Re: long term effect of compensations

[Guest guest]

>I am not sure but my daughter had her first surgery when she was 14 months old.

It might be good to maybe get a second opinion. When my daughter was born we

noticed her eyes were different and no one said anything but as she grew her

bottom lids were pulling out away from her eyes. I brought her to a doctor at

the age of 6 months and they said she was fine. My parents insisted that I get

a second opinion so I called an eye doctors and they referred me to a cosmetic

surgeon. We went to this doctor and he did her surgery. The only thing is that

noone has diagnosed her with any disorder until now and she is 12-1/2. No one

seemed concerned especially since her lids are fixed now. Best wishes for you

and your son.

on

From: MacKinnon <jennifer.mackinnon@...>

>Date: 2006/08/15 Tue PM 12:25:58 CDT

>blepharophimosis

>Subject: blepharophimosis long term effect of compensations

>

>Hi, I am new to this site as my 2 month old son, Braydon, was just

>diagnosed with BPES today. They say he won't need surgery until he is

>4 or 5, and that it's good that he's compensating by tilting his head

>backwards to see better. I'm happy that he's able to compensate but

>concerned that 4 or 5 years of holding his head tilted back will cause

>other problems. Can anyone comment on this for me? And after having

>surgery, would the backwards head tilting correct itself or would it

>remain since it would be the only way he's ever held his head?

>Thanks in advance!

>

>Jen

>

>

[Guest guest]

Hi ...

Welcome to the group:) We live in New Zealand and have a 3.5 year son with bleph. He is the first to have it in either side of the family? He has had NO surgeries yet, like you were told, probably not until next year when he is 4 or so....preferrably before school. The teasing is what I am going to have major trouble dealing with:( I get very quick to be defensive when a child at our oldest son's school says something mean to him about his eyes....sometimes when I walk away I start to get tears in my eyes, I hate it! So even though he see's fine, NEVER tilted his head back to see, only raises his forehead and eyebrows, I kind of hope he has an op before he starts school, but on the other hand, his face is what we love about him, it is so angelic and flawless:) His eyes are gorgeous to us:) they are so untouched and perfect, and it scares us to think what his eyes will look like after surgery??? It is very confusing, we just take it year by year, as that is when he see's the opthalmologist.....so far his eyesight is unaffected which is great:) We will visit the Dr next January when he turns 4 years old and see what he says then....Don't be concerned about the head tilting, as I said, Ethan run's around looking straight ahead:) Nothing stops him, he has a 7 year old brother to keep up with:) In saying that though, there are different severitys of bleph-ptosis could be a lot worse in another patient which would force them to tilt there head back to see, this is not our case with Ethan....there are pics of him under Ethan-wearing a pumpkin outfit, check them out:)

Again, welcome to this very informative group:) Any questions you may have will more than likely be answered better here than with a DR, just ask ole ROB WATSON in aussie....he's awesome:)

Leanne and family NZ

-- blepharophimosis long term effect of compensations

Hi, I am new to this site as my 2 month old son, Braydon, was justdiagnosed with BPES today. They say he won't need surgery until he is4 or 5, and that it's good that he's compensating by tilting his headbackwards to see better. I'm happy that he's able to compensate butconcerned that 4 or 5 years of holding his head tilted back will causeother problems. Can anyone comment on this for me? And after havingsurgery, would the backwards head tilting correct itself or would itremain since it would be the only way he's ever held his head?Thanks in advance! Jen

[Guest guest]

Hi Jen,

Our son, Micah, used to tilt his head way back to see.

He had his first, and only, surgery done when he was

2 yrs 10 mos old. The head tilting stopped

immediately after surgery. You can see his pictures

under " Eisele Family " .

Welcome to the group,

April

--- MacKinnon <jennifer.mackinnon@...>

wrote:

> Hi, I am new to this site as my 2 month old son,

> Braydon, was just

> diagnosed with BPES today. They say he won't need

> surgery until he is

> 4 or 5, and that it's good that he's compensating by

> tilting his head

> backwards to see better. I'm happy that he's able

> to compensate but

> concerned that 4 or 5 years of holding his head

> tilted back will cause

> other problems. Can anyone comment on this for me?

> And after having

> surgery, would the backwards head tilting correct

> itself or would it

> remain since it would be the only way he's ever held

> his head?

> Thanks in advance!

>

> Jen

>

>

>

>

__________________________________________________

[Guest guest]

Hi Leanne, Thank you so much for your story. Braydon is the first in our family as well. I'm sorry to hear about the teasing...kids (and adults) can be so cruel! I suppose we'll be crossing that bridge eventually ourselves. I'm hopeful that Braydon will be getting his surgeries completed before he starts school, so when the time comes he looks just like everyone else, although I know what you mean...to us he is incredible and beautiful, and I can imagine that after 3.5 years it would be hard to imagine anything different. Does Ethan understand that his eyes are different? Does he hear the teasing and is he affected by it?JenOn 8/15/06, costellos <tltne@...> wrote:

Hi ...

Welcome to the group:) We live in New Zealand and have a 3.5 year son with bleph. He is the first to have it in either side of the family? He has had NO surgeries yet, like you were told, probably not until next year when he is 4 or so....preferrably before school. The teasing is what I am going to have major trouble dealing with:( I get very quick to be defensive when a child at our oldest son's school says something mean to him about his eyes....sometimes when I walk away I start to get tears in my eyes, I hate it! So even though he see's fine, NEVER tilted his head back to see, only raises his forehead and eyebrows, I kind of hope he has an op before he starts school, but on the other hand, his face is what we love about him, it is so angelic and flawless:) His eyes are gorgeous to us:) they are so untouched and perfect, and it scares us to think what his eyes will look like after surgery??? It is very confusing, we just take it year by year, as that is when he see's the opthalmologist.....so far his eyesight is unaffected which is great:) We will visit the Dr next January when he turns 4 years old and see what he says then....Don't be concerned about the head tilting, as I said, Ethan run's around looking straight ahead:) Nothing stops him, he has a 7 year old brother to keep up with:) In saying that though, there are different severitys of bleph-ptosis could be a lot worse in another patient which would force them to tilt there head back to see, this is not our case with Ethan....there are pics of him under Ethan-wearing a pumpkin outfit, check them out:)

Again, welcome to this very informative group:) Any questions you may have will more than likely be answered better here than with a DR, just ask ole ROB WATSON in aussie....he's awesome:)

Leanne and family NZ

-- blepharophimosis long term effect of compensations

Hi, I am new to this site as my 2 month old son, Braydon, was justdiagnosed with BPES today. They say he won't need surgery until he is4 or 5, and that it's good that he's compensating by tilting his headbackwards to see better. I'm happy that he's able to compensate but

concerned that 4 or 5 years of holding his head tilted back will causeother problems. Can anyone comment on this for me? And after havingsurgery, would the backwards head tilting correct itself or would it

remain since it would be the only way he's ever held his head?Thanks in advance! Jen

[Guest guest]

Thanks April, it's so nice to see a positive outcome. I'm so glad I found this group :)On 8/15/06, april Eisele <

aprileisele@...> wrote:

Hi Jen,

Our son, Micah, used to tilt his head way back to see.

He had his first, and only, surgery done when he was

2 yrs 10 mos old. The head tilting stopped

immediately after surgery. You can see his pictures

under " Eisele Family " .

Welcome to the group,

April

--- MacKinnon <jennifer.mackinnon@...>

wrote:

> Hi, I am new to this site as my 2 month old son,

> Braydon, was just

> diagnosed with BPES today. They say he won't need

> surgery until he is

> 4 or 5, and that it's good that he's compensating by

> tilting his head

> backwards to see better. I'm happy that he's able

> to compensate but

> concerned that 4 or 5 years of holding his head

> tilted back will cause

> other problems. Can anyone comment on this for me?

> And after having

> surgery, would the backwards head tilting correct

> itself or would it

> remain since it would be the only way he's ever held

> his head?

> Thanks in advance!

>

> Jen

>

>

>

>

__________________________________________________

[Guest guest]

My son Aedan 4, after an incedent when a boy in pre school came up to me and Aedan and said "My daddy wants to know who the one with the funny eyes is" Aedan replied "yeah well my mommy's back hurts" (everyones different?) That night he said around the dinner table " im going to make a machine to make my eyes big! like Raina's" (sister). I wrote the daddy and told him to be careful the way he speaks because it can affect people. He got his feathers in a ruffle and left me a nasty message on my machine. I called him on the tele and got across to him in a nice way that what he says had an affect on Aedan'. and to think before he talks. Other times i have spoken to parents in the park about mean things their children were saying " your face looks like a monster and we dont like monsters!" Aedan then growled at them. YEAH this is a tough one for me but in the end it will make us stronger. NYC

[Guest guest]

Hi again ,

When Ethan was a baby and we were walking around malls, people would ALWAYS say *oooh look at him, he's so sleepy* when in fact he was wide awake! Had to laugh, they were innocent comments. Once an Indian guy was looking at him and he looked at me and said in broken english *oh, your husband chinese?* I said no, he actually giggled and thought I was lying, saying nahhh your husband chinese? still smiling at me.....he was actually saying it like I had had an affair with a chinese guy (not saying anything negative about chinese men out there:) I was just shoked that some people can have no shame at what they say! This was another innocent story...We were in a shop and Ethan (been VERY sociable) went up to a stranger and was showing her his *hotwheel car* ( obsessed with cars he is! He was laughing and all excited and the lady turned and said *You better open your eyes or your going to walk into something!* she was smiling while saying it:) another lady with her said, what did you say to that wee boy? She said,Oh, he's walking around with his eyes closed! She actually innocently thought he was...it was cute:) Not so cute, and in fact the worst situation-comment I have dealt with thus far, was again at my older sons school....Ethan again, been Mr friendly, was trying to talk to 2 girls on the playground, they were about 8-9 years old, one of the girls turned to her friend and said *that baby is hideous*!!! and they laughed....WELL, My blood started boiling....I had to hold back the tears while I let them have it....It honestly ruined the next couple of days, I couldn't get over that comment, so yes, kids are definately cruel, and so are adults....we are SO used to the stares, still gets me defensive though....but Ethan is such a friendly little man, with a beautiful nature, he doesn't understand the comments and stares yet, thank god...but we have noticed the last couple months that he looks at himself in the mirror and try's to open his eyes, once or twice he has said to me *my eyes are closed?* I just say, No, they are open! I am dreeding that day as well, when he starts to say stuff about why he looks different! His big brother has huge eyes! I don't ever want him to be *jealous* that he doesn't...Anyways....those are a few of our stories with our lil angel:) Over all Ethans beautiful, HUGE personality is what most people see first, and I hope he can carry that through his life and be a strong, confident young man in the future!

Leanne:)

-- blepharophimosis long term effect of compensations

Hi, I am new to this site as my 2 month old son, Braydon, was justdiagnosed with BPES today. They say he won't need surgery until he is4 or 5, and that it's good that he's compensating by tilting his headbackwards to see better. I'm happy that he's able to compensate but concerned that 4 or 5 years of holding his head tilted back will causeother problems. Can anyone comment on this for me? And after havingsurgery, would the backwards head tilting correct itself or would itremain since it would be the only way he's ever held his head?Thanks in advance! Jen

[Guest guest]

>I would like to add that my daughter is 12 and she wears glasses and they cover

her scars. When she had surgury at 4 people would look at her and kids would

say to their parent what is wrong with that little girl. My daughter would

always respond that she had surgery. She has never complained to me that kids

pick on her because of her eyes. She is pretty open with me about how she is

feeling and what happens at school. To this day she is ok with how she looks and

noone ever notices unless it is pointed out to them. I think growing up with

looking a little different helps her to be ok with who she is even though she is

going into her teens. She is the most caring individual and she is well aware

of other peoples feelings. She wants to care for everyone around her. It is

almost as if she has this amazing skill to compensate for being different. I

love her to pieces and think she is a blessing in disguise and she will make me

happy throughout her life.

From: MacKinnon <jennifer.mackinnon@...>

>Date: 2006/08/15 Tue PM 08:03:22 CDT

>blepharophimosis

>Subject: Re: blepharophimosis long term effect of compensations

>

>Hi Leanne,

>

>  Thank you so much for your story.  Braydon is the first in our family as

well.  I'm sorry to hear about the teasing...kids (and adults) can be so cruel! 

I suppose we'll be crossing that bridge eventually ourselves.  I'm hopeful that

Braydon will be getting his surgeries completed before he starts school, so when

the time comes he looks just like everyone else, although I know what you

mean...to us he is incredible and beautiful, and I can imagine that after 3.5

years it would be hard to imagine anything different.  Does Ethan understand

that his eyes are different?  Does he hear the teasing and is he affected by it?

>

>Jen

>

>

>On 8/15/06, costellos <tltne@...> wrote:

>Hi ... Welcome to the group:) We live in New Zealand and have a 3.5

year son with bleph. He is the first to have it in either side of the family? He

has had NO surgeries yet, like you were told, probably not until next year when

he is 4 or so....preferrably before school. The teasing is what I am going to

have major trouble dealing with:( I get very quick to be defensive when a child

at our oldest son's school says something mean to him about his

eyes....sometimes when I walk away I start to get tears in my eyes, I hate it!

So even though he see's fine, NEVER tilted his head back to see, only raises

his forehead and eyebrows, I kind of hope he has an op before he starts school,

but on the other hand, his face is what we love about him, it is so angelic and

flawless:) His eyes are gorgeous to us:) they are so untouched and perfect, and

it scares us to think what his eyes will look like after surgery??? It is very

confusing, we just take it year by year, as that is when he see's the

opthalmologist.<wbr>....so far his eyesight is unaffected which is great:) We

will visit the Dr next January when he turns 4 years old and see what he says

then....Don't be concerned about the head tilting, as I said, Ethan run's around

looking straight ahead:) Nothing stops him, he has a 7 year old brother to keep

up with:) In saying that though, there are different severitys of bleph-ptosis

could be a lot worse in another patient which would force them to tilt there

head back to see, this is not our case with Ethan....there are pics of him under

Ethan-wearing a pumpkin outfit, check them out:) Again, welcome to this very

informative group:) Any questions you may have will more than likely be answered

better here than with a DR, just ask ole ROB WATSON in aussie....he's

awesome:) Leanne and family NZ  -------Original Message------- From:

MacKinnonDate: 08/16/06 05:47:30blepharophimosis@...:

blepharophimosis long term effect of compensations 

>Hi, I am new to this site as my 2 month old son, Braydon, was just

>diagnosed with BPES today. They say he won't need surgery until he is<br>4 or

5, and that it's good that he's compensating by tilting his head<br>backwards to

see better. I'm happy that he's able to compensate but

>concerned that 4 or 5 years of holding his head tilted back will cause

>other problems. Can anyone comment on this for me? And after having

>surgery, would the backwards head tilting correct itself or would it

>remain since it would be the only way he's ever held his head?

>Thanks in advance!

>

>Jen

>

> 

>

>

>

>

[Guest guest]

Well it sounds like some good can definitely come out of this. As long as we're all strong, Braydon can get an early start on accepting everyone's differences. At 2 months old, the only comment we've heard so far is " Oh what a sleepy boy " but at least those are innocent comments and they just don't know. I can imagine it will get worse, but again we can all grow stronger for it and Braydon will hopefully learn that it's not nice to ever say hurtful things. Thanks again for all your stories, they really do help!!JenOn 8/16/06, <c.jameson@...

> wrote:

>I would like to add that my daughter is 12 and she wears glasses and they cover her scars. When she had surgury at 4 people would look at her and kids would say to their parent what is wrong with that little girl. My daughter would always respond that she had surgery. She has never complained to me that kids pick on her because of her eyes. She is pretty open with me about how she is feeling and what happens at school. To this day she is ok with how she looks and noone ever notices unless it is pointed out to them. I think growing up with looking a little different helps her to be ok with who she is even though she is going into her teens. She is the most caring individual and she is well aware of other peoples feelings. She wants to care for everyone around her. It is almost as if she has this amazing skill to compensate for being different. I love her to pieces and think she is a blessing in disguise and she will make me happy throughout her life.

From: MacKinnon <jennifer.mackinnon@...>

>Date: 2006/08/15 Tue PM 08:03:22 CDT

>blepharophimosis

>Subject: Re: blepharophimosis long term effect of compensations

>

>Hi Leanne,

>

> Thank you so much for your story. Braydon is the first in our family as well. I'm sorry to hear about the teasing...kids (and adults) can be so cruel! I suppose we'll be crossing that bridge eventually ourselves. I'm hopeful that Braydon will be getting his surgeries completed before he starts school, so when the time comes he looks just like everyone else, although I know what you mean...to us he is incredible and beautiful, and I can imagine that after 3.5 years it would be hard to imagine anything different. Does Ethan understand that his eyes are different? Does he hear the teasing and is he affected by it?

>

>Jen

>

>

>On 8/15/06, costellos <tltne@...> wrote:

>Hi ... Welcome to the group:) We live in New Zealand and have a 3.5 year son with bleph. He is the first to have it in either side of the family? He has had NO surgeries yet, like you were told, probably not until next year when he is 4 or so....preferrably before school. The teasing is what I am going to have major trouble dealing with:( I get very quick to be defensive when a child at our oldest son's school says something mean to him about his eyes....sometimes when I walk away I start to get tears in my eyes, I hate it! So even though he see's fine, NEVER tilted his head back to see, only raises his forehead and eyebrows, I kind of hope he has an op before he starts school, but on the other hand, his face is what we love about him, it is so angelic and flawless:) His eyes are gorgeous to us:) they are so untouched and perfect, and it scares us to think what his eyes will look like after surgery??? It is very confusing, we just take it year by year, as that is when he see's the opthalmologist.<wbr>....so far his eyesight is unaffected which is great:) We will visit the Dr next January when he turns 4 years old and see what he says then....Don't be concerned about the head tilting, as I said, Ethan run's around looking straight ahead:) Nothing stops him, he has a 7 year old brother to keep up with:) In saying that though, there are different severitys of bleph-ptosis could be a lot worse in another patient which would force them to tilt there head back to see, this is not our case with Ethan....there are pics of him under Ethan-wearing a pumpkin outfit, check them out:) Again, welcome to this very informative group:) Any questions you may have will more than likely be answered better here than with a DR, just ask ole ROB WATSON in aussie....he's awesome:) Leanne and family NZ -------Original Message------- From: MacKinnonDate: 08/16/06 05:47:30blepharophimosis@...: blepharophimosis long term effect of compensations

>Hi, I am new to this site as my 2 month old son, Braydon, was just

>diagnosed with BPES today. They say he won't need surgery until he is<br>4 or 5, and that it's good that he's compensating by tilting his head<br>backwards to see better. I'm happy that he's able to compensate but

>concerned that 4 or 5 years of holding his head tilted back will cause

>other problems. Can anyone comment on this for me? And after having

>surgery, would the backwards head tilting correct itself or would it

>remain since it would be the only way he's ever held his head?

>Thanks in advance!

>

>Jen

>

>

>

>

>

>

[Guest guest]

Hi all, especially everyone chatting on this thread.

I've not checked the site for a bit as Abbie's been in hospital for

a few days last week - there's been some interesting topics. I can

see I've got some catching up to do.

I'd just like to say thanks Leanne for your comments about your

feelings re: Ethans coming surgery. Abbie was 1 a couple of weeks

ago (but may have her first surgery fairly soon - as it looks like

her bleph is affecting her neck and balance, she tilts her head very

badly and arches her back to see, if she's sitting). When she was

born I was keen for surgery before school for cosmetic reasons as

everyone has been discussing. As times passed I've got more

apprehensive. To me she's beautiful - my perfect girl - and I'm so

worried it will make matters worse. I know she needs it because of

her vision and development so obviously she'll have it just when

they advise us but it's just nice to know I'm not the only one who

sometimes feels that way. I've got an appointment for her now with

Mr Collin as well. In the meantime, Abbie's going to have some

physiotherapy.

On the other subject, I'm also always getting comments like " oh

she's tired " . What really grates on me is when children ask their

parents what's wrong with her and the parents reply that she is

tired when they clearly know that's a lie. Why should I make

excuses for my baby? I feel that much of childrens bullying

behaviour stems from parents reactions to these questions ie:

denying it rather than a reasuring explanation, so the child never

learns that it's ok to be different. I always stop them and say " no

she's not tired, she has an eye condition " , then if it's a child I

will give a gentle explanation and answer any questions or if it's

an adult I change the subject in as friendly way as I can to avoid

them being too embarrassed. Nobody's perfect and the earlier kids

learn that, then the happier and better adjusted they will be. I'm

really hoping that if Abbie grows up with this example she will have

the confidence to handle it herself.

take care everyone,

Leah

> > >Hi ... Welcome to the group:) We live in New Zealand

and have a

> > 3.5 year son with bleph. He is the first to have it in either

side of the

> > family? He has had NO surgeries yet, like you were told,

probably not until

> > next year when he is 4 or so....preferrably before school. The

teasing is

> > what I am going to have major trouble dealing with:( I get very

quick to be

> > defensive when a child at our oldest son's school says something

mean to him

> > about his eyes....sometimes when I walk away I start to get

tears in my

> > eyes, I hate it! So even though he see's fine, NEVER tilted his

head back to

> > see, only raises his forehead and eyebrows, I kind of hope he

has an op

> > before he starts school, but on the other hand, his face is what

we love

> > about him, it is so angelic and flawless:) His eyes are gorgeous

to

> > us:) they are so untouched and perfect, and it scares us to

think what his

> > eyes will look like after surgery??? It is very confusing, we

just take it

> > year by year, as that is when he see's the

opthalmologist.<wbr>....so far

> > his eyesight is unaffected which is great:) We will visit the Dr

next

> > January when he turns 4 years old and see what he says

then....Don't be

> > concerned about the head tilting, as I said, Ethan run's around

looking

> > straight ahead:) Nothing stops him, he has a 7 year old brother

to keep up

> > with:) In saying that though, there are different severitys of

bleph-ptosis

> > could be a lot worse in another patient which would force them

to tilt there

> > head back to see, this is not our case with Ethan....there are

pics of him

> > under Ethan-wearing a pumpkin outfit, check them out:) Again,

welcome to

> > this very informative group:) Any questions you may have will

more than

> > likely be answered better here than with a DR, just ask ole ROB

WATSON in

> > aussie....he's awesome:) Leanne and family NZ -------Original

> > Message------- From: MacKinnonDate: 08/16/06 05:47:30To:

> > blepharophimosis@...<blepharophimosis%40Subject>:

> > blepharophimosis long term effect of compensations

> >

> > >Hi, I am new to this site as my 2 month old son, Braydon, was

just

> > >diagnosed with BPES today. They say he won't need surgery until

he

> > is<br>4 or 5, and that it's good that he's compensating by

tilting his

> > head<br>backwards to see better. I'm happy that he's able to

compensate but

> >

> > >concerned that 4 or 5 years of holding his head tilted back

will cause

> > >other problems. Can anyone comment on this for me? And after

having

> > >surgery, would the backwards head tilting correct itself or

would it

> > >remain since it would be the only way he's ever held his head?

> > >Thanks in advance!

> > >

> > >Jen

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

>

[Guest guest]

Hi

I have BPES and know how uncommon BPES is, the vast majority of people I

meet have never heard of including many doctors.

I have been reading these threads with interest but felt that I had remind

parents of affected children that you must always be aware that people do

not have any idea what it is. Comments that your child is tired are not

made to judge or hurt you or your child but are probably said to stop questions

being asked by their child, after all a total stranger is unlikely to walk

up to you and just ask out right what is the matter are they, I know I wouldn?t.

I guess what I am trying to say is that I know I am hugely embarrassed when

my daughter asks what is wrong with someone when I have no idea and I try

to answer as best I can. You are very brave to talk with a stranger and

explain, but I think that it?s very cool!

When I was little the answers were ?she is blind? so in my eyes ?tired? isn?t

too bad.

Anyway I am 28 now and I am fine; in my experience I wouldn?t let it affect

you too much as I am sure your children will be fine too.

Best of luck

Bryony

>-- Original Message --

>blepharophimosis

>From: " leara27 " <leara27@...>

>Date: Wed, 16 Aug 2006 19:15:31 -0000

>Subject: Re: blepharophimosis long term effect of compensations

>Reply-blepharophimosis

>

>

>Hi all, especially everyone chatting on this thread.

>

>I've not checked the site for a bit as Abbie's been in hospital for

>a few days last week - there's been some interesting topics. I can

>see I've got some catching up to do.

>

>I'd just like to say thanks Leanne for your comments about your

>feelings re: Ethans coming surgery. Abbie was 1 a couple of weeks

>ago (but may have her first surgery fairly soon - as it looks like

>her bleph is affecting her neck and balance, she tilts her head very

>badly and arches her back to see, if she's sitting). When she was

>born I was keen for surgery before school for cosmetic reasons as

>everyone has been discussing. As times passed I've got more

>apprehensive. To me she's beautiful - my perfect girl - and I'm so

>worried it will make matters worse. I know she needs it because of

>her vision and development so obviously she'll have it just when

>they advise us but it's just nice to know I'm not the only one who

>sometimes feels that way. I've got an appointment for her now with

>Mr Collin as well. In the meantime, Abbie's going to have some

>physiotherapy.

>

>On the other subject, I'm also always getting comments like " oh

>she's tired " . What really grates on me is when children ask their

>parents what's wrong with her and the parents reply that she is

>tired when they clearly know that's a lie. Why should I make

>excuses for my baby? I feel that much of childrens bullying

>behaviour stems from parents reactions to these questions ie:

>denying it rather than a reasuring explanation, so the child never

>learns that it's ok to be different. I always stop them and say " no

>she's not tired, she has an eye condition " , then if it's a child I

>will give a gentle explanation and answer any questions or if it's

>an adult I change the subject in as friendly way as I can to avoid

>them being too embarrassed. Nobody's perfect and the earlier kids

>learn that, then the happier and better adjusted they will be. I'm

>really hoping that if Abbie grows up with this example she will have

>the confidence to handle it herself.

>

>take care everyone,

>

>Leah

>

>

>

>> > >Hi ... Welcome to the group:) We live in New Zealand

>and have a

>> > 3.5 year son with bleph. He is the first to have it in either

>side of the

>> > family? He has had NO surgeries yet, like you were told,

>probably not until

>> > next year when he is 4 or so....preferrably before school. The

>teasing is

>> > what I am going to have major trouble dealing with:( I get very

>quick to be

>> > defensive when a child at our oldest son's school says something

>mean to him

>> > about his eyes....sometimes when I walk away I start to get

>tears in my

>> > eyes, I hate it! So even though he see's fine, NEVER tilted his

>head back to

>> > see, only raises his forehead and eyebrows, I kind of hope he

>has an op

>> > before he starts school, but on the other hand, his face is what

>we love

>> > about him, it is so angelic and flawless:) His eyes are gorgeous

>to

>> > us:) they are so untouched and perfect, and it scares us to

>think what his

>> > eyes will look like after surgery??? It is very confusing, we

>just take it

>> > year by year, as that is when he see's the

>opthalmologist.<wbr>....so far

>> > his eyesight is unaffected which is great:) We will visit the Dr

>next

>> > January when he turns 4 years old and see what he says

>then....Don't be

>> > concerned about the head tilting, as I said, Ethan run's around

>looking

>> > straight ahead:) Nothing stops him, he has a 7 year old brother

>to keep up

>> > with:) In saying that though, there are different severitys of

>bleph-ptosis

>> > could be a lot worse in another patient which would force them

>to tilt there

>> > head back to see, this is not our case with Ethan....there are

>pics of him

>> > under Ethan-wearing a pumpkin outfit, check them out:) Again,

>welcome to

>> > this very informative group:) Any questions you may have will

>more than

>> > likely be answered better here than with a DR, just ask ole ROB

>WATSON in

>> > aussie....he's awesome:) Leanne and family NZ -------Original

>> > Message------- From: MacKinnonDate: 08/16/06 05:47:30To:

>> > blepharophimosis@...<blepharophimosis%40Subject>:

>> > blepharophimosis long term effect of compensations

>> >

>> > >Hi, I am new to this site as my 2 month old son, Braydon, was

>just

>> > >diagnosed with BPES today. They say he won't need surgery until

>he

>> > is<br>4 or 5, and that it's good that he's compensating by

>tilting his

>> > head<br>backwards to see better. I'm happy that he's able to

>compensate but

>> >

>> > >concerned that 4 or 5 years of holding his head tilted back

>will cause

>> > >other problems. Can anyone comment on this for me? And after

>having

>> > >surgery, would the backwards head tilting correct itself or

>would it

>> > >remain since it would be the only way he's ever held his head?

>> > >Thanks in advance!

>> > >

>> > >Jen

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> >

>> >

>> >

>>

>

>

>

>

___________________________________________________________

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[Guest guest]

Thank you, that's how I feel about the head tilting issue as well. I just graduated as a Physiotherapist so know that there are many problems that could be caused by tilting your head back. However when he was diagnosed, everyone seemed to be happy that he was tilting his head. I guess in a way it's great that he can make compensations to see better...but in the long run I don't want him doing that for long! Well they're going to be following Braydon closely so I'll definitely mention my concerns at our next appointment. I know they say it's optimal to wait until they're older to do surgery, because there's more eyelid tissue to work with and because they've grown a little they have a better idea of the correction that's needed, but did you notice any difference in the surgical outcome of your three kids that were all done at different ages?

Thanks, Jen

[Guest guest]

Nick 14, has had a few surgeries to adjust his lids when they started drooping again. I don't feel one surgery would have been enough for him no matter how long we waited. unless we waited til he was fully grown. Which i would have never done. I want him being able to see perfectly and not having to compinsate to do so. Even , 1 , will outgrow her surgery. She has so much growing to do over the next say 18 years. She is bound to droop. I accept that and move on. I do waht is best forr them at their age. Example If I find they are tilting their heads to see at 2, they get it fixed. If at 6 their lids are dropping so bad again that they can;t see all around them, we fix it. I don;t like surgeries at all, believe me I cry, sleepless nights, throw up...the whole thing scares the life out of me. On the other had...i want my kids living normal lives. Just my feeling on it.

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[Guest guest]

,

My daughter had surgery at 10 months and again at 14 months to

correct her low lid problem. She is now almost 21 and you can't

even see the scars. There is another issue besides head tilting

that should be considered. Like any other plastic surgery to lift

the face, your son's appearance after the surgery will be exagerated

for a while. It takes time for the tissue to form a more normal

appearance and that time for my daughter was about 2 years. She

actually had pretty large openings but had the droopy lids and the

folds in the corner. When she had her brow surgery she had that

surprised look like alot of people who have face lifts. I realize

that she had her surgery quite a while ago, but her surgeon spoke of

shortening of the ligatures in her neck if she continued to tilt her

head. Also, he said there was no reason to let her condition affect

her socialization even at an early age. There are some worries

about small children and surgery. My doctor used some kind of

anestetic other than narcotics to put her under but I'm sorry I

don't know what it was. Also, because babies tend to rub their

eyes, we had to put splints on her arms to keep them from bending

until the stitches came out. However, the doctor said because she

was so young, she didn't know she should hurt when she was cut so

she didn't pay much attention to the area.

I thank God everyday for my . I believe like a lot of parents,

that being different made more compasionate than most

children. She is ever the peacemaker and has a huge group of

friends that are really close.

Kathy

-- In blepharophimosis , " MacKinnon "

<jennifer.mackinnon@...> wrote:

>

> Thank you, that's how I feel about the head tilting issue as

well. I just

> graduated as a Physiotherapist so know that there are many

problems that

> could be caused by tilting your head back. However when he was

diagnosed,

> everyone seemed to be happy that he was tilting his head. I guess

in a way

> it's great that he can make compensations to see better...but in

the long

> run I don't want him doing that for long! Well they're going to be

> following Braydon closely so I'll definitely mention my concerns

at our next

> appointment.

>

> I know they say it's optimal to wait until they're older to do

surgery,

> because there's more eyelid tissue to work with and because

they've grown a

> little they have a better idea of the correction that's needed,

but did you

> notice any difference in the surgical outcome of your three kids

that were

> all done at different ages?

>

> Thanks, Jen

>