RE: My Daughter - understand your frustration.

[Guest guest]

Hi Cammie, (apologies if I've gotten your name wrong),

I understand your frustration and desire to do something for your daughter.

It is difficult when dealing with doctors who sometimes don't listen to you.

Shireen's email gave some very useful information and can be printed/emailed

to your doctors.

The biggest risk is impairment of your daughter's vision during this early

time period. Although people are born with eyes they have to learn to see

and the development of this capability, or 'wiring to the brain' as I

explain it to people, should be a strong factor in surgery.

There are some risks with any surgery and resultant scarring. If her vision

is developing putting off surgery until her face is bigger may not be a bad

thing.

There are some people who have used surgical tape to 'open' their child's

eyes which is a good option if surgery is being recommended for later on.

The key thing is her vision is developing.

Trust your instinct and if 2nd or 3rd or 4th opinions from doctors who

understand BPES are required seek them out. You have to be the biggest

advocate for your child and sometimes act as the coordinator between all the

doctors, (plastic surgeons, opthamologists...)

My phone number is below if you ever want to talk in person - I didn't know

about this group when my son was born 8 years ago and I could have benefited

from the support, advice and information.

Good luck and chin up!

el.

Evergreen Lee

397 Freeman Crescent,

Oakville, ON L6H 4R4

Phone: 905 338-8762

Fax: 905 338-1157

Cell: 416 526-7581

>From: " cammie_avis " <cammie_avis@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis My Daughter

>Date: Mon, 18 Sep 2006 04:38:07 -0000

>

> My daughter is 23 months old and still has not had surgery. I read

>all of your stories and most of your children have already had the

>corrective surgery. I dont understand why our doctors dont want to do

>her surgery now. I have taken her to several surgeons adn they all say

>the same thing that she is too young. I am confussed and fustrated

>about this and dont know where to turn? If anyone has any advice please

>email me.

>

>

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