RE: Thank you for responding so quickly

[Guest guest]

Hi my name is Kerry and my husband and our daughter both have bleps it has been in our family for generations so we knew right away, my husband had surgery when he was 13 months old and it was done wrong and he since has suffered very badly with his eyes watering but when our daughter Mackeely was born we did not think twice about having her eyes fixed, for use it was the fact that we knew what my husband went through in school and we did'nt wont our daughter going through that.

Our daughter is due for her first surgery sometime in september and the doctors told us the other day she would only be in hospital for the day and the same with her second surgery and she should have both of her surgery by the time she is three. jricard5 <jricard5@...> wrote:

I would like to thank you all for responding so quickly. It is very hard to find anything out about this. When Ruth was born no one could tell us why she couldnt open her eyes. The pediatricians had no idea. They sent us to adult eye doctors first who didnt know what they were supposed to do with her. They sent us to a doctor from childrens hospital who knew right away. We also went to a genetics clinic where Ruth was diagnosed with BPES. Her eye doctor is concerned with her eyes not opening enough for her pupils to be fully uncovered. She is scheduled for surgery on May 11. My husband and I just are not sure how we feel. We don't want her to start to lose vision but we are nervous about her having surgery so young. Does anyone know if there is alot of scarring from the surgery. Will she be uncomfortable for long? We think she is

beautiful just the way she is but don't want to risk her vision. I posted some pictures of her. Thank you all again. Jill

[Guest guest]

about the scarring if you go and look at my son lyndens pictures I think by his last picture you can see that he has pretty much no scarring, I was told the younger they are the better chance there is for minimal scarring and quicker they heal. my sons surgeries were all day surgeries and was doing the same old things that night. by the way your daughter is very beautiful . we here wish you luck in your daughters surgery and hope all goes well.

Tonikka

-----Original Message-----From: jricard5 [mailto:jricard5@...]Sent: April 21, 2004 9:24 PMblepharophimosis Subject: blepharophimosis Thank you for responding so quicklyI would like to thank you all for responding so quickly. It is very hard to find anything out about this. When Ruth was born no one could tell us why she couldnt open her eyes. The pediatricians had no idea. They sent us to adult eye doctors first who didnt know what they were supposed to do with her. They sent us to a doctor from childrens hospital who knew right away. We also went to a genetics clinic where Ruth was diagnosed with BPES. Her eye doctor is concerned with her eyes not opening enough for her pupils to be fully uncovered. She is scheduled for surgery on May 11. My husband and I just are not sure how we feel. We don't want her to start to lose vision but we are nervous about her having surgery so young. Does anyone know if there is alot of scarring from the surgery. Will she be uncomfortable for long? We think she is beautiful just the way she is but don't want to risk her vision. I posted some pictures of her. Thank you all again. Jill

[Guest guest]

Hi Jill,

> The pediatricians had no idea.

Says it all. I've generally found most paediatricians to be pretty much

a waste of space. Some are marginally useful, but none will know what

BPES is.

> They sent us to adult eye doctors first who didnt know what they were

> supposed to do with her.

BPES is sufficiently rare that more ophthalmologists never see a case in

their entire career. If they do, and recognise it, they're often keen to

have a go at fixing it because it's technically interesting and is

another feather in their cap. Don't let them. Run away. Find someone

who's done it before.

> Does anyone know if there

> is alot of scarring from the surgery.

I assume it's the temporary ptosis surgery they're talking about? In

that case, the scarring is not too bad. A few tiny incisions just above

each eyebrow (partially hidden by the brow itself later - if bushy like

mine), and a few on the lid itself (which doesn't scar much anyway: I

can't see any scars on my lids).

> Will she be uncomfortable for long?

A few weeks ago I met a young bub (hi Josh!) less than a week after he'd

had his temp ptosis surgery, and he wasn't showing any discomfort at

all. (Short answer: no). He was as happy as a sunflower because he could

see so much better.

Let not your heart be troubled. Sight is too precious to worry about a

little (negligible in this case) scarring.

Rob