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Daughter with BPES

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I've been reading the posts since my daughter was born in March

2005. She did not open her eyes at all until she was about a week

old. We took her to a Pediatric Opth. and he didn't tell us much

except that she had blepharophimosis which was a fancy word for small

eye openings. I immediately went home and starting searching on the

internet and have learned a lot since then. We took her back when

she was 5mths and I went with a copy of an article on BPES and

asked " Does she have this " . Of course he said yes, but he actually

recommends no treatment until she is 12 or 13 yrs old. He basically

said as long as she can learn to tilt her head back, which she can,

she will be fine. As of now, her vision seems fine. She does open

one eye more that the other. I'd like to get a second opinion and

would be willing to take her anywhere there is a MD who specializes

in BPES, or is more familiar with it. We live in East TN. Is there

anyone in the group who has a MD in TN, KY, GA, NC, or SC?

I have learned a lot from this group, read the posts almost every

day. I appreciate your support you all have for each other. It is

really difficult to deal with this some days. She is the first in our

family. She is a beautiful little girl, so happy and developing

fine. She is our little miracle as it took us 3 years to have her! I

just want to do all that I can for her.

Thanks a lot!

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