Does anyone have similar eye activity?

[Guest guest]

Hi friends;

I'm puzzled about something that's been happening

with Kirkland lately and I'm wondering whether it's

more mito-related than seizure. Hopefully, I may find

someone in the group who can shed some light on this

for me.

Lately, Kirkland's had a lot of episodes where

his eyes are pointed upward for long periods of times

(1 hr+). Often his seizures present with that type of

eye positioning but this is different. When he has a

seizure, his eyes definitely fixate upwards until he

comes out of it but then they come back down and he

starts to become aware again after about 1 minute. I

ask him to look at me to tell whether he's out or not

and if he's out, he'll look at me.

What happens in these new episodes is: his eyes

go up and he can't move them back down BUT he doesn't

have the other seizure behavior. He seems to hear us,

moves around as if he's responsive, makes regular

sounds, reacts to touches he doesn't like etc. but he

can't bring his eyes down. His pupils usually aren't

responsive during these episodes and his eyes don't

move in the opposite direction when his head is turned

(as with a doll).

It's really concerning me because these episodes

are happening more and more frequently. I've tried to

draw connections between med changes, constipation,

or other factors that might be causing it but to no

avail. That's why I thought I'd see if anyone else

has this type of problem. I don't know a lot about

dysautonomia but am I right that some of you were

talking recently about your kids not being able to

move parts of their bodies? I thought I remembered

some talk of the eyes in these instances??

He does have other autonomic issues: temperature

regulation probs (excessive sweating), motility

issues.

Could this type of eye activity be a sign of

dysautonomia as well?

I'd appreciate hearing from any of you that have

any suggestions. I'd hate for this to be

seizure-activity and I'm missing it. It's just not

typical and our neuro isn't sure either.

Thanks a bunch,

, mom to Kirkland 3.5 yrs, Complex One, devt'l

delays, seizures, g-j tube, O2, CVI,

__________________________________________________