RE: 45 day old baby in Beijing China - advice needed

[Guest guest]

Hi

I think that the questions you are asking require the urgent

attention of a specialist. I have a suggestion for you ...

Have a look at this article:

http://www.emedicine.com/ent/topic97.htm

The author is: Mounir Bashour, MD, CM, FRCS©, PhD, FACS, Assistant

Professor of Ophthalmology, McGill University

I would suggest that you contact Mr Bashour and ask him to suggest a

contact name in Beijing (or as close as possible) for you to get in

touch with.

Here is some information about him:

http://www.cataractmd.ca/dr-mounir-bashour.php

Here is his resumee:

http://www.bashour.com/personal/mounir_cv.htm

and it has contact details and an email address.

I think that if you wrote explaining the circumstances, and sent a

photograph he would be able to either provide you with some

information or put you in touch with somebody.

I don't know him, and have not been in touch with him, but it seems

from what I have read that he is well placed to assist with you with

such questions.

I hope that this helps, do let us know what response you get.

Take care

Shireen Mohandes

London, England

>

>

>

> Dear All,

>

>

>

> We could use a bit of advice. I went to see the Hu Xueyong's baby

> yesterday, and she is gorgeous. From what I can see, she has some

> epicanthis inversus, as well as fairly pronounced ptosis. The

width of her

> eyes is also quite narrow. We are not certain at this point if she

is able

> to open her eyes wide enough to see. As she is dark eyed, and her

eyes are

> quite small, it was difficult to see if her eyelids can be raised

above her

> pupils.

>

>

>

> The doctor that they went to here in Beijing told them that he

cannot test

> the baby's ability to see until she is three months old.

Accordingly, I

> have the following questions that I would appreciate some advice on;

>

>

>

> 1) Can a doctor determine whether a baby under the age of 3

months can

> open their eyes wide enough to see properly?

>

> 2) Are there complications that commonly occur, should the

baby be

> unable to see until it is three months old?

>

> 3) For those of you who had surgery on your baby very early

(i.e.

> within the first 3 months) can you please explain how this decision

to

> operate was arrived at?

>

>

>

> My deepest thanks to everyone for their advice.

>

>

>

> All the best,

>

>

>

> Micah Truman and Hu Xue Yong

>

> Beijing, China

>

[Guest guest]

Thanks for this Shireen. The email will be sent to Dr. Bashour tonight, and

we will see how things progress from there.

Thanks, Micah

blepharophimosis Re: 45 day old baby in Beijing China - advice

needed

Hi

I think that the questions you are asking require the urgent

attention of a specialist. I have a suggestion for you ...

Have a look at this article:

http://www.emedicine.com/ent/topic97.htm

The author is: Mounir Bashour, MD, CM, FRCS©, PhD, FACS, Assistant

Professor of Ophthalmology, McGill University

I would suggest that you contact Mr Bashour and ask him to suggest a

contact name in Beijing (or as close as possible) for you to get in

touch with.

Here is some information about him:

http://www.cataractmd.ca/dr-mounir-bashour.php

Here is his resumee:

http://www.bashour.com/personal/mounir_cv.htm

and it has contact details and an email address.

I think that if you wrote explaining the circumstances, and sent a

photograph he would be able to either provide you with some

information or put you in touch with somebody.

I don't know him, and have not been in touch with him, but it seems

from what I have read that he is well placed to assist with you with

such questions.

I hope that this helps, do let us know what response you get.

Take care

Shireen Mohandes

London, England

>

>

>

> Dear All,

>

>

>

> We could use a bit of advice. I went to see the Hu Xueyong's baby

> yesterday, and she is gorgeous. From what I can see, she has some

> epicanthis inversus, as well as fairly pronounced ptosis. The

width of her

> eyes is also quite narrow. We are not certain at this point if she

is able

> to open her eyes wide enough to see. As she is dark eyed, and her

eyes are

> quite small, it was difficult to see if her eyelids can be raised

above her

> pupils.

>

>

>

> The doctor that they went to here in Beijing told them that he

cannot test

> the baby's ability to see until she is three months old.

Accordingly, I

> have the following questions that I would appreciate some advice on;

>

>

>

> 1) Can a doctor determine whether a baby under the age of 3

months can

> open their eyes wide enough to see properly?

>

> 2) Are there complications that commonly occur, should the

baby be

> unable to see until it is three months old?

>

> 3) For those of you who had surgery on your baby very early

(i.e.

> within the first 3 months) can you please explain how this decision

to

> operate was arrived at?

>

>

>

> My deepest thanks to everyone for their advice.

>

>

>

> All the best,

>

>

>

> Micah Truman and Hu Xue Yong

>

> Beijing, China

>

[Guest guest]

Micah,

In my situation, Avery was seen at 6 ½ weeks

and the pediatrician referred me to a specialist.  The specialist diagnosed her

at 7 weeks of age and scheduled her surgery at 3 months.

Hope this helps,

Nicki Venable

From: blepharophimosis

[mailto:blepharophimosis ] On

Behalf Of Micah Truman

Sent: Saturday, December 01, 2007

8:08 PM

To:

blepharophimosis

Subject: blepharophimosis 45 day

old baby in Beijing China - advice needed

Dear All,

We could use

a bit of advice. I went to see the Hu Xueyong’s baby yesterday, and

she is gorgeous. From what I can see, she has some epicanthis inversus,

as well as fairly pronounced ptosis. The width of her eyes is also quite

narrow. We are not certain at this point if she is able to open her eyes

wide enough to see. As she is dark eyed, and her eyes are quite small, it

was difficult to see if her eyelids can be raised above her pupils.

The doctor

that they went to here in Beijing

told them that he cannot test the baby’s ability to see until she is

three months old. Accordingly, I have the following questions that I

would appreciate some advice on;

1) Can a doctor

determine whether a baby under the age of 3 months can open their eyes wide

enough to see properly?

2) Are there

complications that commonly occur, should the baby be unable to see until it is

three months old?

3) For those of

you who had surgery on your baby very early (i.e. within the first 3 months)

can you please explain how this decision to operate was arrived at?

My deepest

thanks to everyone for their advice.

All the best,

Micah Truman

and Hu Xue Yong

Beijing, China

[Guest guest]

Thanks for this Nicki.Quick question - was your baby able to open her eyes and see at all prior to the surgery? If she was not able to see, how was the doctor able to diagnose this?thanks so much,MicahNicki Venable <nicki.venable@...> wrote: Micah, In my situation, Avery was seen at 6 ½ weeks and the pediatrician referred me to a specialist. The specialist diagnosed her at 7 weeks of age and scheduled her surgery at 3 months. Hope this helps, Nicki Venable From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Micah Truman Sent: Saturday, December 01, 2007 8:08 PM blepharophimosis Subject: blepharophimosis 45 day old baby in Beijing China - advice needed Dear All, We could use a bit of advice. I went to see the Hu Xueyong’s baby yesterday, and she is gorgeous. From what I can see, she has some epicanthis inversus, as well as fairly pronounced ptosis. The width of her eyes is also quite narrow. We are not certain at this point if she is able to open her eyes wide enough to see. As she is dark eyed, and her eyes are quite small, it was difficult to see if her eyelids can be raised above her pupils. The doctor that they went to here in Beijing told them that he cannot test the baby’s ability to see until she is three months old. Accordingly, I have the following questions that I would appreciate some advice on; 1) Can a doctor determine whether a baby under the age of 3 months can open their eyes wide enough to see properly? 2) Are there complications that commonly occur, should the baby be unable to see until it is three months old? 3) For those of you who had surgery on your baby very early (i.e. within the first 3 months) can you please explain how this decision to operate was arrived at? My deepest thanks to everyone for their advice. All the best, Micah Truman and Hu Xue Yong Beijing, China

[Guest guest]

Micah,

Avery had difficulty opening her eyes. 

She tilted her head at 7weeks.  Her vision was good; however, the doctor knew

that vision could be a problem for her due to the small openings of her eyes. 

My doctor focused on caution.  Thank goodness that he did…because she has

perfect vision right now.  She has temp slings in right now until she is around

3 years old when they will use the tissue from her leg to replace the temp

material.  If you have any other questions, please just ask!!!!

Nicki

From: blepharophimosis

[mailto:blepharophimosis ] On

Behalf Of Micah Truman

Sent: Monday, December 03, 2007

9:27 AM

To:

blepharophimosis

Subject: RE: blepharophimosis 45

day old baby in Beijing China - advice

needed

Thanks

for this Nicki.

Quick question - was your baby able to open her eyes and see at all prior to

the surgery? If she was not able to see, how was the doctor able to

diagnose this?

thanks so much,

Micah

Nicki Venable

<nicki.venableco (DOT) allen.in.us> wrote:

Micah,

In my situation, Avery was seen at 6 ½

weeks and the pediatrician referred me to a specialist. The specialist

diagnosed her at 7 weeks of age and scheduled her surgery at 3 months.

Hope this helps,

Nick

i Venable

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of Micah Truman

Sent: Saturday, December 01, 2007

8:08 PM

blepharophimosis

Subject:

blepharophimosis 45 day old baby in Beijing

China

- advice needed

Dear All,

We could use a bit of advice. I went to see the Hu

Xueyong’s baby yesterday, and she is gorg! eous. From what I can

see, she has some epicanthis inversus, as well as fairly pronounced

ptosis. The width of her eyes is also quite narrow. We are not certain

at this point if she is able to open her eyes wide enough to see. As she

is dark eyed, and her eyes are quite small, it was difficult to see if her

eyelids can be raised above her pupils.

The doctor that they went to here in Beijing

told them that he cannot test the baby’s ability to see until she is

three months old. Accordingly, I have the following questions that I

would appreciate some advice on;

& nbsp;

1)

Can a doctor determine whether a baby under the age of 3 months can open

their eyes wide enough to see properly?

2)

Are there complications that commonly occur, should the baby be unable

to see until it is three months old?

3)

For those of you who had surgery on your baby very early (i.e. within

the first 3 months) can you please explain how this decision to operate was

arrived at?

My deepest thanks to everyone for their advice.

All the best,

Micah Truman and Hu Xue Yong

Beijing,

China

[Guest guest]

Dear All,

Hu Xueyong has posted pictures of his

little girl on the bleph board - her English name is Sun.  Our concern remains

that we are unable to determine whether Sun can open her eyes enough to see.  As

per Shireen’s suggestion, I have contacted Dr. Bashour, and am waiting

for a response.  In addition, a number of members have contacted us privately

to give advice and encouragement.  I can’t thank you all enough.  We

should know more in about a week, and hopefully Sun’s parents can make

some more definite decisions by then

In the meantime, should any other members

have thoughts or suggestions, they are more than welcome.

All the best, Micah

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Nicki Venable

Sent: Tuesday, December 04, 2007

12:13 AM

blepharophimosis

Subject: RE: blepharophimosis 45

day old baby in Beijing China - advice

needed

Micah,

Avery had difficulty opening her

eyes. She tilted her head at 7weeks. Her vision was good; however,

the doctor knew that vision could be a problem for her due to the small

openings of her eyes. My doctor focused on caution. Thank goodness

that he did…because she has perfect vision right now. She has temp

slings in right now until she is around 3 years old when they will use the

tissue from her leg to replace the temp material. If you have any other

questions, please just ask!!!!

Nicki

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Micah Truman

Sent: Monday, December 03, 2007

9:27 AM

blepharophimosis

Subject: RE: blepharophimosis 45

day old baby in Beijing China - advice needed

Thanks

for this Nicki.

Quick question - was your baby able to open her eyes and see at all prior to

the surgery? If she was not able to see, how was the doctor able to

diagnose this?

thanks so much,

Micah

Nicki Venable

<nicki.venableco (DOT) allen.in.us> wrote:

Micah,

In my situation, Avery was seen at 6 ½

weeks and the pediatrician referred me to a specialist. The specialist

diagnosed her at 7 weeks of age and scheduled her surgery at 3 months.

Hope this helps,

Nick

i Venable

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Micah Truman

Sent: Saturday, December 01, 2007

8:08 PM

blepharophimosis

Subject:

blepharophimosis 45 day old baby in Beijing

China

- advice needed

Dear All,

We could use a bit of advice. I went to see the Hu

Xueyong’s baby yesterday, and she is gorg! eous. From what I can

see, she has some epicanthis inversus, as well as fairly pronounced

ptosis. The width of her eyes is also quite narrow. We are not

certain at this point if she is able to open her eyes wide enough to see.

As she is dark eyed, and her eyes are quite small, it was difficult to see if

her eyelids can be raised above her pupils.

The doctor that they went to here in Beijing

told them that he cannot test the baby’s ability to see until she is

three months old. Accordingly, I have the following questions that I

would appreciate some advice on;

& nbsp;

1)

Can a doctor determine whether a baby under the age of 3 months can open

their eyes wide enough to see properly?

2)

Are there complications that commonly occur, should the baby be unable

to see until it is three months old?

3)

For those of you who had surgery on your baby very early (i.e. within

the first 3 months) can you please explain how this decision to operate was

arrived at?

My deepest thanks to everyone for their advice.

All the best,

Micah Truman and Hu Xue Yong

Beijing,

China

[Guest guest]

hello everybody my name is fabiola and I have a baby with BPES, no definited yet they comented he can have ohdo syndrome but it is not sure, so a question that I have is about the surgery, after this how long the baby can be better, could you please help me and tell me about the doctors, We are from Mexico, and here the doctor says that until the 3 years old favio the baby is one year now. I will appreciate all the help you can give me thank you

fabiola perez

blepharophimosis 45 day old baby in Beijing China - advice needed

Dear All,

We could use a bit of advice. I went to see the Hu Xueyong’s baby yesterday, and she is gorg! eous. From what I can see, she has some epicanthis inversus, as well as fairly pronounced ptosis. The width of her eyes is also quite narrow. We are not certain at this point if she is able to open her eyes wide enough to see. As she is dark eyed, and her eyes are quite small, it was difficult to see if her eyelids can be raised above her pupils.

The doctor that they went to here in Beijing told them that he cannot test the baby’s ability to see until she is three months old. Accordingly, I have the following questions that I would appreciate some advice on;

& nbsp;

1) Can a doctor determine whether a baby under the age of 3 months can open their eyes wide enough to see properly?

2) Are there complications that commonly occur, should the baby be unable to see until it is three months old?

3) For those of you who had surgery on your baby very early (i.e. within the first 3 months) can you please explain how this decision to operate was arrived at?

My deepest thanks to everyone for their advice.

All the best,

Micah Truman and Hu Xue Yong

Beijing , China

Answers - Get better answers from someone who knows. Try

it now.

[Guest guest]

Dear Fabiola

Welcome to the group. The best advice any of us can give you

regarding your question to talk to specialists in the field. Put your efforts

into finding another doctor if you feel you want a second opinion.

I am not medically trained, so I cannot help you with a specific

answer. However, it does seem that the main consideration is for the doctor to

assess the possibility of the baby’s eyesight becoming affected. We are all

different. For some children, or babies, early surgery is essential. For

others, where there is no risk that vision can be affected as a result of the

BPES, surgery is delayed until  the baby is older is often made.

There are two articles you may like to read, or pass on to the

medical professionals who are caring for yourchild:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

and

http://www.emedicine.com/ent/topic97.htm

I know that they can be a bit technical. But if there are parts

that you don’t understand you might like to ask your doctor to explain them to

you.

I live in London, I am nearly 47 years old, I am the only person

in my family with BPES.  Luckily for me,  my vision has not been affected. I

wear glassed, but that is because, like many, people I am a  short-sighted.

Take care Fabiola, and let us know how things go.

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of FABIOLA PEREZ

Sent: 13 December 2007 20:09

blepharophimosis

Subject: Re: blepharophimosis 45 day old baby in Beijing China -

advice needed

hello everybody my name is fabiola and I have a baby with

BPES, no definited yet they comented he can have ohdo syndrome but it is not

sure, so a question that I have is about the surgery, after this how long

the baby can be better, could you please help me and tell me about the doctors,

We are from Mexico, and here the doctor says that until the 3 years old favio

the baby is one year now. I will appreciate all the help you can give me thank

you

fabiola perez

blepharophimosis 45 day old baby in Beijing China - advice

needed

Dear All,

We could use a bit of

advice. I went to see the Hu Xueyong’s baby yesterday, and she is gorg!

eous. From what I can see, she has some epicanthis inversus, as well as

fairly pronounced ptosis. The width of her eyes is also quite

narrow. We are not certain at this point if she is able to open her eyes

wide enough to see. As she is dark eyed, and her eyes are quite small, it

was difficult to see if her eyelids can be raised above her pupils.

The doctor that they

went to here in Beijing told them that he cannot test the baby’s ability to see

until she is three months old. Accordingly, I have the following

questions that I would appreciate some advice on;

& nbsp;

1) Can a doctor

determine whether a baby under the age of 3 months can open their eyes wide

enough to see properly?

2) Are there

complications that commonly occur, should the baby be unable to see until it is

three months old?

3) For those of you who

had surgery on your baby very early (i.e. within the first 3 months) can you

please explain how this decision to operate was arrived at?

My deepest thanks to

everyone for their advice.

All the best,

Micah Truman and Hu

Xue Yong

Beijing , China

Answers - Get better answers from someone who knows. Try

it now.