm. His breathing also increased very heavily, and would clench and grit his teeth. He would also do it when he didn't think we were watching him, so I know it's not for attention.
We went to the pediatrician two weeks ago, and we were describing what he does for the doc, and he had an episode (don't know what else to call it) right then and there, so that was pretty lucky. The doc didn't seem overly worried, but scheduled to have an EEG test done on him.
His episodes increased, from one every other day to one or two a day. They seem to come on when he is tired, or didn't get a nap in that day. I was really intent on getting him in for either an EEG or to see a neurologist ASAP, so we got a break and saw a neurologist shortly thereafter. Of course, my son was in high spirits and didn't have an episode during our visit, which would have been good. So the doc just observed him and asked us questions, and concluded that he is 99% sure that they are not epileptic seizures, which was my first thought- based on the fact that he can respond (albeit through clenched teeth) and can crane his neck toward me when I talk to him during an episode.
I don't think this is just a tic, though. A few days ago he had the biggest one yet that scared the crap out of me. I was about 5 seconds away from calling 911. He was sitting right next to me, and I notice that he starts to do it, with his downturned grimace. I said, "Are you okay, buddy?" And he starts to wail his fists and hands together, like in a very fast, repeated motion. Breathing increased to sounding very labored, teeth clenched, looking kind of wildly around, and he didn't snap out of it. I felt his little heart and it was racing. Then he lies back on the couch, still stiff as a board, still grimacing mouth, breathing very loud, looking panicked almost. After an eternity (20-30 seconds) he relaxes and he looks okay. I said, "Are you okay, buddy?" His usual automatic response is "Yeah," but he said, "No." Broke my heart. My wife said he occasionally touches his head afterward and says "Head hurt."
We finally had the EEG done yesterday, and tomorrow we get the results. I have scoured the Internet and asked every doctor I know, but I can't find any information anywhere. My wife is convinced it's muscular dystrophy or some other hardcore serious ailment. For a second I thought he might have Tourette's. I know uninformed laypeople + the internet is a horrible combination for diagnosing ailments, but seriously, doesn't this sound like more than a tic? You need to see what he's doing in order to appreciate my terror. My descriptions aren't doing it justice. I told my wife to keep the camera downstairs so if he does do it she can videotape it so we can show the doctors.
This sucks. I broke down sobbing the other day in my office. It wouldn't be so bad if I knew what it was but it could be a million different things- no big deal, because he's just acting it out (which I am 99.999% sure it is not), or some physical problem (something pushing on his brain stem?) or neurological, and my little guy is nuts. If the EEG is negative, then what? CAT scan? MRI? Spinal tap? Where does it end? Have any of you ever heard of something like this before?
Thanks for reading / letting me vent my fears.