newly diagnosed daughter

[Guest guest]

Our daughter was born on 2/19/02 and diagnosed with BPES. We have seen

specialists and now realize that this a fairly rare syndrome. It

would seem that these surgical procedures not very common and choosing

a surgeon with significant experience in this area is important. Could

anyone provide names of doctors that they would recommend.

Another thing that concerns us is that she is only opening her eyes 2-

3 hours per day. Is this enough. Is it recommend to help open them up.

Any information would be greatly appreciated.

THANKS

[Guest guest]

hi, my daughter was diagnosed at birth but we found our way to a specialist

only seven weeks later, which i now feel took to long.

she also didnt open her eyes often. she slept a lot, at least thats what i

thought, afterwards i think i could have been wrong there. but as they say

that babies in general can sleep 20 hours or 7 hours a day... i suppose it

is okay if a baby doesnt open her eyes for long periods...

my daughters eyes opened for just a mere millimeter or two, dont know if

thats the same with your little girl. and with bright light even less.

she's been operated on her ptosis at 5 months to help her vision. before

this operation i had my doubts with her being so small and all, but now i am

really happy we went through it. it is great to have visual contact with her

and see that she is discovering the world around her!

my daughter has nystagmus (wobbly eyes) i am not sure if this came with

birth or because of upstruction of vision. and she doesnt realy move her

eyes from left to right. we are seeing our doctor in march to look at this.

we went to talk to three specialised doctors before the operation but i

presume you are in the USA as you dont mention were you are, so cant help

you there.

anyway, as it wont do any harm, i would advise you to stimulate your

daughters sight as much as possible with 'mobiles' above her bed, changing

(?) spot, etcetera and talk and play with bright colored stuff or small

lamps in front of her even if you think she's not noticing.

good luck,

bernice

ps this site is quite interesting as it describes part of the ptosis

operation, which i would have liked to have read beforehand:

http://www.emedicine.com/ent/topic97.htm

-----Oorspronkelijk bericht-----

Van: drdano189 [mailto:dano189@...]

Verzonden: Tuesday, February 26, 2002 3:25 AM

Aan: blepharophimosis

Onderwerp: blepharophimosis newly diagnosed daughter

Our daughter was born on 2/19/02 and diagnosed with BPES. We have seen

specialists and now realize that this a fairly rare syndrome. It

would seem that these surgical procedures not very common and choosing

a surgeon with significant experience in this area is important. Could

anyone provide names of doctors that they would recommend.

Another thing that concerns us is that she is only opening her eyes 2-

3 hours per day. Is this enough. Is it recommend to help open them up.

Any information would be greatly appreciated.

THANKS

[Guest guest]

> Our daughter was born on 2/19/02 and diagnosed with BPES. We have

seen

> specialists and now realize that this a fairly rare syndrome. It

> would seem that these surgical procedures not very common and

choosing

> a surgeon with significant experience in this area is important.

Could

> anyone provide names of doctors that they would recommend.

> Another thing that concerns us is that she is only opening her eyes

2-

> 3 hours per day. Is this enough. Is it recommend to help open them

up.

> Any information would be greatly appreciated.

> THANKS

Hello! My 8 year old daughter has blepharophimosis also. She has

had 2 plastic surgeries preformed by Dr. Larry Sargent of Chattanooga

tenn. He is the founder of the Tennesee Cranial Facial Foundation.

People from all over the world travel there for him to operate on

them. I'm also a nurse at the hospital where his in-patients stay.

I've seen his work on probably 100 or so people and I have never

heard anyone complain. He's a great surgeon!! I'm sure he has a

website. The number to the hospital (Erlanger) is (423)778-7000 Feel

free to e-mail me with any questions. Wilga hjwilga4@...

[Guest guest]

The doctor I reccommend is Dr. Albert Hornblass. His office is in New York

City on 67th Street. His telephone number is not handy, but any 411 should

be able to supply it. He has done my eyes, as well as my two brothers. He

has done at least 2 more surgeries other than us. He is excellant.

Good luck,

Dalia

>From: " hjwilga2 " <hjwilga2@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Re: newly diagnosed daughter

>Date: Mon, 09 Sep 2002 05:53:49 -0000

>

>

> > Our daughter was born on 2/19/02 and diagnosed with BPES. We have

>seen

> > specialists and now realize that this a fairly rare syndrome. It

> > would seem that these surgical procedures not very common and

>choosing

> > a surgeon with significant experience in this area is important.

>Could

> > anyone provide names of doctors that they would recommend.

> > Another thing that concerns us is that she is only opening her eyes

>2-

> > 3 hours per day. Is this enough. Is it recommend to help open them

>up.

> > Any information would be greatly appreciated.

> > THANKS

> Hello! My 8 year old daughter has blepharophimosis also. She has

>had 2 plastic surgeries preformed by Dr. Larry Sargent of Chattanooga

>tenn. He is the founder of the Tennesee Cranial Facial Foundation.

>People from all over the world travel there for him to operate on

>them. I'm also a nurse at the hospital where his in-patients stay.

>I've seen his work on probably 100 or so people and I have never

>heard anyone complain. He's a great surgeon!! I'm sure he has a

>website. The number to the hospital (Erlanger) is (423)778-7000 Feel

>free to e-mail me with any questions. Wilga hjwilga4@...

>

>

>

>