RE: my daughter is very strong

[Guest guest]

dear lois

hi my name is . My son Aedan is 19 months with one surgery onder his

belt. When I spoke to his surgeon about widening his eyes she is hesitant

because in her opinion it will make the opening smaller. I believe that because

it will help his eyes look more 'normal' it will help him tremendously

socially and emotionally. Doctors often forget to look at the children as a

whole.

That is our job I guess. Now to get the insurance companies to look at them

as whole children too. ha ha.

[Guest guest]

> When I spoke to his surgeon about widening his eyes she is hesitant

> because in her opinion it will make the opening smaller.

I don't understand how making the eye opening wider can make it smaller.

Did she say? Unless the surgeon isn't going to correct the ptosis, in

which case wider eyelids would droop more? But why wouldn't she correct

the ptosis too? Curiouser and curiouser.

When my son was in line for some surgery, I always got 2 or 3 opinions

from different surgeons, and made sure I chose surgeons who are

experienced in fixing the problem. I found way too many ophthalmic

surgeons out there who have no idea how to correct BPEI - not surprising

due to its rarity I guess. Still, it was well worth shopping around.

Rob

[Guest guest]

Hi Lois

If they operate and when they do so, depends on the severity of the

BPEI syndrome. My daughters eyes wouldn't open for some millimetres.

There's a picture of her before the ptosis-correction on the -

site. Some other photo's on the same site show some of the other

kids whose eye-openings are a little larger and then they wait

longer before operating, like wee little Ethan for instance. I once

met a 7 year old girl who hadn't been operated on because she had a

mild condition of BPES.

Where you from? We are from the Netherlands (your surname sounds

Dutch). Do you have good hospitals/doctors in the area? Do shop

around, like Rob mentioned.

Good luck,

Bernice

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

Van: lois broeren [mailto:jlbroeren@...]

Verzonden: dinsdag 13 januari 2004 8:05

Aan: blepharophimosis

Onderwerp: blepharophimosis my daughter is very strong

she is very strong in the back and neck she can have fits that she

does the

stiff as a board thing when she doesn't want todo thing like put her

jacket

on. This maybe a weird question but how do I get the doctors to

agree to

push for the surgey to widen her her eyes?

thanks lois