Re: Please I need help on BPES

[Guest guest]

Hi,

the best possible thing to do is get a second opinion. Many doctors are not familiar with BPES and when an operation is done depends on the individual case. Our son was operated on at 6months of age.

Best of luck,

Emalee Barrow

CO, USA

From: Olubusayo <busayoyinka@...>Subject: blepharophimosis Please I need help on BPESblepharophimosis Date: Monday, September 6, 2010, 7:33 AM

Hello,Am a new member and I live in Nigeria, I just had my first baby about 2months ago. he's been diagonised for BPES. The Ophtamologist said he can see after some minor test, she said my baby has BPES but she cannot operate until he is at least one year old but wants me to come in in 2 months time for further test. My fear is will this syndrome not become more complex if I have to wait for one year or more? My baby is already tilting is head backward and have wrinkles on his fore head to get better view, my questions are will this not affect his neck as time goes on? where do you think I can get a better surgery apart from Nigeria (Is it America or UK). Is there a tempoary solution before he is one year old?I will also appreciate if you can let me know all the questions I should ask to understand more about the sydrome and get a better treatment.

[Guest guest]

Hello and welcome to the group,

First congrats on your brand new bundle of joy

You will get varying degrees of advice because everyone's situation is

different, we live in CANADA and my son was diagnosed at 4 weeks old and had his

surgery at 5 weeks old, however his vision was obstructed almost completely (hi

name is Lynden in the photo section)

The next best thing is to get a second, third or even a 4th opinion if that

makes you comfortable, with any syndrome or even sickness, especially

Blepharophimosis you will get many of doctors who never see it or never will so

they do not know too much about it. We were lucky here because our doctor is a

BPES specialist.

Usually the main reason for waiting is because the vision is not obstructed, or

they like to do a certain surgery which requires your child to be a bitr older

(thats all doctor preference)

There is no reason you cannpt go back to the same doctor before you go for a

second opinion and ask these questions

how many Bleph cases have you seen?

How many Bleph cases have you done surgery on

Why do you want to wait?

What sort of surgery do you do

what surgery does my child need

how many surgeries does my child need

I see some surgeons wait and some do surgery early, why is that?

If your doctor who is doing the surgery can answer some of these basic questions

to your satisfaction it might make you feel a bit at ease, especially after

receiving this diagnosis, I know life can be a whirlwind and I know some people

want to get it " fixed " asap

If you have any more questions don' hesitate to ask as there are many many

people in this group that are very current with BPES and some of us are medical

professionals (myself included) so we can help break down some of that medical

talk if you need.

Tonikka (Lynden)

Edmonton Alberta CANADA

>

> Hello,

>

> Am a new member and I live in Nigeria, I just had my first baby about 2months

ago. he's been diagonised for BPES.

>

> The Ophtamologist said he can see after some minor test, she said my baby has

BPES but she cannot operate until he is at least one year old but wants me to

come in in 2 months time for further test. My fear is will this syndrome not

become more complex if I have to wait for one year or more? My baby is already

tilting is head backward and have wrinkles on his fore head to get better view,

my questions are will this not affect his neck as time goes on? where do you

think I can get a better surgery apart from Nigeria (Is it America or UK). Is

there a tempoary solution before he is one year old?

>

> I will also appreciate if you can let me know all the questions I should ask

to understand more about the sydrome and get a better treatment.

>

[Guest guest]

Hi,

My daughter had surgery in April at the age af 3 1/2. the first dr that we saw when she was born wanted to do surgery when she was just a newborn like 5 days old, we were not confertable with this because we knew her daddy didn't have surgery until 3, so we went and got a 2nd opinion. The Dr she sees now said that he didn't recommend surgery at such an early age because the facial muscles would mature and grow so much over the first years of her life that, she would just have to have the same surgery again when she got older so we opted to wait. she had her eyes widened and some temp slings put in in April because her eyesight was starting to be affected. She will have a 2nd surgery this spring/summer as the permit fix and the temp slings will be replaced with muscle from her leg. Last year she was not big enough to take muscle from her leg (She is very tiny for her age). hopefully this helps, waiting is not for every child but it is best for some and is an option to speak with your Dr about. My daughter just turned 4 and she is happy and doing well her eyesight has already improved!

blepharophimosis From: emaleebarrow@...Date: Mon, 6 Sep 2010 08:59:22 -0700Subject: Re: blepharophimosis Please I need help on BPES

Hi,

the best possible thing to do is get a second opinion. Many doctors are not familiar with BPES and when an operation is done depends on the individual case. Our son was operated on at 6months of age.

Best of luck,

Emalee Barrow

CO, USA

From: Olubusayo <busayoyinka@...>Subject: blepharophimosis Please I need help on BPESblepharophimosis Date: Monday, September 6, 2010, 7:33 AM

Hello,Am a new member and I live in Nigeria, I just had my first baby about 2months ago. he's been diagonised for BPES. The Ophtamologist said he can see after some minor test, she said my baby has BPES but she cannot operate until he is at least one year old but wants me to come in in 2 months time for further test. My fear is will this syndrome not become more complex if I have to wait for one year or more? My baby is already tilting is head backward and have wrinkles on his fore head to get better view, my questions are will this not affect his neck as time goes on? where do you think I can get a better surgery apart from Nigeria (Is it America or UK). Is there a tempoary solution before he is one year old?I will also appreciate if you can let me know all the questions I should ask to understand more about the sydrome and get a better treatment.

[Guest guest]

Thanks ,

Am a bit confuse, are you saying I should wait till like he is 3 yrs before getting surgeon to do a temporary surgery so that he can see clearly or I should get that done and wait till he is like 3yrs before the full surgery is done?

Regards,Busayo

From: Barga <hbarga@...>blepharophimosis Sent: Tue, September 7, 2010 2:35:22 PMSubject: RE: blepharophimosis Please I need help on BPES

Hi,My daughter had surgery in April at the age af 3 1/2. the first dr that we saw when she was born wanted to do surgery when she was just a newborn like 5 days old, we were not confertable with this because we knew her daddy didn't have surgery until 3, so we went and got a 2nd opinion. The Dr she sees now said that he didn't recommend surgery at such an early age because the facial muscles would mature and grow so much over the first years of her life that, she would just have to have the same surgery again when she got older so we opted to wait. she had her eyes widened and some temp slings put in in April because her eyesight was starting to be affected. She will have a 2nd surgery this spring/summer as the permit fix and the temp slings will be replaced with muscle from her leg. Last year she was not big enough to take muscle from her leg (She is very tiny for her age). hopefully this helps, waiting is not for every child but

it is best for some and is an option to speak with your Dr about. My daughter just turned 4 and she is happy and doing well her eyesight has already improved!

blepharophimosis From: emaleebarrow@...Date: Mon, 6 Sep 2010 08:59:22 -0700Subject: Re: blepharophimosis Please I need help on BPES

Hi,

the best possible thing to do is get a second opinion. Many doctors are not familiar with BPES and when an operation is done depends on the individual case. Our son was operated on at 6months of age.

Best of luck,

Emalee Barrow

CO, USA

From: Olubusayo <busayoyinka@...>Subject: blepharophimosis Please I need help on BPESblepharophimosis Date: Monday, September 6, 2010, 7:33 AM

Hello,Am a new member and I live in Nigeria, I just had my first baby about 2months ago. he's been diagonised for BPES. The Ophtamologist said he can see after some minor test, she said my baby has BPES but she cannot operate until he is at least one year old but wants me to come in in 2 months time for further test. My fear is will this syndrome not become more complex if I have to wait for one year or more? My baby is already tilting is head backward and have wrinkles on his fore head to get better view, my questions are will this not affect his neck as time goes on? where do you think I can get a better surgery apart from Nigeria (Is it America or UK). Is there a tempoary solution before he is one year old?I will also appreciate if you can let me know all the questions I should ask to understand more about the sydrome and get a better treatment.

[Guest guest]

Thanks ,

Am a bit confuse, are you saying I should wait till like he is 3 yrs before getting surgeon to do a temporary surgery so that he can see clearly or I should get that done and wait till he is like 3yrs before the full surgery is done?

Regards,Busayo

From: Barga <hbarga@...>blepharophimosis Sent: Tue, September 7, 2010 2:35:22 PMSubject: RE: blepharophimosis Please I need help on BPES

Hi,My daughter had surgery in April at the age af 3 1/2. the first dr that we saw when she was born wanted to do surgery when she was just a newborn like 5 days old, we were not confertable with this because we knew her daddy didn't have surgery until 3, so we went and got a 2nd opinion. The Dr she sees now said that he didn't recommend surgery at such an early age because the facial muscles would mature and grow so much over the first years of her life that, she would just have to have the same surgery again when she got older so we opted to wait. she had her eyes widened and some temp slings put in in April because her eyesight was starting to be affected. She will have a 2nd surgery this spring/summer as the permit fix and the temp slings will be replaced with muscle from her leg. Last year she was not big enough to take muscle from her leg (She is very tiny for her age). hopefully this helps, waiting is not for every child but

it is best for some and is an option to speak with your Dr about. My daughter just turned 4 and she is happy and doing well her eyesight has already improved!

blepharophimosis From: emaleebarrow@...Date: Mon, 6 Sep 2010 08:59:22 -0700Subject: Re: blepharophimosis Please I need help on BPES

Hi,

the best possible thing to do is get a second opinion. Many doctors are not familiar with BPES and when an operation is done depends on the individual case. Our son was operated on at 6months of age.

Best of luck,

Emalee Barrow

CO, USA

From: Olubusayo <busayoyinka@...>Subject: blepharophimosis Please I need help on BPESblepharophimosis Date: Monday, September 6, 2010, 7:33 AM

Hello,Am a new member and I live in Nigeria, I just had my first baby about 2months ago. he's been diagonised for BPES. The Ophtamologist said he can see after some minor test, she said my baby has BPES but she cannot operate until he is at least one year old but wants me to come in in 2 months time for further test. My fear is will this syndrome not become more complex if I have to wait for one year or more? My baby is already tilting is head backward and have wrinkles on his fore head to get better view, my questions are will this not affect his neck as time goes on? where do you think I can get a better surgery apart from Nigeria (Is it America or UK). Is there a tempoary solution before he is one year old?I will also appreciate if you can let me know all the questions I should ask to understand more about the sydrome and get a better treatment.

[Guest guest]

my Sam didn't have any surgery until she was 3 and neither did her daddy.Sam saw great up until she turned 3 she didn't miss a beat and since her surgery in April the Dr said her eyesight has improved! However all cases are different so i think waiting for surgery is something that needs to be discussed with your surgeon, maybe Sams case isn't as severe as your sons. I just wanted to let you know that waiting could be an option, if you are thinking it is right for your son, you should discuss it with your Dr. I hope this help some

blepharophimosis ; hbarga@...From: busayoyinka@...Date: Mon, 13 Sep 2010 15:05:10 -0700Subject: Re: blepharophimosis Please I need help on BPES

Thanks ,

Am a bit confuse, are you saying I should wait till like he is 3 yrs before getting surgeon to do a temporary surgery so that he can see clearly or I should get that done and wait till he is like 3yrs before the full surgery is done?

Regards,Busayo

From: Barga <hbarga@...>blepharophimosis Sent: Tue, September 7, 2010 2:35:22 PMSubject: RE: blepharophimosis Please I need help on BPES

Hi,My daughter had surgery in April at the age af 3 1/2. the first dr that we saw when she was born wanted to do surgery when she was just a newborn like 5 days old, we were not confertable with this because we knew her daddy didn't have surgery until 3, so we went and got a 2nd opinion. The Dr she sees now said that he didn't recommend surgery at such an early age because the facial muscles would mature and grow so much over the first years of her life that, she would just have to have the same surgery again when she got older so we opted to wait. she had her eyes widened and some temp slings put in in April because her eyesight was starting to be affected. She will have a 2nd surgery this spring/summer as the permit fix and the temp slings will be replaced with muscle from her leg. Last year she was not big enough to take muscle from her leg (She is very tiny for her age). hopefully this helps, waiting is not for every child but it is best for some and is an option to speak with your Dr about. My daughter just turned 4 and she is happy and doing well her eyesight has already improved!

blepharophimosis From: emaleebarrow@...Date: Mon, 6 Sep 2010 08:59:22 -0700Subject: Re: blepharophimosis Please I need help on BPES

Hi,

the best possible thing to do is get a second opinion. Many doctors are not familiar with BPES and when an operation is done depends on the individual case. Our son was operated on at 6months of age.

Best of luck,

Emalee Barrow

CO, USA

From: Olubusayo <busayoyinka@...>Subject: blepharophimosis Please I need help on BPESblepharophimosis Date: Monday, September 6, 2010, 7:33 AM

Hello,Am a new member and I live in Nigeria, I just had my first baby about 2months ago. he's been diagonised for BPES. The Ophtamologist said he can see after some minor test, she said my baby has BPES but she cannot operate until he is at least one year old but wants me to come in in 2 months time for further test. My fear is will this syndrome not become more complex if I have to wait for one year or more? My baby is already tilting is head backward and have wrinkles on his fore head to get better view, my questions are will this not affect his neck as time goes on? where do you think I can get a better surgery apart from Nigeria (Is it America or UK). Is there a tempoary solution before he is one year old?I will also appreciate if you can let me know all the questions I should ask to understand more about the sydrome and get a better treatment.

[Guest guest]

is absolutely right -- every case is different even within each family. It usually depends on how severly the vision is impeded. My husband's father didn't have surgery until he was 3, my husband had his first surgery at 9 months, and our son had his surgery at 6 weeks. In our son's case, he could hardly open his eyes at all and his pupils were not being exposed to light. My husband was able to tilt his head back to see enough before he had surgery. We were told even before my son's surgery that he will be needing to have the slings replaced around age 4, but we could not wait until he was older to have the first surgery. It is a very big decision, but it is something that the surgeons and eye doctors will have to decide with you.

Heidi

From: Barga <hbarga@...>blepharophimosis Sent: Mon, September 13, 2010 8:21:12 PMSubject: RE: blepharophimosis Please I need help on BPES

my Sam didn't have any surgery until she was 3 and neither did her daddy.Sam saw great up until she turned 3 she didn't miss a beat and since her surgery in April the Dr said her eyesight has improved! However all cases are different so i think waiting for surgery is something that needs to be discussed with your surgeon, maybe Sams case isn't as severe as your sons. I just wanted to let you know that waiting could be an option, if you are thinking it is right for your son, you should discuss it with your Dr. I hope this help some

blepharophimosis ; hbarga@...From: busayoyinka@...Date: Mon, 13 Sep 2010 15:05:10 -0700Subject: Re: blepharophimosis Please I need help on BPES

Thanks ,

Am a bit confuse, are you saying I should wait till like he is 3 yrs before getting surgeon to do a temporary surgery so that he can see clearly or I should get that done and wait till he is like 3yrs before the full surgery is done?

Regards,Busayo

From: Barga <hbarga@...>blepharophimosis Sent: Tue, September 7, 2010 2:35:22 PMSubject: RE: blepharophimosis Please I need help on BPES Hi,My daughter had surgery in April at the age af 3 1/2. the first dr that we saw when she was born wanted to do surgery when she was just a newborn like 5 days old, we were not confertable with this because we knew her daddy didn't have surgery until 3, so we went and got a 2nd opinion. The Dr she sees now said that he didn't recommend surgery at such an early age because the facial muscles would mature and grow so much over the first years of her life that, she would just have to have the same surgery again when she got older so we opted to wait. she had her eyes widened and some temp slings put in in April because her eyesight was starting to be affected. She will have a 2nd surgery this spring/summer as the permit fix and the temp slings will be replaced with muscle from her leg. Last year she was not big enough to take muscle from her leg (She is very tiny for her age). hopefully this helps, waiting is not

for every child but it is best for some and is an option to speak with your Dr about. My daughter just turned 4 and she is happy and doing well her eyesight has already improved!

blepharophimosis From: emaleebarrow@...Date: Mon, 6 Sep 2010 08:59:22 -0700Subject: Re: blepharophimosis Please I need help on BPES

Hi,

the best possible thing to do is get a second opinion. Many doctors are not familiar with BPES and when an operation is done depends on the individual case. Our son was operated on at 6months of age.

Best of luck,

Emalee Barrow

CO, USA

From: Olubusayo <busayoyinka@...>Subject: blepharophimosis Please I need help on BPESblepharophimosis Date: Monday, September 6, 2010, 7:33 AM

Hello,Am a new member and I live in Nigeria, I just had my first baby about 2months ago. he's been diagonised for BPES. The Ophtamologist said he can see after some minor test, she said my baby has BPES but she cannot operate until he is at least one year old but wants me to come in in 2 months time for further test. My fear is will this syndrome not become more complex if I have to wait for one year or more? My baby is already tilting is head backward and have wrinkles on his fore head to get better view, my questions are will this not affect his neck as time goes on? where do you think I can get a better surgery apart from Nigeria (Is it America or UK). Is there a tempoary solution before he is one year old?I will also appreciate if you can let me know all the questions I should ask to understand more about the sydrome and get a better treatment.

[Guest guest]

Dear Heidi

I have no idea why your post

(below) got stuck in a spam folder. I only just saw it.

Sorry if you were a bit

puzzled about its lack of appearance.

Regards

Shireen

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of Heidi Dembowski

Sent: 17 September 2010 15:58

blepharophimosis

Subject: Re: blepharophimosis Please I need help on BPES

is

absolutely right -- every case is different even within each family. It usually

depends on how severly the vision is impeded. My husband's father didn't have

surgery until he was 3, my husband had his first surgery at 9 months, and our

son had his surgery at 6 weeks. In our son's case, he could hardly open his

eyes at all and his pupils were not being exposed to light. My husband was able

to tilt his head back to see enough before he had surgery. We were told even

before my son's surgery that he will be needing to have the slings replaced

around age 4, but we could not wait until he was older to have the first

surgery. It is a very big decision, but it is something that the surgeons and

eye doctors will have to decide with you.

Heidi

From: Barga

<hbarga@...>

blepharophimosis

Sent: Mon, September 13, 2010 8:21:12 PM

Subject: RE: blepharophimosis Please I need help on BPES

my Sam didn't have any surgery until she was 3 and neither did her

daddy.Sam saw great up until she turned 3 she didn't miss a beat and

since her surgery in April the Dr said her eyesight has improved!

However all cases are different so i think waiting for surgery

is something that needs to be discussed with your surgeon, maybe Sams

case isn't as severe as your sons. I just wanted to let you know that

waiting could be an option, if you are thinking it is right for your

son, you should discuss it with your Dr. I hope this help some

To:

blepharophimosis ; hbarga@...

From: busayoyinka@...

Date: Mon, 13 Sep 2010 15:05:10 -0700

Subject: Re: blepharophimosis Please I need help on BPES

Thanks

,

Am a bit confuse,

are you saying I should wait till like he is 3 yrs before getting surgeon to do

a temporary surgery so that he can see clearly or I should get that done

and wait till he is like 3yrs before the full surgery is done?

Regards,

Busayo

From: Barga

<hbarga@...>

blepharophimosis

Sent: Tue, September 7, 2010 2:35:22 PM

Subject: RE: blepharophimosis Please I need help on BPES

Hi,

My daughter had surgery in April at the age af 3 1/2. the first dr that we saw

when she was born wanted to do surgery when she was just a newborn like 5 days

old, we were not confertable with this because we knew her daddy didn't have

surgery until 3, so we went and got a 2nd opinion. The Dr she sees now said

that he didn't recommend surgery at such an early age because the facial

muscles would mature and grow so much over the first years of her life that,

she would just have to have the same surgery again when she got older so

we opted to wait. she had her eyes widened and some temp slings put in in April

because her eyesight was starting to be affected. She will have a 2nd

surgery this spring/summer as the permit fix and the temp slings will be

replaced with muscle from her leg. Last year she was not big enough to take

muscle from her leg (She is very tiny for her age). hopefully this helps,

waiting is not for every child but it is best for some and is an option

to speak with your Dr about. My daughter just turned 4 and she is happy and

doing well her eyesight has already improved!

To:

blepharophimosis

From: emaleebarrow@...

Date: Mon, 6 Sep 2010 08:59:22 -0700

Subject: Re: blepharophimosis Please I need help on BPES

Hi,

the best possible thing to do is get a second

opinion. Many doctors are not familiar with BPES and when an operation

is done depends on the individual case. Our son was operated on at

6months of age.

Best of luck,

Emalee Barrow

CO, USA

--- On Mon, 9/6/10, Olubusayo <busayoyinka@...>

wrote:

From: Olubusayo <busayoyinka@...>

Subject: blepharophimosis Please I need help on BPES

blepharophimosis

Date: Monday, September 6, 2010, 7:33 AM

Hello,

Am a new member and I live in Nigeria, I just had my first baby about 2months

ago. he's been diagonised for BPES.

The Ophtamologist said he can see after some minor test, she said my baby has

BPES but she cannot operate until he is at least one year old but wants me to

come in in 2 months time for further test. My fear is will this syndrome not

become more complex if I have to wait for one year or more? My baby is

already tilting is head backward and have wrinkles on his fore head to get

better view, my questions are will this not affect his neck as time goes on?

where do you think I can get a better surgery apart from Nigeria (Is it

America or UK). Is there a tempoary solution before he is one year old?

I will also appreciate if you can let me know all the questions I should ask

to understand more about the sydrome and get a better treatment.