Re: Another Newbie too =)

[Guest guest]

Hi Louise

Welcome to the site! Where do you live? This may help other members tell you the best surgeon (in their opinion) in that area. We live in the UK so we go to Moorfields Eye Hospital in London. Our daughter Holly is 4 now but the first in the family to have BPES and like you we didn't know what was wrong when she was born. As Holly was 2 weeks early they said she would open her eyes in time, which didn't happen, and Holly was then diagnosed from a book aged 4 months. Holly has had one operation aged 18 months due to her lids covering her pupils so they did a temporary eye lift on both eyes. This was amazing because her posture was how it should be as soon as the operation was done because she was tiliting her head to see before. Holly is due two more operations aged 6 which would be the more permanent eye lift and also the 'epicanthus' part of surgery where they widen the eyes from the inside of her nose

with the excess skin she has (hope that makes sense!?)

I remember it was a very stressful time in the first year because it was coming to terms with a new syndrome we had never heard of, operations on our beautiful new baby plus people staring and commenting wherever we went! People can be sooooo rude!!

If you have any questions please fire away - all the best to your family and .

Love Lucy (Hampshire, UK)

From: ltd19409 <ltd19409@...>Subject: blepharophimosis Another Newbie too =)blepharophimosis Date: Saturday, 30 May, 2009, 1:01 PM

Hi all,my name is Louise, and my first child (timothy) was born last month. At first nobody knew that anything was different until on the 2nd week when he didnt open his eyes that we went to see an eye doctor who diagnosed him with bleph. This is our first time as parents so we didnt even know when babies eyes usually open, some say right from day one, some say around a week. But after seeing this site, we are pretty sure that its bleph.at first, we started googling bleph and looking at the images and, lets just say we were devastated and crying nonstop. After looking at the lovely baby pictures here, we feel much better that bleph is "fixable" and everyone seems to have great children!There seems to be many opinions as to when the surgeries are to take place, as well as what technique is done. Also, there are many surgeons around the world but.. who to choose? I hear Dr Katowitz (Philly) does a lot of cases, Dr Deangelis (Toronto),

(UK).. how did everyone else choose?The first surgery is usually the frontal sling, but some drs fix the frontal sling and inverse thingy simultaneously? The second surgery addressing the ptosis issue? and then theres another surgery to fix the telecanthus?Im kind of confused. Many doctors seem to have different techniques. What to do? Thanks everyone. This website has made me feel much better already.!!Louise

[Guest guest]

Welcome to the group... Fortunately it was easy for us to choose because we have a surgeon here in our city in edmonton CANADA that specializes in BPES... thats how we chose..I say go with what you think is right for you, dont hesitate on getting second or even 3rd opinions... depending on where you live and how much experience the doctor hasOur son was also the first in our family and had surgery by 5 weeks of age Tonikka & ChrisEDMONTON ALBERTA CANADA On 30-May-09, at 6:01 AM, ltd19409 wrote:Hi all,my name is Louise, and my first child (timothy) was born last month. At first nobody knew that anything was different until on the 2nd week when he didnt open his eyes that we went to see an eye doctor who diagnosed him with bleph. This is our first time as parents so we didnt even know when babies eyes usually open, some say right from day one, some say around a week. But after seeing this site, we are pretty sure that its bleph.at first, we started googling bleph and looking at the images and, lets just say we were devastated and crying nonstop. After looking at the lovely baby pictures here, we feel much better that bleph is "fixable" and everyone seems to have great children!There seems to be many opinions as to when the surgeries are to take place, as well as what technique is done. Also, there are many surgeons around the world but.. who to choose? I hear Dr Katowitz (Philly) does a lot of cases, Dr Deangelis (Toronto), (UK).. how did everyone else choose?The first surgery is usually the frontal sling, but some drs fix the frontal sling and inverse thingy simultaneously? The second surgery addressing the ptosis issue? and then theres another surgery to fix the telecanthus?Im kind of confused. Many doctors seem to have different techniques. What to do? Thanks everyone. This website has made me feel much better already.!!Louise