new member / repetitive surgeries

Posted February 6, 2006 · February 6, 2006

I just found this support group. My daughter is 3 yrs old. She was

born with the inability to open her eyes at all. She had her first

surgery at 8 wks. She had a problem with granulomas after the surgery

that didn't heal up and so the doctor had to go in and clean those up

after putting up with scabs on her eye brow for about a year. She

had frontalis sling surgery when she was a little over two. The

problem that we have had is that one of her eyes seem to be pulled

better than the other one. Her optometrist has been concerned so she

is having us patch her good eye 6-8 hrs a day. I guess I was just

wondering if there was anyone else that had so many surgeries at this

young of an age. If the patching doesn't help she will probably be

facing another surgery this year sometime.

Posted February 7, 2006 · February 7, 2006

Welcome, I've only been a member since Nov. My daughter is 20 and has BPES. She didn't open her little eyes until she was 4 days old. She didn't have her first surgery til 5 years of age. She was such a little thing that she had to grow (meaning she had to wait) to be able to use the fascia from her leg and that was at age 6. We opted not to use a cadaver donor (our preference). Her opthalmologist patched her right eye because she wasn't using the left one properly. This was before and during Kindergarten (ages 4-5). I have to admit that there were and still are times that I catch myself telling to open her eyes. I really understand how important it is to catch certain things with the eyes early so that children do not lose the ability to see properly. I work in an elementary school and there are children who have eyes patched and a lot that should. (They

don't have BPES, though). My daughter had excellent care. She has near-sightedness and a slight astigmatism. She's worn glasses since she was 1 1/2 years old. I haven't posted pics yet. My prayers go out to you and all you have and are going through. We're from Wisconsin, USA. Where are you from? Is your daughter the first? My is. Take good care, From Terry ('s Mom)bleph_1 <bleph_1@...> wrote: I just found this support group. My daughter is 3 yrs old. She was born with the inability to open her eyes at all. She had her first surgery at 8 wks. She had a problem with granulomas after the surgery that didn't heal up and so the doctor had to go in and clean those up after putting up with scabs on her eye brow for about a

year. She had frontalis sling surgery when she was a little over two. The problem that we have had is that one of her eyes seem to be pulled better than the other one. Her optometrist has been concerned so she is having us patch her good eye 6-8 hrs a day. I guess I was just wondering if there was anyone else that had so many surgeries at this young of an age. If the patching doesn't help she will probably be facing another surgery this year sometime.

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Posted February 7, 2006 · February 7, 2006

Unfortunately, we have had repetitive surgeries, also.

My daughter had 4 surgeries before she was six months old to put in

the silicon slings. She is now 18 months and we patch her left eye 3

times per week. Her right eye is a little bit lazy. We expect she

will have two more surgeries, the canthioplasty and the " more "

permanent slings.

I have BPES, I haven't had any surgeries since I was 4.

I know how hard it is to have a procedure done and find it didn't

turn out properly and have it done again. It's very very hard and

it's very hard when it's your little baby.

Beth

> I just found this support group. My daughter is 3 yrs old. She

was

> born with the inability to open her eyes at all. She had her first

> surgery at 8 wks. She had a problem with granulomas after the

surgery

> that didn't heal up and so the doctor had to go in and clean those

up

> after putting up with scabs on her eye brow for about a year. She

> had frontalis sling surgery when she was a little over two. The

> problem that we have had is that one of her eyes seem to be pulled

> better than the other one. Her optometrist has been concerned so

she

> is having us patch her good eye 6-8 hrs a day. I guess I was just

> wondering if there was anyone else that had so many surgeries at

this

> young of an age. If the patching doesn't help she will probably be

> facing another surgery this year sometime.

>

Posted February 7, 2006 · February 7, 2006

hi there,

Welcome to the group:) Here you will find a lot of information on bleph, and a lot of people to back you up when you need it:)

We have a 3 year old son named Ethan (pix @ site wearing pumpkin suit), he has had no surgeries yet, due to have his 3 year check up at opthalmologist in a few weeks. He has so far shown no signs of his eyes been a problem, he has never had a chin up posture to see, he just lifts from his eyebrows:) He runs around like you wouldn't believe, just like any other 3 year old! You cannot stop him:) Sure he has had a few run in's with doors and stuff, but what preschooler hasn't:) have you got pix of your daughter you can share? would love to see if you do....take care

Leanne and family NZ

-- blepharophimosis new member / repetitive surgeries