Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Hi All: Our 11 week old son has just been diagnosed BPES. The only indicator to us was that his eyes were not as wide as our other two children. I have been actively searching on the internet for a good explanation of what this means . . . can some of you help with some insight or point me to some good reference sources? Are there different levels of severity? Is there more than the cosmetic part of this? Are you better off doing surgery earlier? Any information that you can provide would be very helpful. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 anrweber wrote: > Hi All: Hi anrweber > Our 11 week old son has just been diagnosed BPES. The only indicator > to us was that his eyes were not as wide as our other two children. > > I have been actively searching on the internet for a good explanation > of what this means . . . can some of you help with some insight or > point me to some good reference sources? Here's a start: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=\ yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html (but it's mainly a genetics-related article) Here's one about ptosis surgery: http://www.emedicine.com/ent/topic97.htm Were you after anything in particular? > Are there different levels of severity? Yes. In some folks it's so mild that they don't know they have it at all, whereas others' ptosis is so severe that they can't open their eyes at all. Most are between those two extremes. > Is there more than the cosmetic part of this? The syndrome itself is just blepharophimosis (due to telecanthus), ptosis and epicanthus inversus - hence the name BPEI Syndrome (BPES). Some other mild (comorbid) features commonly occur but are not strictly or definitively part of the syndrome. One type of BPES often affects female fertility. I try to blame BPES for my aversion to household chores and my taste for beer, but my domestic authorities remain steadfastly unconvinced. What would SHE know, I say!? > Are you better off doing surgery earlier? If sight is being adversely affected, doctors will do an early temporary ptosis repair so that sight can develop normally. Bleph and EI are usually repaired together, and ptosis, just before starting school (for social reasons), but can be done later. The later it's done, the easier for the surgeon it is and more reliable the results (more skin to work with, bigger face/eyelids, more fascia lata tissue available in the legs, etc.) Rob W Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 THANK YOU. I appreciate your thoughtful responses. Rob --- Rob <r.watson@...> wrote: > anrweber wrote: > > Hi All: > > Hi anrweber > > > Our 11 week old son has just been diagnosed BPES. > The only indicator > > to us was that his eyes were not as wide as our > other two children. > > > > I have been actively searching on the internet for > a good explanation > > of what this means . . . can some of you help with > some insight or > > point me to some good reference sources? > > Here's a start: > http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=\ yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html > (but it's mainly a genetics-related article) > > Here's one about ptosis surgery: > http://www.emedicine.com/ent/topic97.htm > > Were you after anything in particular? > > > Are there different levels of severity? > > Yes. In some folks it's so mild that they don't know > they have it at > all, whereas others' ptosis is so severe that they > can't open their eyes > at all. Most are between those two extremes. > > > Is there more than the cosmetic part of this? > > The syndrome itself is just blepharophimosis (due to > telecanthus), > ptosis and epicanthus inversus - hence the name BPEI > Syndrome (BPES). > Some other mild (comorbid) features commonly occur > but are not strictly > or definitively part of the syndrome. One type of > BPES often affects > female fertility. > > I try to blame BPES for my aversion to household > chores and my taste for > beer, but my domestic authorities remain steadfastly > unconvinced. What > would SHE know, I say!? > > > Are you better off doing surgery earlier? > > If sight is being adversely affected, doctors will > do an early temporary > ptosis repair so that sight can develop normally. > Bleph and EI are > usually repaired together, and ptosis, just before > starting school (for > social reasons), but can be done later. The later > it's done, the easier > for the surgeon it is and more reliable the results > (more skin to work > with, bigger face/eyelids, more fascia lata tissue > available in the > legs, etc.) > > Rob W > Oz > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi I think Rob has given you a great answer to your e-mail but thought I would say 'hi'. My name is Lucy and we live in Hampshire,UK with our daughter Holly aged 2. Holly is the first in the family born with BPES and Holly was diagnosed about 4 months old from a book because no doctors had seen it before. We are now being cared for at Moorfields Eye Hospital in London and Holly had her first operation last September. If the eye lids cover any part of the iris they will lift the eyelids up to help their eyes/sight develop to their full potential. Holly is due two more operations and that should be it then. The way I see BPES is that they have been born with no muscle in the eyelids and have small eye openings. Some children may need surgery to help lift their eyelids up but some have it so mild they don't need surgery. We found it hard at first to get our heads around but after reading posts on this site and learnng more it definitely helped. It was also hard with other peoples reactions and comments sometimes saying she was asleep or what was wrong with her eyes etc. But it has got easier and since Hollys operation I have only had two comments in 7 months, and purely to say her eyes are small. So what, small but beautiful. If you have any questions please feel free to ask. Also, where do you live? Take care Lucy (Hampshire, UK)anrweber <anrweber@...> wrote: Hi All:Our 11 week old son has just been diagnosed BPES. The only indicator to us was that his eyes were not as wide as our other two children.I have been actively searching on the internet for a good explanation of what this means . . . can some of you help with some insight or point me to some good reference sources?Are there different levels of severity? Is there more than the cosmetic part of this? Are you better off doing surgery earlier? Any information that you can provide would be very helpful.Thank you. is the world's favourite email. Don't settle for less, sign up for your free account today. Quote Link to comment Share on other sites More sharing options...
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