r eye activity?

[Guest guest]

I recently had my 27 mo. Old evaluated by

a nuero opthamologist per the request of Dr. Cohen, my daughters mito doc. It was VERY

helpful.

She has several eye movement

irregularities although her vision is completely functional. It is my

understanding that abnormal eye movement disorders are inherent to mito, BUT they can have

two different causes. 1) being lack of energy – which is why vision is

often affected by mito- you may notice as I do, your childs eye movements

worsen during illnesses, fatigue periods etc. and 2 ) nuerological in origin-

the important thing is to determine if there is opthomoplegia present, or any

atrophy to the optic nerve or retina etc. etc… Only a nuero-opthamologist

can give you the most detailed appraisal of cause or extent of the eye muscles

being affected vs. an opthamologist or a nuerologist. There are about 300 in

the country. I saw one in Phoenix

that was comfortable seeing a 2 year old and the results were helpful. If you

have a decent insurance policy, or access to a nuero opthamologist through a

clinic I would pursue this.

They will probably want a complete

nuerological history with recent MRI’s or EEG’s also. Hope this

helps!!

Suzanne

From: Kilbride

Sent: Thursday, September 09, 2004

7:26 AM

To: mito support group

Subject: Does anyone have similar eye activity?

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,

__________________________________________________