RE: vision/colobomas and growth

[Guest guest]

Quick answer, YES!!!

As for why its uncertain. For me i have no retnal detachment (thank

goodness!!) but now i have a really decent eye doctor who will

follow my vision changes.

I would definatly get a third test done. Keep in mind there are good

vision and bad vision days, very much like good and bad hearing days.

Chantelle

>

> Has anyone else had the situation where their childs colobomas

have gotten bigger and vision gotten worse as they have grown? Nate

has already lost central vision in one eye. And his " good " eye has

tested a whole degree worse since Aug. His colobomas have always

affected his retinas and been big, but I'm a bit concerned about

them now...

> Thanks,

> Barb-mom,(CHARGE)12 next Thursday,Rosie16

>

[Guest guest]

Chantelle-

This is amazing to hear you say. We have noticed for years that Aubrie's

hearing seems to fluctuate. I know some is related to sinus congestion, but

other times it's not necessarily something we can predict or follow. Can

you describe any reasoning to the " good and bad vision or hearing days " ??

Do you find the same to be true for speech? We also see that some days

Aubrie can speak more clearly than others. As if some days the neurological

functioning to those muscles is working ideally and other days it's

misfiring. Does that make sense?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: vision/colobomas and growth

Quick answer, YES!!!

As for why its uncertain. For me i have no retnal detachment (thank

goodness!!) but now i have a really decent eye doctor who will

follow my vision changes.

I would definatly get a third test done. Keep in mind there are good

vision and bad vision days, very much like good and bad hearing days.

Chantelle

>

> Has anyone else had the situation where their childs colobomas

have gotten bigger and vision gotten worse as they have grown? Nate

has already lost central vision in one eye. And his " good " eye has

tested a whole degree worse since Aug. His colobomas have always

affected his retinas and been big, but I'm a bit concerned about

them now...

> Thanks,

> Barb-mom,(CHARGE)12 next Thursday,Rosie16

>

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

it can and its not colibomas check for cateracts that what it is for me ive

got a small one over the left eye which is stable but its there

>

> Chantelle-

> This is amazing to hear you say. We have noticed for years that Aubrie's

> hearing seems to fluctuate. I know some is related to sinus congestion,

> but

> other times it's not necessarily something we can predict or follow. Can

> you describe any reasoning to the " good and bad vision or hearing days " ??

> Do you find the same to be true for speech? We also see that some days

> Aubrie can speak more clearly than others. As if some days the

> neurological

> functioning to those muscles is working ideally and other days it's

> misfiring. Does that make sense?

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Re: vision/colobomas and growth

>

> Quick answer, YES!!!

>

> As for why its uncertain. For me i have no retnal detachment (thank

> goodness!!) but now i have a really decent eye doctor who will

> follow my vision changes.

>

> I would definatly get a third test done. Keep in mind there are good

> vision and bad vision days, very much like good and bad hearing days.

>

>

>

>

> Chantelle

>

>

>

> >

> > Has anyone else had the situation where their childs colobomas

> have gotten bigger and vision gotten worse as they have grown? Nate

> has already lost central vision in one eye. And his " good " eye has

> tested a whole degree worse since Aug. His colobomas have always

> affected his retinas and been big, but I'm a bit concerned about

> them now...

> > Thanks,

> > Barb-mom,(CHARGE)12 next Thursday,Rosie16

> >

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

We haven't yet Barb, I hope Nate's colobomas don't get too big and cause him too

much trouble.

Please keep us posted, I know there will be a lot of us wondering about

that.

barbzwires@... wrote:

Has anyone else had the situation where their childs colobomas have gotten

bigger and vision gotten worse as they have grown? Nate has already lost central

vision in one eye. And his " good " eye has tested a whole degree worse since Aug.

His colobomas have always affected his retinas and been big, but I'm a bit

concerned about them now...

Thanks,

Barb-mom,(CHARGE)12 next Thursday,Rosie16

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

I''ve absolutely never heard of this. In fact, we were told, granted it was 21

years ago, that the colobomas would not change. has needed

changes in her glasses, but that's it. Please, Meg, Pam, or someone on

the professional side jump in here. Martha

[Guest guest]

Barb,

have they measured them bigger? I have been under the impression that colobomas

don't change in size.

pam

[Guest guest]

Pam-

Good question-I'll have to ask for a clarification. If the coloboma didn't

expand on the retina, then why did he lose the central vision in that eye?

Barb

PS-On a totally different subject-I'll be in Hull April 3-6. Off list details

later!

-------------- Original message ----------------------

> Barb,

> have they measured them bigger? I have been under the impression that

colobomas

> don't change in size.

> pam

>

>

>

[Guest guest]

I absolutely repeat what Pam says. Granted, wisdom could have changed

since was little, but this seems a bit much. Martha

[Guest guest]

Barb,

I, like others, will be fascinated to hear what is going on with the colobomas.

and...yes, let me know when you will be in Hull!!

pam

[Guest guest]

The coloboma itself shouldn't get bigger (it will grow along with the eye ball

itself, but the blind spot from the coloboma should stay at relatively the same

size). I was doing some reading about colobomas (and reminding myself what they

can look like--they can look very different in different people and depending on

which parts of the eye are involved), and another complication that can occur is

fluid accumulation under the macula (part of the eye that we use for fine

detailed vision). This is more likely if the coloboma involves the optic nerve.

So this is something that should be looked for if there is a decrease in the

central vision.

(mom to Evan and an O.D.)

lewcap@... wrote:

I''ve absolutely never heard of this. In fact, we were told, granted it was 21

years ago, that the colobomas would not change. has needed

changes in her glasses, but that's it. Please, Meg, Pam, or someone on

the professional side jump in here. Martha

[Guest guest]

The coloboma itself shouldn't get bigger (it will grow along with the eye ball

itself, but the blind spot from the coloboma should stay at relatively the same

size). I was doing some reading about colobomas (and reminding myself what they

can look like--they can look very different in different people and depending on

which parts of the eye are involved), and another complication that can occur is

fluid accumulation under the macula (part of the eye that we use for fine

detailed vision). This is more likely if the coloboma involves the optic nerve.

So this is something that should be looked for if there is a decrease in the

central vision.

(mom to Evan and an O.D.)

lewcap@... wrote:

I''ve absolutely never heard of this. In fact, we were told, granted it was 21

years ago, that the colobomas would not change. has needed

changes in her glasses, but that's it. Please, Meg, Pam, or someone on

the professional side jump in here. Martha