Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Dear OliviaWelcome to the group, to both you, Abraham and your family … you might have just seen my post welcoming Mildred, from Kenya.A good starting point for you to find out more about little Abraham’s condition is to look here:http://www.ncbi.nlm.nih.gov/books/NBK1441/ The main things to find out about are:When is the best time to have treatment? Is there a risk to vision?The article I have mentioned above has a section that covers this subject.There are several people who are members of this group from California. I am sure that they will reply, along with all the other people from around the world.Best wishesShireenEngland From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of OliviaGSent: 07 February 2011 22:21blepharophimosis Subject: blepharophimosis Abraham 9 months Hi,I'm a new member. My little guy, Abraham, is 9 months old, however, a preemie. He was born at 26 weeks. He is doing Wonderful for starting life out a little different! I kept asking about his eyes, but its interesting at the time, most Doctors we saw told us, " he's fine, he'll open his eyes, he was a preemie. " Needless to say, here in California, he has access to other followed care and a High Risk Dr who saw him two weeks ago did a bit more research. Last week, the genetic Dr. confirmed BPES. I feel good that we can get help for him and I'm nervous at the same time. We have our first Dr. appt. with the eye doctor, I assume he is going to refer us out to a surgeon, this Wednesday. What questions should I ask him to ensure I get Abraham the best care I can? We are from Northern California. Thank you so much for this site! I hope to post pictures soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Hi Shireen, Thank you! I was contacted by a California family! And they live not to far away! We spoke this morning and I already feel better. I will take a look at the link for more information. Talk to you soon, Olivia From: Shireen Mohandes <shireen@...>blepharophimosis Sent: Tue, February 8, 2011 9:21:02 AMSubject: RE: blepharophimosis Abraham 9 months Dear Olivia Welcome to the group, to both you, Abraham and your family … you might have just seen my post welcoming Mildred, from Kenya. A good starting point for you to find out more about little Abraham’s condition is to look here: http://www.ncbi.nlm.nih.gov/books/NBK1441/ The main things to find out about are: When is the best time to have treatment? Is there a risk to vision? The article I have mentioned above has a section that covers this subject. There are several people who are members of this group from California. I am sure that they will reply, along with all the other people from around the world. Best wishes Shireen England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of OliviaGSent: 07 February 2011 22:21blepharophimosis Subject: blepharophimosis Abraham 9 months Hi,I'm a new member. My little guy, Abraham, is 9 months old, however, a preemie. He was born at 26 weeks. He is doing Wonderful for starting life out a little different! I kept asking about his eyes, but its interesting at the time, most Doctors we saw told us, "he's fine, he'll open his eyes, he was a preemie." Needless to say, here in California, he has access to other followed care and a High Risk Dr who saw him two weeks ago did a bit more research. Last week, the genetic Dr. confirmed BPES. I feel good that we can get help for him and I'm nervous at the same time. We have our first Dr. appt. with the eye doctor, I assume he is going to refer us out to a surgeon, this Wednesday. What questions should I ask him to ensure I get Abraham the best care I can? We are from Northern California. Thank you so much for this site! I hope to post pictures soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi Olivia Welcome to the group. It sounds like you have given Abraham a great start. I suppose the question we were all worried about regarding our kids with BPES was whether their vision would be okay. My daughter had her first surgery, a lid lift, at 2 yrs old. She is now 8 yrs old and wears glasses. Nowadays the surgery is often done much sooner, not uncommonly in the first year. Being a premie, there are so many factors to consider and it will emphasise that everyone's treatment is tailored to that person. Find a doctor you trust and get a second opinion before making a final decision would be my advice. Best of luck and keep us posted with Abraham's news. Regards (Colchester, UK) > > Hi, > I'm a new member. My little guy, Abraham, is 9 months old, however, a preemie. He was born at 26 weeks. He is doing Wonderful for starting life out a little different! I kept asking about his eyes, but its interesting at the time, most Doctors we saw told us, " he's fine, he'll open his eyes, he was a preemie. " Needless to say, here in California, he has access to other followed care and a High Risk Dr who saw him two weeks ago did a bit more research. Last week, the genetic Dr. confirmed BPES. I feel good that we can get help for him and I'm nervous at the same time. We have our first Dr. appt. with the eye doctor, I assume he is going to refer us out to a surgeon, this Wednesday. > What questions should I ask him to ensure I get Abraham the best care I can? We are from Northern California. Thank you so much for this site! I hope to post pictures soon > Quote Link to comment Share on other sites More sharing options...
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