anyone-- seizure like activity??

Nevin'sMom · Posted: Wed Mar 04, 2009 6:18 pm Post subject: anyone-- seizure like activity??

3-4 years ago, Nevin (now 19) had a few "episodes" that looked almost seizure like. In the first one he lost consciousness and went down like a ton of bricks.... breaking his glasses, and getting some big bruises. After he went down, his whole body jerked for maybe 15 seconds...... then he was fine, confused but fine. He had several smaller/similar "episodes" over the next few months. He had lot's of tests, EEG, EKG, neuro appt at UI, appt with Dr. Menezes @ UI to check out his neck............ no real diagnosis. Possibly seizure..... but would have to catch it on EEG.... possibly covulsive syncope (which is essentially fainting with a convulsion).
Then........ 3 years...... no problems. Then this week (Monday) he had another one.... a big one, didn't lose consciousness...... but took four giant staggering steps backwards, caught himself in the doorframe and then stood there with a look of terror [out of it] in his eyes while his whole body jerked for about 5-10 seconds.
He has an echocardiogram scheduled for Monday.

Anyone have similar experiences??

Ben'sMom · Posted: Thu Mar 05, 2009 12:14 am Post subject:

Laurie,
I haven't had anything like that with my family, but wanted to offer my support.
That sounded like a scary time for all of you. I sure hope you can find out what is happening. I'll keep an eye out for this type of thing, and see if I can learn anything for you.
You are all in my thoughts and prayers...
_________________
Cynthia Anderson
Mom to Ben, 8 and Katherine, 4

maysonsmama · Board Member Joined: 11 Aug 2007 Posts: 54

we personally dont have any experience. But I have a friend who's lil daughter has a seizure disorder and also has DS. She knows so much . I can hook you up with her if you want.. Just email me!!! hugs!
_________________
Amy, wife to Mike and mama to
Jayden 14
Rylee 11
Mayson (DS) 3

Nevin'sMom · Posted: Thu Mar 05, 2009 9:39 am Post subject:

another "episode" last night, was just standing at the kitchen counter ...staggered a few steps and nearly fell, ....... so I guess we're going back into a round of these again. Hope we're able to figure it out soon and hope he doesn't have an "episode" at the top of the stairs or something.

We had just started to leave him alone again for short periods of time (since we moved..... we were less comfortable leaving him)....... but I guess we're done with that for a while.