Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Machaela: Thank you... just turned 1 year. He is a patient at Stanford Children's Hospital. He does see a Genetiscist there, as well as a Neurologist. He did go to an eye specialist within his first month and they said he could see, but didn't have much else to offer. He has no vocal sounds, besides crying and laughing, which they tell us is a natural reflex. I appreciate you sharing your story and feel it is very helpful to know what others have and are experiencing. It's not like there are any local support groups for something that seems to be rare in occurance. I think my daughter is almost in a denial state because she hears so many different opinions, doctors, other mothers, etc. She cries some days and counts her blessings the next. When she is ready, she will be on this site asking and sharing her experiences too. Again, thank you and I'm glad I found this group.macster74 <macster74@...> wrote: My name is Machaela, and I am a new member. I have a 2yr old daughter who was diagnosed @ approx 10mths old. When she was born her eyes were not open, and the doctors tried to force them open. Like , they opened in the following days but with very small openings. We spoke to many different peadiatricions,doctors etc. who seemed very unsure of what the problem was. They assured us that her vision was fine but told us they had not seen of this before. Perhaps that was because we live in a reasonably small city. We were then referred to a specialist in Melbourne(aus!) where they began to suspect BPES but thought she was a little young to diagnose. By the time she was 10mths they were confident that it was BPES. Like you, we began to search the net to find what we could but, we too found that alot of it was very medical. I am in the nursing field so I could understand some of it but alot was really for surgeons etc. I was delighted to find this group and have found it is a great place for people to share experiences, stories etc but as I was told, the best place to get answers is a health professional. It appears to be a very individual thing. Maybe a geneticist would be someone of benifit for you to talk to, as we found that very benificial. It sounds as if your has other issues involved, but as for me, all I have to offer you is my story, and my own individual experience...Take care! and welcome to the group! Quote Link to comment Share on other sites More sharing options...
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