Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 My name is Patty and I have a 3 yr. old daughter with BPES. She was diagnosed at birth and inherited it from her father. He had the surgery to correct it and it was quite successful. She has not needed surgery yet but is to have the first procedure to correct the epicathal folds and telecanthus. I also have a 1 yr old son who does not appear to have the gene. His eyes are very wide but he may have a very slight case and needs to see the geneticist eventually. She is now farsighted and just got glasses last month. The doctor did not feel that it was due to the BPES but that children with BPES tend to have vision problems. I have not noticed any developmental delays. She is happy, thriving well and appears to be ahead of most children in her preschool class. I am anxious about the surgery. It's nice to read about all of your experiences. When I first researched this in 1999, the info was very limited and very scarey and there weren't any support groups. Are any of you participating in the research by Dr. Small? Patty Quote Link to comment Share on other sites More sharing options...
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