colobomas

[Guest guest]

and ,

has

no depth perception. From what I understand you need sight in both eyes

in order to perceive dept. is blind in one eye. He has great difficulties

walking if the ground is uneven. While at Helen Keller they taught him

how to use a sight cane. We have a cabin in the woods and like to go fishing,

hiking but with or without the cane absolutely refuses to venture

out if there isn't a nice level path to were we're going. The few times

we've been able to talk him into walking to the creek to swim it's all

you can do to hold him up. He stumbles so much that you both end up on

the ground if you try to support him. He also has the feet apart, knees

slighty bent and leaning to his blind side way of walking. When we are

out together he will always walk to my left and slightly behind me. My

getting stepped on has become somewhat of a joke.

Just wanted

to share. Hope some of the information helps.

) Vicki mom to

Graeme & Weir wrote:

,I

would just ask them exactly what you are asking us about the depth perception,

etc. I have heard of other kids having depth perception problems.

There was a little boy I met while Kennedy was in hospital who was older

(5) and he had CHARGE and if he came to 2 different floors (ie - hardwood

floors switching to cushion floor) he would have to get down and feel across

where the 2 floors joined before he would walk across it.Anyway,

good luck with the opth. let us know how it goes...

[Guest guest]

Hi ,

My name is Lori & I have a 5yr old daughter w/ CHARGE, named Cheyenne.

She also has colobomas in both eyes. You should ask the Dr.'s where the

colobomas are located, (i.e.:top,bottom,center) & you should also ask if the

colobomas are on the surface only or if they affect the optic nerve. This is

very important because if they affect the optic nerve then they affect the

vision - surface colobomas don't affect vision. A coloboma is a cleft of the

eye - the eye didn't finish forming - so if the coloboma goes as deep as the

optic nerve then it causes a blind spot in the vision field - this does not

mean your child is blind - it does mean that you should ask what percentage

of the eye is affected. All these things will help you understand where

you're child's vision is weakest & strongest so you can present things to

him where he sees them the best - this is very important for education!!

Children w/ colobomas are more suseptable to cataracts - for a while they

are small & limited to the area of the coloboma - so they don't affect

vision yet - but they grow, (some faster than others) & they can soon get

large enough for your child to have difficulty seeing around them - it is

VERY IMPORTANT to have you child checked regularly & frequently by the

opthamalogist to monitor the growth of the cataracts!!! Eventually cataracts

have to be removed.

My daughter's colobomas are in the bottom of the pupils & they affect about

1/4 of each eye, she also has cataracts in both eyes - the right eye is

still able to see very well, but the left eye now needs surgery to remove

the cataract. We'll be doing that sometime before Fall.

Please feel free to Email me anytime through the group or privately - my

Email is: mom2cheye@...

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

[Guest guest]

Lori,

I just wanted to let you know, that Hannah has Optic Nerve Colobomas & so far

there has been no affect of her vision. No blind spots etc. She gets

checked yearly & the doctor is so amazed that she sees so well!

Heidi

[Guest guest]

Lori,

Kennedy has b/l optic nerve colobomas and they are "just off to the side a bit" which is great meaning they don't affect her central vision. Her vision is "close to normal" with her glasses on.

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: colobomas

Lori,I just wanted to let you know, that Hannah has Optic Nerve Colobomas & so far there has been no affect of her vision. No blind spots etc. She gets checked yearly & the doctor is so amazed that she sees so well!HeidiFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Heidi,

You & the Dr. may be amazed at how well your child sees - my daughter

sees VERY WELL & her Dr. is amazed too - But there are blind spots!

They may be small & in an area that isn't as crucial as the rest of

the vision, for example: located in the bottom of the pupil, which

affects the upper part of the vision. This would mean that your

child's blind spot is in the upper periphial vision - that's not as

necessary for seeing many things - so she would seem pretty much

unaffected. (this is the case w/ my daughter) You should determine,

(w/the Dr.), where the blind spots

are - even if they seem insignificant, it's important!

Lori

[Guest guest]

Lori,

I'm curious about something. Hannah lays flat on her back with her feet up

by the TV & love to watch TV this way! I always thought it may have to do

something with her vision?

Heidi

[Guest guest]

Heidi-

My Aubrie sits the same way to watch TV lately. She's 2 1/2 and has

some minor colobomas but near-normal vision in her right eye and a large

coloboma involving the macula and optic nerve in her left (which gives

her limited peripheral vision only, we think). I don't know if the way

they sit means anything. I've seen plenty of " regular " kids do it too

but it's interesting that our girls both do.

Michele W

mom to Aubrie (2.5 yrs) CHaRgE and (8 yrs), wife to DJ, in IL

west@...