Re: Hi, I am new to the group, I live in Houston, Tx.

[Guest guest]

My son lynden had his 1st surgery at 6 weeks old and it was the best thing we could have done for him, we live in canada so i cannot tell you anything about texas childrens but there may be someone from this group who can, i can only tell you that my son had a brow lift and he looked remarkable, he then had another surgery soon after, then at 3 and again at 4 years old, he looks totally different. i wish you and your family luck with your son's surgeries and i hope all goes well, hopefully you can get some pictures posted soon.

Tonikka

-----Original Message-----From: dusteegutierrez [mailto:dusteegutierrez@...]Sent: October 16, 2004 5:13 AMblepharophimosis Subject: blepharophimosis Hi, I am new to the group, I live in Houston, Tx.My son is 11 weeks old, and has just been diagnosed with BPES. He has the drooping eyelids and the reversal of the eyelids. We went to Texas Childrens hospital here in Houston to the opthamology department and saw a specialist. It looks as though he is going to have to get sutures in the brow and the lids so he can open his eyes bigger so he will not ruin his vision. At this time his vision is o.k., thank goodness. We are afraid, if we are doing it too soon. The doctor said he would need a second surgery when he is four, to exchange the sutures for the tissue out of his leg. If anyone out there who has this and has had it done at Texas Childrens, please let us know. Our doctor who would perform the surgery is Evalyn Passye. Thank you for your support.

[Guest guest]

>

Hi! My name is Cheryl, my son Darryl has BPES and we had to have his

surgery done a 5 weeks old cause he couldn't lift up either of his

eye lids at all. So it was something we had to do. The surgery it

self really isn't as bad as it sounds and they recover pretty quickly.

We were lucky that the surgeon we had has training in working with

children, which is the advice I give to you is make sure your surgeon

has this type of training cause our surgeon said that children eyes

have different needs than the adults. We had to get special

permission from our insurance to use this surgeon because they had no

one in their network with his training. We live in Florida though but

I know there are some people in Texas in this group, check the data

base and maybe you can get thier e-mails and get some recommendations

on doctors in your area.

Also, I was wondering what reversal of the eyelids were? I haven't

heard of this condition assosicated with BPES, has anyone else heard

of it? Also, you can look at some of the photos, some people have

posted their children after having surgery done so you can get an

idea of what to expect. Hope this helps and know that you are not

alone. Cheryl

> My son is 11 weeks old, and has just been diagnosed with

> BPES. He has the drooping eyelids and the reversal of the

eyelids.

> We went to Texas Childrens hospital here in Houston to the

> opthamology department and saw a specialist. It looks as though he

> is going to have to get sutures in the brow and the lids so he can

> open his eyes bigger so he will not ruin his vision. At this time

> his vision is o.k., thank goodness. We are afraid, if we are doing

> it too soon. The doctor said he would need a second surgery when

he

> is four, to exchange the sutures for the tissue out of his leg. If

> anyone out there who has this and has had it done at Texas

> Childrens, please let us know. Our doctor who would perform the

> surgery is Evalyn Passye. Thank you for your support.