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My daughter was born in September,2004 and like your daughter she did not open her eyes for a while. Now she will be turning 1 year old in a few days we have not had much information from the doctors also. We have saw two surgeons and they are recommending that wwe wait a few years before she has surgery also. I like you have been lucky to find this web site. I found all the information that I know about BPES on here also. I will keep you and your family in my prayers.amybrms <amybrms@...> wrote:

I've been reading the posts since my daughter was born in March 2005. She did not open her eyes at all until she was about a week old. We took her to a Pediatric Opth. and he didn't tell us much except that she had blepharophimosis which was a fancy word for small eye openings. I immediately went home and starting searching on the internet and have learned a lot since then. We took her back when she was 5mths and I went with a copy of an article on BPES and asked "Does she have this". Of course he said yes, but he actually recommends no treatment until she is 12 or 13 yrs old. He basically said as long as she can learn to tilt her head back, which she can, she will be fine. As of now, her vision seems fine. She does open one eye more that the other. I'd like to get a second opinion and would be

willing to take her anywhere there is a MD who specializes in BPES, or is more familiar with it. We live in East TN. Is there anyone in the group who has a MD in TN, KY, GA, NC, or SC?I have learned a lot from this group, read the posts almost every day. I appreciate your support you all have for each other. It is really difficult to deal with this some days. She is the first in our family. She is a beautiful little girl, so happy and developing fine. She is our little miracle as it took us 3 years to have her! I just want to do all that I can for her.Thanks a lot!__________________________________________________

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Amy, it sounds like your saying my story. The Dr, did put her to sleep, to get a closer look, but he said its simply cosmetic, and she should wait till she's 4 to do anything. Does anybody find that odd ? April wrote to me and gave me some questions to ask and that i will follow up on. But then again, does anyone see any red flags going up regarding his words or attitude ?

thanks , karen

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My daughters doctor has said the same. I have found out that it seems to be good advice. The Dr's all say if she can see and is developing than there is no rush. I to like you have questioned them and got a second opinion and the 2nd dr said basically the same as the 1st. I wish you the best of luck and will pray for your baby and family."mieritz7@..." <mieritz7@...> wrote:

Amy, it sounds like your saying my story. The Dr, did put her to sleep, to get a closer look, but he said its simply cosmetic, and she should wait till she's 4 to do anything. Does anybody find that odd ? April wrote to me and gave me some questions to ask and that i will follow up on. But then again, does anyone see any red flags going up regarding his words or attitude ?

thanks , karen__________________________________________________

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I live in VA. My daughter is 14 months, I am 35.

Tilting the head back is really hard to " unlearn " .

--- In blepharophimosis , " amybrms " <amybrms@y...>

wrote:

> I've been reading the posts since my daughter was born in March

> 2005. She did not open her eyes at all until she was about a week

> old. We took her to a Pediatric Opth. and he didn't tell us much

> except that she had blepharophimosis which was a fancy word for

small

> eye openings. I immediately went home and starting searching on

the

> internet and have learned a lot since then. We took her back when

> she was 5mths and I went with a copy of an article on BPES and

> asked " Does she have this " . Of course he said yes, but he actually

> recommends no treatment until she is 12 or 13 yrs old. He basically

> said as long as she can learn to tilt her head back, which she can,

> she will be fine. As of now, her vision seems fine. She does open

> one eye more that the other. I'd like to get a second opinion and

> would be willing to take her anywhere there is a MD who specializes

> in BPES, or is more familiar with it. We live in East TN. Is

there

> anyone in the group who has a MD in TN, KY, GA, NC, or SC?

> I have learned a lot from this group, read the posts almost every

> day. I appreciate your support you all have for each other. It is

> really difficult to deal with this some days. She is the first in

our

> family. She is a beautiful little girl, so happy and developing

> fine. She is our little miracle as it took us 3 years to have her!

I

> just want to do all that I can for her.

> Thanks a lot!

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Amy

It's wonderful to hear that your daughter's vision and development

are fine! My daughter is almost 14 months, she had her ptosis

corrected already because she couldn't open her eyes sufficiently.

She also is a happy, healthy toddler. I have BPES and so does my dad.

I am glad you posted, glad to know about other little girls out there.

I live in VA, and Lily had surgery at Children's Hospital in DC.

Please contact me if I can help you with anything else.

There is a family on this board from TN. I am not sure how much they

check the posts.

take care

Beth

--- In blepharophimosis , " amybrms " <amybrms@y...>

wrote:

> I've been reading the posts since my daughter was born in March

> 2005. She did not open her eyes at all until she was about a week

> old. We took her to a Pediatric Opth. and he didn't tell us much

> except that she had blepharophimosis which was a fancy word for

small

> eye openings. I immediately went home and starting searching on

the

> internet and have learned a lot since then. We took her back when

> she was 5mths and I went with a copy of an article on BPES and

> asked " Does she have this " . Of course he said yes, but he actually

> recommends no treatment until she is 12 or 13 yrs old. He basically

> said as long as she can learn to tilt her head back, which she can,

> she will be fine. As of now, her vision seems fine. She does open

> one eye more that the other. I'd like to get a second opinion and

> would be willing to take her anywhere there is a MD who specializes

> in BPES, or is more familiar with it. We live in East TN. Is

there

> anyone in the group who has a MD in TN, KY, GA, NC, or SC?

> I have learned a lot from this group, read the posts almost every

> day. I appreciate your support you all have for each other. It is

> really difficult to deal with this some days. She is the first in

our

> family. She is a beautiful little girl, so happy and developing

> fine. She is our little miracle as it took us 3 years to have her!

I

> just want to do all that I can for her.

> Thanks a lot!

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Hi

My name is Lucy and my husband, Garry, and I have a daughter called Holly who was born February this year. She is the first in the family to have BPES and it has been a very high learning curve since the diagnosis!!! Your words are just like what has happened to us and it would be great if we could keep in touch because our daughters are the same age and we are going through the same things. What do you think?

We live in Hampshire, UK. Where do you live?

Would love to hear from you

Take care

Lucy xamybrms <amybrms@...> wrote:

I've been reading the posts since my daughter was born in March 2005. She did not open her eyes at all until she was about a week old. We took her to a Pediatric Opth. and he didn't tell us much except that she had blepharophimosis which was a fancy word for small eye openings. I immediately went home and starting searching on the internet and have learned a lot since then. We took her back when she was 5mths and I went with a copy of an article on BPES and asked "Does she have this". Of course he said yes, but he actually recommends no treatment until she is 12 or 13 yrs old. He basically said as long as she can learn to tilt her head back, which she can, she will be fine. As of now, her vision seems fine. She does open one eye more that the other. I'd like to get a second opinion and would be

willing to take her anywhere there is a MD who specializes in BPES, or is more familiar with it. We live in East TN. Is there anyone in the group who has a MD in TN, KY, GA, NC, or SC?I have learned a lot from this group, read the posts almost every day. I appreciate your support you all have for each other. It is really difficult to deal with this some days. She is the first in our family. She is a beautiful little girl, so happy and developing fine. She is our little miracle as it took us 3 years to have her! I just want to do all that I can for her.Thanks a lot!

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Tilting there heads back for so long ....WILL LEAD TO MAJOR BACK AND NECK PROBLEMS IN THE FUTURE...seek other advice on that. bethgordon03 <bethgordon03@...> wrote:

I live in VA. My daughter is 14 months, I am 35. Tilting the head back is really hard to "unlearn".> I've been reading the posts since my daughter was born in March > 2005. She did not open her eyes at all until she was about a week > old. We took her to a Pediatric Opth. and he didn't tell us much > except that she had blepharophimosis which was a fancy word for small > eye openings. I immediately went home and starting searching on the > internet and have learned a lot since then. We took her back when > she was 5mths and I went with a copy of an article on BPES and > asked "Does she have this". Of course he said yes, but he actually > recommends no treatment until she is 12 or 13 yrs

old. He basically > said as long as she can learn to tilt her head back, which she can, > she will be fine. As of now, her vision seems fine. She does open > one eye more that the other. I'd like to get a second opinion and > would be willing to take her anywhere there is a MD who specializes > in BPES, or is more familiar with it. We live in East TN. Is there > anyone in the group who has a MD in TN, KY, GA, NC, or SC?> I have learned a lot from this group, read the posts almost every > day. I appreciate your support you all have for each other. It is > really difficult to deal with this some days. She is the first in our > family. She is a beautiful little girl, so happy and developing > fine. She is our little miracle as it took us 3 years to have her! I > just want to do all that I can for her.> Thanks a lot!

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HI all .. tis Leah here from Hastings , NewZealand.. I have Ethan with BPES whose 6, he had his surgery at 2 years. I found a msjor problem with him having to tilt his head to see because they are seeing that eye level stuff they cannot also see the ground where they are walking as well and continually trip over anything left on the ground. I also agree that it MUST sooner or later affect their neck etc and not to mention that it poses more of a self conscious look when in the company of other children. I thinkyou should be pushing for the surgery to be done within the first 5 years if you can especially before your darling starts school. I havent posted a note for ages but read all the posts every day. Ethan still has his problem with low muscle tone and is still in nappies which i am finding VERY tiresome. He had a little accident also yesterday whilst in the care of his Dad. His Dad was swinging a plastic bat to hit a swingball and copped Ethan fair and square in the right eye. So he has a cut down the side of his eye, cannot open the eye which is swollen up like a golf ball, so today we went for xrays to see if any damage has been done to the eye, hopefully when we get the xrays back from the specialist all will be ok. But it makes life rather hard for him trying to just use the one eye, which is also his lazy eye!!! the only benefit is that hopefully it will strngthen the lazy eye somewot. Life is fun here!!!

Well must away. You are a great network of support for each other and i feel very proud to belong to such a caring, kind group.

Re: blepharophimosis Re: Daughter with BPES

Tilting there heads back for so long ....WILL LEAD TO MAJOR BACK AND NECK PROBLEMS IN THE FUTURE...seek other advice on that. bethgordon03 <bethgordon03@...> wrote: I live in VA. My daughter is 14 months, I am 35. Tilting the head back is really hard to "unlearn".> I've been reading the posts since my daughter was born in March > 2005. She did not open her eyes at all until she was about a week > old. We took her to a Pediatric Opth. and he didn't tell us much > except that she had blepharophimosis which was a fancy word for small > eye openings. I immediately went home and starting searching on the > internet and have learned a lot since then. We took her back when > she was 5mths and I went with a copy of an article on BPES and > asked "Does she have this". Of course he said yes, but he actually > recommends no treatment until she is 12 or 13 yrs old. He basically > said as long as she can learn to tilt her head back, which she can, > she will be fine. As of now, her vision seems fine. She does open > one eye more that the other. I'd like to get a second opinion and > would be willing to take her anywhere there is a MD who specializes > in BPES, or is more familiar with it. We live in East TN. Is there > anyone in the group who has a MD in TN, KY, GA, NC, or SC?> I have learned a lot from this group, read the posts almost every > day. I appreciate your support you all have for each other. It is > really difficult to deal with this some days. She is the first in our > family. She is a beautiful little girl, so happy and developing > fine. She is our little miracle as it took us 3 years to have her! I > just want to do all that I can for her.> Thanks a lot!

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Lucy,

Hope you get this message...I'm still learning, never posted on a

group before. I think that would be great to keep in touch. My

husband in and is one light of our life, she's almost

sitting up now, not crawling, but rolling everywhere! And we think

she is cutting her two bottom teeth. We also have a son, ,

who is 7 who is the other light in our life! We live in Newport

which is in Eastern TN, USA. It is about 20-30 miles from Gatlinburg

and Pigeon Forge TN, which are big tourist areas if you may have

heard of them. What does your doctor say about Holly? Are you just

playing the wait and see game? I don't like that, I feel like I need

to be doing something to help . But giving her lots of love and

hugs are probably the best thing in the world anyway! It's great to

have someone about the same age... keep in touch please! Take care!

Amy

> I've been reading the posts since my daughter was born in March

> 2005. She did not open her eyes at all until she was about a week

> old. We took her to a Pediatric Opth. and he didn't tell us much

> except that she had blepharophimosis which was a fancy word for

small

> eye openings. I immediately went home and starting searching on

the

> internet and have learned a lot since then. We took her back when

> she was 5mths and I went with a copy of an article on BPES and

> asked " Does she have this " . Of course he said yes, but he actually

> recommends no treatment until she is 12 or 13 yrs old. He basically

> said as long as she can learn to tilt her head back, which she can,

> she will be fine. As of now, her vision seems fine. She does open

> one eye more that the other. I'd like to get a second opinion and

> would be willing to take her anywhere there is a MD who specializes

> in BPES, or is more familiar with it. We live in East TN. Is

there

> anyone in the group who has a MD in TN, KY, GA, NC, or SC?

> I have learned a lot from this group, read the posts almost every

> day. I appreciate your support you all have for each other. It is

> really difficult to deal with this some days. She is the first in

our

> family. She is a beautiful little girl, so happy and developing

> fine. She is our little miracle as it took us 3 years to have her!

I

> just want to do all that I can for her.

> Thanks a lot!

>

>

>

>

>

>

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Lucy,

Hope you get this message...I'm still learning, never posted on a

group before. I think that would be great to keep in touch. My

husband in and is one light of our life, she's almost

sitting up now, not crawling, but rolling everywhere! And we think

she is cutting her two bottom teeth. We also have a son, ,

who is 7 who is the other light in our life! We live in Newport

which is in Eastern TN, USA. It is about 20-30 miles from Gatlinburg

and Pigeon Forge TN, which are big tourist areas if you may have

heard of them. What does your doctor say about Holly? Are you just

playing the wait and see game? I don't like that, I feel like I need

to be doing something to help . But giving her lots of love and

hugs are probably the best thing in the world anyway! It's great to

have someone about the same age... keep in touch please! Take care!

Amy

> I've been reading the posts since my daughter was born in March

> 2005. She did not open her eyes at all until she was about a week

> old. We took her to a Pediatric Opth. and he didn't tell us much

> except that she had blepharophimosis which was a fancy word for

small

> eye openings. I immediately went home and starting searching on

the

> internet and have learned a lot since then. We took her back when

> she was 5mths and I went with a copy of an article on BPES and

> asked " Does she have this " . Of course he said yes, but he actually

> recommends no treatment until she is 12 or 13 yrs old. He basically

> said as long as she can learn to tilt her head back, which she can,

> she will be fine. As of now, her vision seems fine. She does open

> one eye more that the other. I'd like to get a second opinion and

> would be willing to take her anywhere there is a MD who specializes

> in BPES, or is more familiar with it. We live in East TN. Is

there

> anyone in the group who has a MD in TN, KY, GA, NC, or SC?

> I have learned a lot from this group, read the posts almost every

> day. I appreciate your support you all have for each other. It is

> really difficult to deal with this some days. She is the first in

our

> family. She is a beautiful little girl, so happy and developing

> fine. She is our little miracle as it took us 3 years to have her!

I

> just want to do all that I can for her.

> Thanks a lot!

>

>

>

>

>

>

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Thanks to all for your responses, I read the posts every day and

appreciate your support!

> > I've been reading the posts since my daughter was born in

March

> > 2005. She did not open her eyes at all until she was about a

week

> > old. We took her to a Pediatric Opth. and he didn't tell us

much

> > except that she had blepharophimosis which was a fancy word

for

> small

> > eye openings. I immediately went home and starting searching

on

> the

> > internet and have learned a lot since then. We took her back

when

> > she was 5mths and I went with a copy of an article on BPES

and

> > asked " Does she have this " . Of course he said yes, but he

actually

> > recommends no treatment until she is 12 or 13 yrs old. He

basically

> > said as long as she can learn to tilt her head back, which

she can,

> > she will be fine. As of now, her vision seems fine. She does

open

> > one eye more that the other. I'd like to get a second

opinion and

> > would be willing to take her anywhere there is a MD who

specializes

> > in BPES, or is more familiar with it. We live in East TN.

Is

> there

> > anyone in the group who has a MD in TN, KY, GA, NC, or SC?

> > I have learned a lot from this group, read the posts almost

every

> > day. I appreciate your support you all have for each other.

It is

> > really difficult to deal with this some days. She is the

first in

> our

> > family. She is a beautiful little girl, so happy and

developing

> > fine. She is our little miracle as it took us 3 years to

have her!

> I

> > just want to do all that I can for her.

> > Thanks a lot!

>

>

>

>

>

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Dear Leah,

Hello, my name is Beth. My son is 2 years old. He had his 1st surgery at 5 months. Your note caught my eye because of your mention of Ethan's lazy eye and muscle tone. Its hard to tell so soon in 's 2 years but he just feels different than his sister with regard to muscle tone. Could you please explain what in particular you mean when you say low muscle tone? Also, has a lazy eye like Ethan. His Ped Opth Guy had us put a patch on his "good" eye just recently. All day every day for the last 2 weeks. One week to go then we check his vision in the lazy eye again to see if the vision has improved. Whats next? Who knows. We will see at his Oct. 4 visit.

I look forward to hearing from you soon.

Bethleah Forsyth <leahs_male@...> wrote:

HI all .. tis Leah here from Hastings , NewZealand.. I have Ethan with BPES whose 6, he had his surgery at 2 years. I found a msjor problem with him having to tilt his head to see because they are seeing that eye level stuff they cannot also see the ground where they are walking as well and continually trip over anything left on the ground. I also agree that it MUST sooner or later affect their neck etc and not to mention that it poses more of a self conscious look when in the company of other children. I thinkyou should be pushing for the surgery to be done within the first 5 years if you can especially before your darling starts school. I havent posted a note for ages but read all the posts every day. Ethan still has his problem with low muscle tone and is still in nappies which i am finding VERY tiresome. He had a little accident also yesterday whilst in the care of his Dad. His Dad was swinging a plastic bat to hit a swingball and copped Ethan fair

and square in the right eye. So he has a cut down the side of his eye, cannot open the eye which is swollen up like a golf ball, so today we went for xrays to see if any damage has been done to the eye, hopefully when we get the xrays back from the specialist all will be ok. But it makes life rather hard for him trying to just use the one eye, which is also his lazy eye!!! the only benefit is that hopefully it will strngthen the lazy eye somewot. Life is fun here!!!

Well must away. You are a great network of support for each other and i feel very proud to belong to such a caring, kind group.

Re: blepharophimosis Re: Daughter with BPES

Tilting there heads back for so long ....WILL LEAD TO MAJOR BACK AND NECK PROBLEMS IN THE FUTURE...seek other advice on that. bethgordon03 <bethgordon03@...> wrote: I live in VA. My daughter is 14 months, I am 35. Tilting the head back is really hard to "unlearn".> I've been reading the posts since my daughter was born in March > 2005. She did not open her eyes at all until she was about a week > old. We took her to a Pediatric Opth. and he didn't tell us much > except that she had blepharophimosis which was a fancy word for small > eye openings. I immediately went home and starting searching on the > internet and have learned a lot since then. We took her back when > she was 5mths and I went with a copy of an article on BPES and > asked "Does she have this". Of course he

said yes, but he actually > recommends no treatment until she is 12 or 13 yrs old. He basically > said as long as she can learn to tilt her head back, which she can, > she will be fine. As of now, her vision seems fine. She does open > one eye more that the other. I'd like to get a second opinion and > would be willing to take her anywhere there is a MD who specializes > in BPES, or is more familiar with it. We live in East TN. Is there > anyone in the group who has a MD in TN, KY, GA, NC, or SC?> I have learned a lot from this group, read the posts almost every > day. I appreciate your support you all have for each other. It is > really difficult to deal with this some days. She is the first in our > family. She is a beautiful little girl, so happy and developing > fine. She is our little miracle as it took us 3 years to have her! I > just

want to do all that I can for her.> Thanks a lot!

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OH I feel bad for Ethan ! SOrry accidents happen ( and to us all the time !) Hope he is feeling better soon............. HUGS Ethan! leah Forsyth <leahs_male@...> wrote:

HI all .. tis Leah here from Hastings , NewZealand.. I have Ethan with BPES whose 6, he had his surgery at 2 years. I found a msjor problem with him having to tilt his head to see because they are seeing that eye level stuff they cannot also see the ground where they are walking as well and continually trip over anything left on the ground. I also agree that it MUST sooner or later affect their neck etc and not to mention that it poses more of a self conscious look when in the company of other children. I thinkyou should be pushing for the surgery to be done within the first 5 years if you can especially before your darling starts school. I havent posted a note for ages but read all the posts every day. Ethan still has his problem with low muscle tone and is still in nappies which i am finding VERY tiresome. He had a little accident also yesterday whilst in the care of his Dad. His Dad was swinging a plastic bat to hit a swingball and copped Ethan fair

and square in the right eye. So he has a cut down the side of his eye, cannot open the eye which is swollen up like a golf ball, so today we went for xrays to see if any damage has been done to the eye, hopefully when we get the xrays back from the specialist all will be ok. But it makes life rather hard for him trying to just use the one eye, which is also his lazy eye!!! the only benefit is that hopefully it will strngthen the lazy eye somewot. Life is fun here!!!

Well must away. You are a great network of support for each other and i feel very proud to belong to such a caring, kind group.

Re: blepharophimosis Re: Daughter with BPES

Tilting there heads back for so long ....WILL LEAD TO MAJOR BACK AND NECK PROBLEMS IN THE FUTURE...seek other advice on that. bethgordon03 <bethgordon03@...> wrote: I live in VA. My daughter is 14 months, I am 35. Tilting the head back is really hard to "unlearn".> I've been reading the posts since my daughter was born in March > 2005. She did not open her eyes at all until she was about a week > old. We took her to a Pediatric Opth. and he didn't tell us much > except that she had blepharophimosis which was a fancy word for small > eye openings. I immediately went home and starting searching on the > internet and have learned a lot since then. We took her back when > she was 5mths and I went with a copy of an article on BPES and > asked "Does she have this". Of course he

said yes, but he actually > recommends no treatment until she is 12 or 13 yrs old. He basically > said as long as she can learn to tilt her head back, which she can, > she will be fine. As of now, her vision seems fine. She does open > one eye more that the other. I'd like to get a second opinion and > would be willing to take her anywhere there is a MD who specializes > in BPES, or is more familiar with it. We live in East TN. Is there > anyone in the group who has a MD in TN, KY, GA, NC, or SC?> I have learned a lot from this group, read the posts almost every > day. I appreciate your support you all have for each other. It is > really difficult to deal with this some days. She is the first in our > family. She is a beautiful little girl, so happy and developing > fine. She is our little miracle as it took us 3 years to have her! I > just

want to do all that I can for her.> Thanks a lot!

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Hi Amy:

I live in Tallahassee, FL and my 13-month old son Rowan was diagnosed with BPES at 5 months old (the first in our family also). We knew there were issues at birth but it took us a while to get in to see a geneticist. My best advice to you is to use your maternal, gut instinct and don't quit until you believe you've gotten enough information and satisfactory answers from opthalmologists and surgeons. Rowan's vision is not compromised in the left eye (moderate ptosis), but the ptosis is a bit severe in the right eye. Our local ped. opthalmologist told us he needed surgery right away so we went in search of the right surgeon AND a 2nd opinion from an opthalmologist with experience treating BPES patients. Not every doctor (both opthalmologist sand surgeons) agreed to the urgency of the situation, but we had to go with our instinct that he had to have the surgery. Some doctors said that as long as he was tilting his head back he'd be okay. Other doctors said that tilting the head back can be good because it means he is finding a way to use the eye thereby not "shutting down" the eye or jeopardizing vision in the eye, but the down side is that it is very taxing on his neck and back and can have long-term ramifications. As sometime else mentioned, kids can have great difficulty walking because they can't see straight ahead of them and start running into things and injuring themselves.

Rowan had bi-lateral ptosis surgery in July after we found a surgeon we liked in ville, FL. Problem is, the right eyelid did not get raised high enough (again there is a difference in opinion in the outcome of the surgery between doctors). Rowan saw his local opthalmologist last week at 2 months post-op. He confirmed what I had believed and said there was no improvement as a result of the surgery and that it must be repeated soon. Essentially we are back a square one. We went to see the opthalmoligist and surgeon in ville and they said "well, it's a close call" and didn't feel it was urgent. My husband and I have decided to go see another oculoplastic surgeon at Emory Eye Clinic (Dr. Ted Wojno, Emory University) in Atlanta on Wednesday to see what he has to say and see if we should consider changing surgeons. We know he's currently treating families who have BPES (like 3 generations) and has experience operating on BPES patients of all ages. I see on the paperwork here that there are 2 pediatric ophthalmologists Dr. Amy Hutchinson and Dr. Lambert who are part of the team. I'll ask Dr. Wojno about them and I'd be happy to give you an update once we return from Atlanta if you're interested.

One more thing, I have noticed that people who communicate here also have differing opinions about when they want their kids or themselves to have surgery that isn't considered "urgent". For example, I want my son to have the canthoplasty surgery around 3 or 4 years of age which is about the earliest doctors want to perform the surgery. It will open up his eyes more and give him a more "natural" appearance. Some parents want to wait and let their kids decide for themselves whether or not to have it. It is an individual decision. Once you see a "before" and "after" picture of what the possibilities are you may be as encouraged as I was.

Best wishes,

Kim

-------------- Original message -------------- I've been reading the posts since my daughter was born in March 2005. She did not open her eyes at all until she was about a week old. We took her to a Pediatric Opth. and he didn't tell us much except that she had blepharophimosis which was a fancy word for small eye openings. I immediately went home and starting searching on the internet and have learned a lot since then. We took her back when she was 5mths and I went with a copy of an article on BPES and asked "Does she have this". Of course he said yes, but he actually recommends no treatment until she is 12 or 13 yrs old. He basically said as long as she can learn to tilt her head back, which she can, she will be fine. As of now, her vision seems fine. She does open one eye more that the other. I'd like to get a second opinion and would be willing to take her anywhere there is a MD who specializes in BPES, or is more familiar with it. We live in East TN. Is there anyone in the group who has a MD in TN, KY, GA, NC, or SC?I have learned a lot from this group, read the posts almost every day. I appreciate your support you all have for each other. It is really difficult to deal with this some days. She is the first in our family. She is a beautiful little girl, so happy and developing fine. She is our little miracle as it took us 3 years to have her! I just want to do all that I can for her.Thanks a lot!

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Hi there, again more opinions please. I have taken Malenah to only one Doctor, i have a good feeling about him, should i get a second opinion. What's your thoughts. We live in Escondido California, that's near San Diego. Anyone in our neck of the woods that can lead us to a good ophthalmologist, or , i just had this thought, is there a better specialty Dr that i should be going through. Boy, i don't know why i never thought of that.

kk

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When I was interviewing medical staff to find a surgeon for my son, I

mercilessly grilled about half a dozen ophthalmic surgeons until I was

comfortable that I'd found the best one for the job. So, by all means

get a second opinion if you're not sure, or a third and a fourth or

more; it's not just their opinions we want, though - also look for

skills and experience and attitude.

As for the flavours of medical staff: perhaps try occuloplastic

surgeons, ophthalmic surgeons, plastic surgeons - especially with

paediatric experience or specialisation.

Rob W

mieritz7@... wrote:

> Hi there, again more opinions please. I have taken Malenah to only

> one Doctor, i have a good feeling about him, should i get a second

> opinion. What's your thoughts. We live in Escondido California,

> that's near San Diego. Anyone in our neck of the woods that can lead

> us to a good ophthalmologist, or , i just had this thought, is there

> a better specialty Dr that i should be going through. Boy, i don't

> know why i never thought of that. kk

>

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Amy:

I returned from Atlanta last night and the trip was well worth it! We spent about 30 minutes with Dr. Ted Wojno (pronounced Vorno) who is one of two oculoplastic surgeons at the Emory Eye Clinic. The other surgeon is Dr. Bernardino whom we did not meet but was told by the nurse that he sees a lot of pediatric patients (I assumed she meant more than Dr. Wojno). He answered our questions which is helping us determine whether or not we believe we should go forward with another surgery for Rowan to get his right lid higher. While we were there he suggested that we meet with Dr. Amy Hutchinson, pediatric ophthalmologist, so that she could exam Rowan and comment on his need for immediate surgery. Seeing her felt like hitting the jackpot. She was fantastic in my opinion. When Rob talked of getting more out of a consultation other than an opinion he was right on. We have met and consulted with 4 surgeons and 3 pediatric ophthalmologists and so far and she gets the "best all around" vote from me. She answered our questions, provided insightful information, had great communications skills, had a calm and respectful demeanor and, according to her, has seen a number of BPES cases. I highly recommend her to anyone who may be looking for a competent doctor in the area. I mentioned your situation to her ("no big deal" comment) and she would be happy to see . It has been my experience every time that when I call an office and tell them my son has BPES and needs a consultation asap they work us in the schedule within a week or two. The number for appointments is 404-778-5522.

Both Dr. Wojno and Dr. Hutchinson agreed that they don't feel it's urgent to repeat Rowan's surgery and believe he can wait until a later date which supports what the doctors in ville have stated. At this point I have some follow up questions for our ped. ophthalmologist in Tallahassee and the doctors in ville before we make a final decision, but I'm leaning towards waiting.

Please feel free to e-mail me directly if you'd like to know any more specifics about our appointment and what I learned while we were there. I was in your shoes just 6 short months ago and know that overwelming feeling of recognizing how much there is to learn and wanting to know it all NOW. Unfortunately it doesn't work that way. You do your homework, ask questions and more questions and consult until you're comfortable with an action plan - it's working for me but it has taken a little time.

-------------- Original message -------------- I've been reading the posts since my daughter was born in March 2005. She did not open her eyes at all until she was about a week old. We took her to a Pediatric Opth. and he didn't tell us much except that she had blepharophimosis which was a fancy word for small eye openings. I immediately went home and starting searching on the internet and have learned a lot since then. We took her back when she was 5mths and I went with a copy of an article on BPES and asked "Does she have this". Of course he said yes, but he actually recommends no treatment until she is 12 or 13 yrs old. He basically said as long as she can learn to tilt her head back, which she can, she will be fine. As of now, her vision seems fine. She does open one eye more that the other. I'd like to get a second opinion and would be willing to take her anywhere there is a MD who specializes in BPES, or is more familiar with it. We live in East TN. Is there anyone in the group who has a MD in TN, KY, GA, NC, or SC?I have learned a lot from this group, read the posts almost every day. I appreciate your support you all have for each other. It is really difficult to deal with this some days. She is the first in our family. She is a beautiful little girl, so happy and developing fine. She is our little miracle as it took us 3 years to have her! I just want to do all that I can for her.Thanks a lot!

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Kim:

Thank you so much for your update. It sounds like it was a

successful trip. Doesn't it feel good when you find that " right "

physician. That is the way I felt when I was looking for an OB

doctor. It seems that you just leave with a " peace " about

everything. I am so glad that you got to see both doctors too. I am

thinking about what to do.. I definately want to get a second

opinion. I am just mostly concerned about how all of this will effect

her vision in the future. It is so good to know there is a group

that is familar with BPES close by. Do you have a picture posted of

Rowan on this site? I don't have one of , not sure how to do

that.

Keep us posted on your decisions....I'd post more, but I need to get

to work!

Amy

> Amy:

>

> I returned from Atlanta last night and the trip was well worth it!

We spent about 30 minutes with Dr. Ted Wojno (pronounced Vorno) who

is one of two oculoplastic surgeons at the Emory Eye Clinic. The

other surgeon is Dr. Bernardino whom we did not meet but was

told by the nurse that he sees a lot of pediatric patients (I assumed

she meant more than Dr. Wojno). He answered our questions which is

helping us determine whether or not we believe we should go forward

with another surgery for Rowan to get his right lid higher. While we

were there he suggested that we meet with Dr. Amy Hutchinson,

pediatric ophthalmologist, so that she could exam Rowan and comment

on his need for immediate surgery. Seeing her felt like hitting the

jackpot. She was fantastic in my opinion. When Rob talked of

getting more out of a consultation other than an opinion he was right

on. We have met and consulted with 4 surgeons and 3 pediatric

ophthalmologists and so far and she gets the " best all around " vote

from me. She answered our questions, provided insightful

information, had great communications skills, had a calm and

respectful demeanor and, according to her, has seen a number of BPES

cases. I highly recommend her to anyone who may be looking for a

competent doctor in the area. I mentioned your situation to her ( " no

big deal " comment) and she would be happy to see . It has been

my experience every time that when I call an office and tell them my

son has BPES and needs a consultation asap they work us in the

schedule within a week or two. The number for appointments is 404-

778-5522.

>

> Both Dr. Wojno and Dr. Hutchinson agreed that they don't feel it's

urgent to repeat Rowan's surgery and believe he can wait until a

later date which supports what the doctors in ville have

stated. At this point I have some follow up questions for our ped.

ophthalmologist in Tallahassee and the doctors in ville before

we make a final decision, but I'm leaning towards waiting.

>

> Please feel free to e-mail me directly if you'd like to know any

more specifics about our appointment and what I learned while we were

there. I was in your shoes just 6 short months ago and know that

overwelming feeling of recognizing how much there is to learn and

wanting to know it all NOW. Unfortunately it doesn't work that way.

You do your homework, ask questions and more questions and consult

until you're comfortable with an action plan - it's working for me

but it has taken a little time.

> -------------- Original message --------------

> I've been reading the posts since my daughter was born in March

> 2005. She did not open her eyes at all until she was about a week

> old. We took her to a Pediatric Opth. and he didn't tell us much

> except that she had blepharophimosis which was a fancy word for

small

> eye openings. I immediately went home and starting searching on

the

> internet and have learned a lot since then. We took her back when

> she was 5mths and I went with a copy of an article on BPES and

> asked " Does she have this " . Of course he said yes, but he actually

> recommends no treatment until she is 12 or 13 yrs old. He basically

> said as long as she can learn to tilt her head back, which she can,

> she will be fine. As of now, her vision seems fine. She does open

> one eye more that the other. I'd like to get a second opinion and

> would be willing to take her anywhere there is a MD who specializes

> in BPES, or is more familiar with it. We live in East TN. Is

there

> anyone in the group who has a MD in TN, KY, GA, NC, or SC?

> I have learned a lot from this group, read the posts almost every

> day. I appreciate your support you all have for each other. It is

> really difficult to deal with this some days. She is the first in

our

> family. She is a beautiful little girl, so happy and developing

> fine. She is our little miracle as it took us 3 years to have her!

I

> just want to do all that I can for her.

> Thanks a lot!

>

>

>

>

>

>

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