new diagnosis 11 week old infant

[Guest guest]

Hi all,

I was so relieved to find this group. Our son was just diagnosed last

week and we have been in a frenzy researching what the heck bleph is!

I found encouragement just by reading the recent posts, including

Kristy's (Kirsty's? sorry if sp wrong).

's opthalmologist is leaning toward doing the levator frontalis

suspension soon...we see him in two weeks when is 3 months old.

His ptosis is severe and the doc is concerned for his visual

stimulation. is very alert and interested in his surroundings

and cries when his eyelids can't open anymore to see. I'm at home

still on maternity leave so I spend half the day holding his eyelids

up so he can watch his mobile, see Larry and Bob the tomato on tv,

look outside at the green trees, etc. He seems so healthy and

intelligent every other way, we are so sad for him 'cause he gets

frustrated when he can't open those lids.

I am trying to get a quick second opinion at s Hopkins since we

live in the area so am waiting on that.

My question: I was wondering if anyone knows if the blepharophimosis -

the small eye openings - can be dealt with by surgery in a very

young infant. The opthalm. didn't mention anything about it at all,

just the sling surgery for his ptosis. It seems that the surgery to

open the eyes is considered more cosmetic than medically necessary -

is that correct?

I'm still learning what the diagnosis means...thanks for your help!

Debbie Barfoot