Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Just wanted to chip in! My daughter is now 5 months and she also has a smaller left eye. We will be visiting an oculoplastic surgeon in Atlanta in Nov. to determine if she needs any surgery now or if we can wait. We all need to become Dr.’s since our combined knowledge and experiences seem to be more than the medical profession has. The left eye similarity is interesting. blepharophimosis Smaller left eye My daughter Sami has BPES and also has a smaller left eye. She is now 4 years old and had her first surgery to correct the epicanthal folds in April. We are currently scheduling the corrective surgery for the ptosis. She also has difficulty with her tear ducts, but just since the first surgery. We have not noticed any other related symptoms. It is amazing how active this group has become. Just 4 years ago, when she was diagnosed, it was very difficult to get any info. My husband also has BPES but really never knew the correct diagnosis. He also had the corrective surgeries. I will try to post some pics soon. Patty > > > > Hello, > > > > This email message is a notification to let you know > > that > > a file has been uploaded to the Files area of the > > blepharophimosis > > group. > > > > File : /scan0002.jpg > > Uploaded by : leanne30nz <tltne@x...> > > Description : ethan age 5 months old (no > > surgeries) > > > > You can access this file at the URL > > > > > blepharophimosis/files/scan0002.jpg > > > > > > To learn more about file sharing for your group, > > please visit > > > > http://help./help/us/groups/files > > > > Regards, > > > > leanne30nz <tltne@x...> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 My daughter, who turns 4 next week, also has a smaller left eye opening. She hasn’t had surgery yet. Wow, how interesting. --Sheila blepharophimosis Smaller left eye My daughter Sami has BPES and also has a smaller left eye. She is now 4 years old and had her first surgery to correct the epicanthal folds in April. We are currently scheduling the corrective surgery for the ptosis. She also has difficulty with her tear ducts, but just since the first surgery. We have not noticed any other related symptoms. It is amazing how active this group has become. Just 4 years ago, when she was diagnosed, it was very difficult to get any info. My husband also has BPES but really never knew the correct diagnosis. He also had the corrective surgeries. I will try to post some pics soon. Patty > > > > Hello, > > > > This email message is a notification to let you know > > that > > a file has been uploaded to the Files area of the > > blepharophimosis > > group. > > > > File : /scan0002.jpg > > Uploaded by : leanne30nz <tltne@x...> > > Description : ethan age 5 months old (no > > surgeries) > > > > You can access this file at the URL > > > > > blepharophimosis/files/scan0002.jpg > > > > > > To learn more about file sharing for your group, > > please visit > > > > http://help./help/us/groups/files > > > > Regards, > > > > leanne30nz <tltne@x...> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 My son Elias is 2 jears old with BPES. His left eye also is smaller than the other. The doctor told us, that there is no surgery nessesary now. The doctor will do the epicanthus fold, when Elias is about 5 jears old. The other surgeries will follow then. Next time I try to post some photos. Excuse my english! Sabine > > > > > > Hello, > > > > > > This email message is a notification to let you know > > > that > > > a file has been uploaded to the Files area of the > > > blepharophimosis > > > group. > > > > > > File : /scan0002.jpg > > > Uploaded by : leanne30nz <tltne@x> > > > Description : ethan age 5 months old (no > > > surgeries) > > > > > > You can access this file at the URL > > > > > > > > blepharophimosis/files/scan0002.jpg > > > > > > > > > To learn more about file sharing for your group, > > > please visit > > > > > > http://help./help/us/groups/files > > > > > > Regards, > > > > > > leanne30nz <tltne@x> > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 hi patty...what do they do to correct the epicanthal folds??? blepharophimosis Smaller left eye My daughter Sami has BPES and also has a smaller left eye. She is now 4 years old and had her first surgery to correct the epicanthal folds in April. We are currently scheduling the corrective surgery for the ptosis. She also has difficulty with her tear ducts, but just since the first surgery. We have not noticed any other related symptoms. It is amazing how active this group has become. Just 4 years ago, when she was diagnosed, it was very difficult to get any info. My husband also has BPES but really never knew the correct diagnosis. He also had the corrective surgeries. I will try to post some pics soon. Patty> > > > Hello,> > > > This email message is a notification to let you know> > that> > a file has been uploaded to the Files area of the> > blepharophimosis > > group.> > > > File : /scan0002.jpg > > Uploaded by : leanne30nz <tltne@x...> > > Description : ethan age 5 months old (no> > surgeries) > > > > You can access this file at the URL> > > >> blepharophimosis/files/scan0002.jpg> > > > > > To learn more about file sharing for your group,> > please visit> > > > http://help./help/us/groups/files> > > > Regards,> > > > leanne30nz <tltne@x...>> > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Hi shelly...I know I have probably been told before, but it goes straight our the ears! what does the surgery involve, when they correct the epicanthal folds??? Re: blepharophimosis Smaller left eye Patty, You had said that your husband also has BPES and never knew the correct diagnosis. I myself have it and up until July of this year i had always been told it was just Ptosis. My oldest son who just turned 10 has it and so does my youngest who turned 5 in July. It took my youngest son, who has a worse case than anyone in my family who has it, to even get the correct diagnosis. I was totally beside myself. Just couldn't believe after all these years of going to the same surgeon that i was just now finding the correct name for it. My youngest just had his epicanthal folds done on Aug. 29th. Everything looks very good, except for the flap of skin that sticks out from him busting 2 of his stitches while picking at it when he was sleeping. The surgeon said that it might blend in, but if not then he will fix it when he does his next surgery in 4-6 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2003 Report Share Posted September 13, 2003 Patty, You had said that your husband also has BPES and never knew the correct diagnosis. I myself have it and up until July of this year i had always been told it was just Ptosis. My oldest son who just turned 10 has it and so does my youngest who turned 5 in July. It took my youngest son, who has a worse case than anyone in my family who has it, to even get the correct diagnosis. I was totally beside myself. Just couldn't believe after all these years of going to the same surgeon that i was just now finding the correct name for it. My youngest just had his epicanthal folds done on Aug. 29th. Everything looks very good, except for the flap of skin that sticks out from him busting 2 of his stitches while picking at it when he was sleeping. The surgeon said that it might blend in, but if not then he will fix it when he does his next surgery in 4-6 months. Quote Link to comment Share on other sites More sharing options...
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