Re: new mom looking for answers

[Guest guest]

I was there Tailynn was 4mths old when we discovered her Bpes.... and she is also the first as well..... sarah_skehan <sarah_skehan@...> wrote: My 5 month old son was just diagnosed with BPES. There is no history on either side and this is our first child. We had never heard of this condition, all we knew was he didn't open his eyes very wide. His pediatrician referred us to a local ophthalmologist, who explained his findings and recommended surgery. I'm sure many of you can relate to

the devastation and fear that we are going through. The more information I find, the more questions I have. I'm trying to stay positive but so far the past 3 days have been very tough. We have spent the past 5 months feeling so blessed, taking hundreds of pictures, and just being so happy. I feel like that was all taken away from me in the blink of an eye. I certainly don't enjoy him any less but all I can think of now is the hardships he will endure and I feel so helpless. It has been a rollercoaster ride. I have been finding info and looking at pictures that both encourage me, and scare me. There seems to be such a difference in individual results. The ophthalmologist we are seeing recommends doing surgery in the next couple months because his vision does not seem to have been affected yet. He was open about the fact that the procedure may have to be repeated. He explained the frontal sling procedure by saying he

would make 3 incesions above his brow. I've also seen this done using the forehead for attatchment. Can anyone explain the benefits of either way? It's also been recommended that we close the space between his eyes using the y to v procedure and that we might as well do that at the same time. It seems that not many people opt to do this so young. They say it's an easy procedure and the surgeon has done between 100-125. The surgery seems to be such an art. If anyone has a surgeon they swore by, I would travel the world to give him the very best. Any advice would be greatly appreciated.

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[Guest guest]

I have a 6 month old daughter with BPES and all cases of BPES are different but i will tell you that in my daughter's case her dr. doesn't want to do surgery until she is at least 3 years old because the muscles in her face are not done growing and changing, they won't be done changing at 3 but they will be closer. anyways my point in telling you this is that our dr. said if we opted to do surgery this young (which at the time was what we thought we wanted) that our daughter would most likely have to have the surgeries done again after she started school because her muscles would have grown to much and she would go back to not being able to open them very far. as a new mother myself i didn't want my daughter to have to go through any more surgeries than necesary. Maybe you should talk to you dr about that as well. my dr also told me that if my daughter started to lose her sight than he would recommend surgery right away but her eyesight has not been affected by this. we see the eye dr every 2 months he is keeping a very close eye on her. i hope my input will help you a little maybe just give you some questions to ask your dr. i would be interested in what your dr has to say about it for the obvious reasons as i am in the same situation and i know it is hard and all i hope is that i am doing what is best for my daughter.

Dayton ohio

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[Guest guest]

hi there welcome to the group, where are you located? i myself have a 9 yr. old son with bpes, first in our family, lynden had his first surgery at 6 weeks old....VERY YOUNG. He has had 4 surgeries to date...the reason he had surgery so young is because his vision was greatly obstructed. there was no other option, i know my doctor says that every doctor does surgery at different times and for various reasons, and also various surgeries, all depending on severity and degree of BPES... Anyway i just wanted to welcome you and there are a great bunch of individuals with many different stories and surgeries or lack there ofmy advice is to get all the Dr.'s opinions you are comfortable with, it also helps if someone from this group shares the same doctor you do as they can then tell you their own experience..... so that is why i asked where you are from. what is your sons name?anyway hope i was a wee bit helpfultonikka (lynden age 9)edmonton alberta canadaOn 4-Mar-07, at 1:53 PM, sarah_skehan wrote:My 5 month old son was just diagnosed with BPES. There is no history on either side and this is our first child. We had never heard of this condition, all we knew was he didn't open his eyes very wide. His pediatrician referred us to a local ophthalmologist, who explained his findings and recommended surgery. I'm sure many of you can relate to the devastation and fear that we are going through. The more information I find, the more questions I have. I'm trying to stay positive but so far the past 3 days have been very tough. We have spent the past 5 months feeling so blessed, taking hundreds of pictures, and just being so happy. I feel like that was all taken away from me in the blink of an eye. I certainly don't enjoy him any less but all I can think of now is the hardships he will endure and I feel so helpless. It has been a rollercoaster ride. I have been finding info and looking at pictures that both encourage me, and scare me. There seems to be such a difference in individual results. The ophthalmologist we are seeing recommends doing surgery in the next couple months because his vision does not seem to have been affected yet. He was open about the fact that the procedure may have to be repeated. He explained the frontal sling procedure by saying he would make 3 incesions above his brow. I've also seen this done using the forehead for attatchment. Can anyone explain the benefits of either way? It's also been recommended that we close the space between his eyes using the y to v procedure and that we might as well do that at the same time. It seems that not many people opt to do this so young. They say it's an easy procedure and the surgeon has done between 100-125. The surgery seems to be such an art. If anyone has a surgeon they swore by, I would travel the world to give him the very best. Any advice would be greatly appreciated. Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com

[Guest guest]

Hi ,

> My 5 month old son was just diagnosed with BPES. There is no

> history on either side and this is our first child. We had never

> heard of this condition,

Not surprising. Most doctors have never heard of it either, and most

ophthalmic surgeons have never seen it. However, let not your heart be

troubled.

> I have been finding info and looking at pictures that both

> encourage me, and scare me.

The scary one was probably me; sorry about that. My photos are posted as

a parents' discipline aid: " Do X, kid, or you'll end up looking like

this old pervert... " where 'X' is 'eat your vegetables', 'finish your

homework', 'calculate my taxes', etc., depending on the age and

accounting skills of the child in question.

> There seems to be such a difference in

> individual results. The ophthalmologist we are seeing recommends

> doing surgery in the next couple months because his vision does not

> seem to have been affected yet.

Strange. Most surgeons only operate that young if vision IS already

definitely affected. Perhaps the surgeon believes his vision WILL be

affected even though it isn't yet? Plausible, I guess.

> He was open about the fact that the

> procedure may have to be repeated.

Usually, an early sling (if necessary) is a temporary one to prevent

vision loss, and the second, permanent, one is done after the

canthoplasty, which is usually done just before starting school. But

there are variations on that pattern, depending on child and quack,

disclaimer disclaimer disclaimer.

> He explained the frontal sling

> procedure by saying he would make 3 incesions above his brow. I've

> also seen this done using the forehead for attatchment. Can anyone

> explain the benefits of either way?

" Either way " ? There is only one way, which you've described. The three

incisions above the brow are for inserting the sling material (fascia

lata or silicone, usually) which connects the forehead (frontalis)

muscle to the lid. So you're both right.

> It's also been recommended that

> we close the space between his eyes using the y to v procedure and

> that we might as well do that at the same time.

That's the canthoplasty operation, which is usually left as late as

possible (i.e. just before or after starting school) since the face

grows so much in young'ns. It's quite rare for it to be done along with

an infant sling - more usually just before (or sometimes along with) the

pre-school sling. I'd get at least one more opinion if I was me.

> It seems that not

> many people opt to do this so young.

The canthoplasty? True.

> They say it's an easy

> procedure and the surgeon has done between 100-125. The surgery

> seems to be such an art. If anyone has a surgeon they swore by, I

> would travel the world to give him the very best.

Whither thou?

>

Rob W

Oz

[Guest guest]

Hi

Congrats on the birth of your son and welcome to this wonderful

group. Your son is going to be fine.

I have a 4 yr old daughter, Kirsten who is the first in our family

to have BPES. I was also on an emotional roller coaster after she

was born, it does get better.

Finding the right surgeon is important and you have time to get a

second opinion. You won't need to travel the world as there are good

surgeons all over. Let us know where you are and we can give you

some recommendations from experience. If the ophthalmologist you

have seen has done over 100 patients with BPES, then he ( or she?)

would be regarded as extremely experienced and probably very good.

The choice is ultimately yours and don't let a doctor bulldoze you

into making a decision until you are sure that you are making an

informed and comfortable choice. You are entitled to a second

opinion and you won't be turned away. If both doctors say the same

thing then the decision is easy.

Regards

Parsons

Harrogate, UK

>

> My 5 month old son was just diagnosed with BPES. There is no

> history on either side and this is our first child. We had never

> heard of this condition, all we knew was he didn't open his eyes

> very wide. His pediatrician referred us to a local

ophthalmologist,

> who explained his findings and recommended surgery. I'm sure many

> of you can relate to the devastation and fear that we are going

> through. The more information I find, the more questions I have.

> I'm trying to stay positive but so far the past 3 days have been

> very tough. We have spent the past 5 months feeling so blessed,

> taking hundreds of pictures, and just being so happy. I feel like

> that was all taken away from me in the blink of an eye. I

certainly

> don't enjoy him any less but all I can think of now is the

hardships

> he will endure and I feel so helpless. It has been a

rollercoaster

> ride. I have been finding info and looking at pictures that both

> encourage me, and scare me. There seems to be such a difference

in

> individual results. The ophthalmologist we are seeing recommends

> doing surgery in the next couple months because his vision does

not

> seem to have been affected yet. He was open about the fact that

the

> procedure may have to be repeated. He explained the frontal sling

> procedure by saying he would make 3 incesions above his brow.

I've

> also seen this done using the forehead for attatchment. Can

anyone

> explain the benefits of either way? It's also been recommended

that

> we close the space between his eyes using the y to v procedure and

> that we might as well do that at the same time. It seems that not

> many people opt to do this so young. They say it's an easy

> procedure and the surgeon has done between 100-125. The surgery

> seems to be such an art. If anyone has a surgeon they swore by, I

> would travel the world to give him the very best.

> Any advice would be greatly appreciated.

>

>

[Guest guest]

Hi

My daughter is 2.5 and has silicon slings and just had canthioplasty,

she is doing great and I feel really confident for her.

I think the others gave you good advice to find a surgeon in your

area that others have used and liked. If your little boy can see

right now, I don't see why you need to rush into two procedures.

Maybe there is a reason that can be better explained.

Are you in the US?

>

> My 5 month old son was just diagnosed with BPES. There is no

> history on either side and this is our first child. We had never

> heard of this condition, all we knew was he didn't open his eyes

> very wide. His pediatrician referred us to a local

ophthalmologist,

> who explained his findings and recommended surgery. I'm sure many

> of you can relate to the devastation and fear that we are going

> through. The more information I find, the more questions I have.

> I'm trying to stay positive but so far the past 3 days have been

> very tough. We have spent the past 5 months feeling so blessed,

> taking hundreds of pictures, and just being so happy. I feel like

> that was all taken away from me in the blink of an eye. I

certainly

> don't enjoy him any less but all I can think of now is the

hardships

> he will endure and I feel so helpless. It has been a rollercoaster

> ride. I have been finding info and looking at pictures that both

> encourage me, and scare me. There seems to be such a difference in

> individual results. The ophthalmologist we are seeing recommends

> doing surgery in the next couple months because his vision does not

> seem to have been affected yet. He was open about the fact that

the

> procedure may have to be repeated. He explained the frontal sling

> procedure by saying he would make 3 incesions above his brow. I've

> also seen this done using the forehead for attatchment. Can anyone

> explain the benefits of either way? It's also been recommended

that

> we close the space between his eyes using the y to v procedure and

> that we might as well do that at the same time. It seems that not

> many people opt to do this so young. They say it's an easy

> procedure and the surgeon has done between 100-125. The surgery

> seems to be such an art. If anyone has a surgeon they swore by, I

> would travel the world to give him the very best.

> Any advice would be greatly appreciated.

>

>

[Guest guest]

Hey ,

I love your son's name ! I have a 16 year old daughter, , who has had 7 surgeries. She had a very severe case of BPES. It is so hard to get a good question and answer session and get the information you need quickly via e mail. We are now living in North Carolina but at the time of 's surgeries we were living in Connecticut. If you would like to talk about our experiences give me a call. Evenings are best.

336-427-0372

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Thanks for responding

We are in the US. We live in Maine. I just spoke to his

pediatrician today and she seemed surprised by the diagnosis, but

thought surgery now was a good choice. She feels that his

development at this point is right on target but encouraged us to do

genetic counseling (which I told her we were going to do) as that is

the only way to tell how this will affect him. Our pediatrician's

children see the same ophalmatologist she recommended to us, and she

says she would feel very safe with him. However, I wonder if anyone

in this group is from my area.

How old was your daughter when she had the slings?

> >

> > My 5 month old son was just diagnosed with BPES. There is no

> > history on either side and this is our first child. We had

never

> > heard of this condition, all we knew was he didn't open his eyes

> > very wide. His pediatrician referred us to a local

> ophthalmologist,

> > who explained his findings and recommended surgery. I'm sure

many

> > of you can relate to the devastation and fear that we are going

> > through. The more information I find, the more questions I

have.

> > I'm trying to stay positive but so far the past 3 days have been

> > very tough. We have spent the past 5 months feeling so blessed,

> > taking hundreds of pictures, and just being so happy. I feel

like

> > that was all taken away from me in the blink of an eye. I

> certainly

> > don't enjoy him any less but all I can think of now is the

> hardships

> > he will endure and I feel so helpless. It has been a

rollercoaster

> > ride. I have been finding info and looking at pictures that

both

> > encourage me, and scare me. There seems to be such a difference

in

> > individual results. The ophthalmologist we are seeing

recommends

> > doing surgery in the next couple months because his vision does

not

> > seem to have been affected yet. He was open about the fact that

> the

> > procedure may have to be repeated. He explained the frontal

sling

> > procedure by saying he would make 3 incesions above his brow.

I've

> > also seen this done using the forehead for attatchment. Can

anyone

> > explain the benefits of either way? It's also been recommended

> that

> > we close the space between his eyes using the y to v procedure

and

> > that we might as well do that at the same time. It seems that

not

> > many people opt to do this so young. They say it's an easy

> > procedure and the surgeon has done between 100-125. The surgery

> > seems to be such an art. If anyone has a surgeon they swore by,

I

> > would travel the world to give him the very best.

> > Any advice would be greatly appreciated.

> >

> >

>

[Guest guest]

We are in the US- in Maine. Are you familiar with anyone in our

area? Has Kirsten had any surgeries?

> >

> > My 5 month old son was just diagnosed with BPES. There is no

> > history on either side and this is our first child. We had

never

> > heard of this condition, all we knew was he didn't open his eyes

> > very wide. His pediatrician referred us to a local

> ophthalmologist,

> > who explained his findings and recommended surgery. I'm sure

many

> > of you can relate to the devastation and fear that we are going

> > through. The more information I find, the more questions I

have.

> > I'm trying to stay positive but so far the past 3 days have been

> > very tough. We have spent the past 5 months feeling so blessed,

> > taking hundreds of pictures, and just being so happy. I feel

like

> > that was all taken away from me in the blink of an eye. I

> certainly

> > don't enjoy him any less but all I can think of now is the

> hardships

> > he will endure and I feel so helpless. It has been a

> rollercoaster

> > ride. I have been finding info and looking at pictures that

both

> > encourage me, and scare me. There seems to be such a difference

> in

> > individual results. The ophthalmologist we are seeing

recommends

> > doing surgery in the next couple months because his vision does

> not

> > seem to have been affected yet. He was open about the fact that

> the

> > procedure may have to be repeated. He explained the frontal

sling

> > procedure by saying he would make 3 incesions above his brow.

> I've

> > also seen this done using the forehead for attatchment. Can

> anyone

> > explain the benefits of either way? It's also been recommended

> that

> > we close the space between his eyes using the y to v procedure

and

> > that we might as well do that at the same time. It seems that

not

> > many people opt to do this so young. They say it's an easy

> > procedure and the surgeon has done between 100-125. The surgery

> > seems to be such an art. If anyone has a surgeon they swore by,

I

> > would travel the world to give him the very best.

> > Any advice would be greatly appreciated.

> >

> >

>

[Guest guest]

Our doctor made it sound like we really should do early surgery to

save his eyesight. We haven't followed up with him yet as it has

only been a few days and we are trying to gather all the information

we can, so we can ask the right questions. I'm not sure the

severity of your daughters compared to our son's (his name is

Donovan) I wonder if that is the difference or just a difference of

opinions between doctors. I did contact his pediatrician and she

seemed surprised by the diagnosis but on board with the idea of

surgery. I'll let you know what we find out.

Maine

--- In blepharophimosis , " hbarga@... " <hbarga@...>

wrote:

>

> I have a 6 month old daughter with BPES and all cases of BPES are

different but i will tell you that in my daughter's case her dr.

doesn't want to do surgery until she is at least 3 years old because

the muscles in her face are not done growing and changing, they

won't be done changing at 3 but they will be closer. anyways my

point in telling you this is that our dr. said if we opted to do

surgery this young (which at the time was what we thought we wanted)

that our daughter would most likely have to have the surgeries done

again after she started school because her muscles would have grown

to much and she would go back to not being able to open them very

far. as a new mother myself i didn't want my daughter to have to go

through any more surgeries than necesary. Maybe you should talk to

you dr about that as well. my dr also told me that if my daughter

started to lose her sight than he would recommend surgery right away

but her eyesight has not been affected by this. we see the eye dr

every 2 months he is keeping a very close eye on her. i hope my

input will help you a little maybe just give you some questions to

ask your dr. i would be interested in what your dr has to say about

it for the obvious reasons as i am in the same situation and i know

it is hard and all i hope is that i am doing what is best for my

daughter.

>

>

> Dayton ohio

>

>

>

>

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[Guest guest]

How old is she now, and how is she doing?...

My 5 month old son

was just diagnosed with BPES. There is no

> history on either side and this is our first child. We had never

> heard of this condition, all we knew was he didn't open his eyes

> very wide. His pediatrician referred us to a local

ophthalmologist,

> who explained his findings and recommended surgery. I'm sure many

> of you can relate to the devastation and fear that we are going

> through. The more information I find, the more questions I have.

> I'm trying to stay positive but so far the past 3 days have been

> very tough. We have spent the past 5 months feeling so blessed,

> taking hundreds of pictures, and just being so happy. I feel like

> that was all taken away from me in the blink of an eye. I

certainly

> don't enjoy him any less but all I can think of now is the

hardships

> he will endure and I feel so helpless. It has been a rollercoaster

> ride. I have been finding info and looking at pictures that both

> encourage me, and scare me. There seems to be such a difference in

> individual results. The ophthalmologist we are seeing recommends

> doing surgery in the next couple months because his vision does

not

> seem to have been affected yet. He was open about the fact that

the

> procedure may have to be repeated. He explained the frontal sling

> procedure by saying he would make 3 incesions above his brow. I've

> also seen this done using the forehead for attatchment. Can anyone

> explain the benefits of either way? It's also been recommended

that

> we close the space between his eyes using the y to v procedure and

> that we might as well do that at the same time. It seems that not

> many people opt to do this so young. They say it's an easy

> procedure and the surgeon has done between 100-125. The surgery

> seems to be such an art. If anyone has a surgeon they swore by, I

> would travel the world to give him the very best.

> Any advice would be greatly appreciated.

>

>

>

>

>

>

>

> ---------------------------------

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> Toolbar alerts you the instant new Mail arrives. Check it

out.

>

[Guest guest]

Thank you for responding

We are from Maine, and my son's name is Donovan. You must have know

very early on with your son. Would you tell me what surgeries he

had at what stages and how he is doing?

>

> > My 5 month old son was just diagnosed with BPES. There is no

> > history on either side and this is our first child. We had never

> > heard of this condition, all we knew was he didn't open his eyes

> > very wide. His pediatrician referred us to a local

ophthalmologist,

> > who explained his findings and recommended surgery. I'm sure many

> > of you can relate to the devastation and fear that we are going

> > through. The more information I find, the more questions I have.

> > I'm trying to stay positive but so far the past 3 days have been

> > very tough. We have spent the past 5 months feeling so blessed,

> > taking hundreds of pictures, and just being so happy. I feel like

> > that was all taken away from me in the blink of an eye. I

certainly

> > don't enjoy him any less but all I can think of now is the

hardships

> > he will endure and I feel so helpless. It has been a

rollercoaster

> > ride. I have been finding info and looking at pictures that both

> > encourage me, and scare me. There seems to be such a difference

in

> > individual results. The ophthalmologist we are seeing recommends

> > doing surgery in the next couple months because his vision does

not

> > seem to have been affected yet. He was open about the fact that

the

> > procedure may have to be repeated. He explained the frontal sling

> > procedure by saying he would make 3 incesions above his brow.

I've

> > also seen this done using the forehead for attatchment. Can

anyone

> > explain the benefits of either way? It's also been recommended

that

> > we close the space between his eyes using the y to v procedure

and

> > that we might as well do that at the same time. It seems that not

> > many people opt to do this so young. They say it's an easy

> > procedure and the surgeon has done between 100-125. The surgery

> > seems to be such an art. If anyone has a surgeon they swore by, I

> > would travel the world to give him the very best.

> > Any advice would be greatly appreciated.

> >

> >

> >

> >

>

>

> Tonikka & Chris

> check out our blog

> www.nottynurse.blogspot.com

>

>

> 

>

[Guest guest]

Lily had slings at 6 weeks because she could not open her eyes at

all. It didn't turn out very well, althought it did open her eyes a

little, and had to be done over at 6 months with a good result ( with

a different doctor). Her vision is developing normally and the thing

about BPES, my mom always said and I think she is right, it gets

better as the kids grow, faces develop, they get stronger. Once Lily

started walking I saw such an improvement. Not much to see if your

eyes are small and you are only rolling around on the floor,

especially for her she was a super chubby baby. (love those chubby

babies!) Our surgeon recommended canthioplasty at 2.5 which she had

one week ago, and a ptosis repair using fascia lata at 3.5. I have

been very happy with Dr. Gavaris, at children's hospital in DC. There

are some families on this board who go to Children's in Boston ( I

think) and you might get a response from one of them.

You mention an opthalmologist, is this the doctor who will perform

the surgery? Lily sees a pediatric opthalmologist, who checks her

vision, and an oculoplastic surgeon, who performs the surgery. I

never even heard of an oculoplastic surgeon until Lily was born, but

my parents say, I saw one, too. I just only knew him as " Dr. "

I know it's scary but go on feeling blessed with your precious baby.

Beth and Lily

> > >

> > > My 5 month old son was just diagnosed with BPES. There is no

> > > history on either side and this is our first child. We had

> never

> > > heard of this condition, all we knew was he didn't open his

eyes

> > > very wide. His pediatrician referred us to a local

> > ophthalmologist,

> > > who explained his findings and recommended surgery. I'm sure

> many

> > > of you can relate to the devastation and fear that we are going

> > > through. The more information I find, the more questions I

> have.

> > > I'm trying to stay positive but so far the past 3 days have

been

> > > very tough. We have spent the past 5 months feeling so

blessed,

> > > taking hundreds of pictures, and just being so happy. I feel

> like

> > > that was all taken away from me in the blink of an eye. I

> > certainly

> > > don't enjoy him any less but all I can think of now is the

> > hardships

> > > he will endure and I feel so helpless. It has been a

> rollercoaster

> > > ride. I have been finding info and looking at pictures that

> both

> > > encourage me, and scare me. There seems to be such a

difference

> in

> > > individual results. The ophthalmologist we are seeing

> recommends

> > > doing surgery in the next couple months because his vision does

> not

> > > seem to have been affected yet. He was open about the fact

that

> > the

> > > procedure may have to be repeated. He explained the frontal

> sling

> > > procedure by saying he would make 3 incesions above his brow.

> I've

> > > also seen this done using the forehead for attatchment. Can

> anyone

> > > explain the benefits of either way? It's also been recommended

> > that

> > > we close the space between his eyes using the y to v procedure

> and

> > > that we might as well do that at the same time. It seems that

> not

> > > many people opt to do this so young. They say it's an easy

> > > procedure and the surgeon has done between 100-125. The

surgery

> > > seems to be such an art. If anyone has a surgeon they swore

by,

> I

> > > would travel the world to give him the very best.

> > > Any advice would be greatly appreciated.

> > >

> > >

> >

>

[Guest guest]

Donovan doesn't like tummy time very much and I can't blame him

because he probably can't see very well from there. I try to lay

beside him where he can see me and encourage him to roll over. I

really am trying to stay positive, and am very thankful to be able

to talk to people that can understand.

Yes, his pediatric ophthalmologist wuld be the one to do the slings,

and then another surgeon would do the y to v. (canthioplasty?) I'm

not sure what his title is but I think he was more of a cosmetic

surgeon....it's so hard to trust anyone with this- I haven't even

let anyone but his grandparents babysit him yet!

> > > >

> > > > My 5 month old son was just diagnosed with BPES. There is

no

> > > > history on either side and this is our first child. We had

> > never

> > > > heard of this condition, all we knew was he didn't open his

> eyes

> > > > very wide. His pediatrician referred us to a local

> > > ophthalmologist,

> > > > who explained his findings and recommended surgery. I'm

sure

> > many

> > > > of you can relate to the devastation and fear that we are

going

> > > > through. The more information I find, the more questions I

> > have.

> > > > I'm trying to stay positive but so far the past 3 days have

> been

> > > > very tough. We have spent the past 5 months feeling so

> blessed,

> > > > taking hundreds of pictures, and just being so happy. I

feel

> > like

> > > > that was all taken away from me in the blink of an eye. I

> > > certainly

> > > > don't enjoy him any less but all I can think of now is the

> > > hardships

> > > > he will endure and I feel so helpless. It has been a

> > rollercoaster

> > > > ride. I have been finding info and looking at pictures that

> > both

> > > > encourage me, and scare me. There seems to be such a

> difference

> > in

> > > > individual results. The ophthalmologist we are seeing

> > recommends

> > > > doing surgery in the next couple months because his vision

does

> > not

> > > > seem to have been affected yet. He was open about the fact

> that

> > > the

> > > > procedure may have to be repeated. He explained the frontal

> > sling

> > > > procedure by saying he would make 3 incesions above his

brow.

> > I've

> > > > also seen this done using the forehead for attatchment. Can

> > anyone

> > > > explain the benefits of either way? It's also been

recommended

> > > that

> > > > we close the space between his eyes using the y to v

procedure

> > and

> > > > that we might as well do that at the same time. It seems

that

> > not

> > > > many people opt to do this so young. They say it's an easy

> > > > procedure and the surgeon has done between 100-125. The

> surgery

> > > > seems to be such an art. If anyone has a surgeon they swore

> by,

> > I

> > > > would travel the world to give him the very best.

> > > > Any advice would be greatly appreciated.

> > > >

> > > >

> > >

> >

>

[Guest guest]

shes just turned 4yrs old she doing great .... had 3 surgey sarah_skehan <sarah_skehan@...> wrote: How old is she now, and how is she doing?... My 5 month old son was just diagnosed with BPES. There is no > history on either side and this is our first child. We had never > heard of this condition, all we knew was he didn't open his eyes > very wide. His pediatrician referred us to a local ophthalmologist, > who explained his findings and recommended surgery. I'm sure many > of you can relate to the devastation and fear that we are going > through. The more information I find, the more questions I have. > I'm trying to stay positive but so far the past 3 days have been > very tough. We have spent the past 5 months feeling so blessed, > taking hundreds of pictures, and just being so happy. I feel like > that was all taken away from me in the blink of an eye. I certainly > don't enjoy him any less but all I can think of now is the hardships > he will endure and I feel so helpless.

It has been a rollercoaster > ride. I have been finding info and looking at pictures that both > encourage me, and scare me. There seems to be such a difference in > individual results. The ophthalmologist we are seeing recommends > doing surgery in the next couple months because his vision does not > seem to have been affected yet. He was open about the fact that the > procedure may have to be repeated. He explained the frontal sling > procedure by saying he would make 3 incesions above his brow. I've > also seen this done using the forehead for attatchment. Can anyone > explain the benefits of either way? It's also been recommended that > we close the space between his eyes using the y to v procedure and > that we might as well do that at the same time. It seems that not > many people opt to do this so young. They say it's an easy > procedure and the surgeon has done

between 100-125. The surgery > seems to be such an art. If anyone has a surgeon they swore by, I > would travel the world to give him the very best. > Any advice would be greatly appreciated.> > > > > > > > ---------------------------------> Never miss an email again!> Toolbar alerts you the instant new Mail arrives. Check it out.>

Get your own web address. Have a HUGE year through Small Business.

[Guest guest]

hi sarah, i did know as soon as he was born that something was "different" with his eyes, i am a nurse and i am very persistant,  my doctor said nothing was wrong but because i was persistant he referred me to our surgeon,   as soon as the surgeon saw my son he was having surgery within the week becuase his eyes were almost closed (check out lyndens photos)  lynden has had a brow lift, with the silicone rods inserted (permanent)  although not every  surgeon does permanent, our doctor says majority of the reasons that some surgeons use different techniques is due to climate... we are very dry here... anyway then he had the y canthoplasty, another brow lift and just a touch up here and there.... lynden is doing fine now, came thru the surgeries like he never had them. lynden also has glasses and sincehe got those he has not really had a comment  on his eyes...he used to get every second person "whats wrong with your eyes" .... but now he is 9 and is fine, we see the surgeon every year and all is good.... hope that helps a bit.tonikkaedmonton alberta CANADAOn 5-Mar-07, at 2:08 PM, sarah_skehan wrote:Thank you for respondingWe are from Maine, and my son's name is Donovan. You must have know very early on with your son. Would you tell me what surgeries he had at what stages and how he is doing?> > > My 5 month old son was just diagnosed with BPES. There is no> > history on either side and this is our first child. We had never> > heard of this condition, all we knew was he didn't open his eyes> > very wide. His pediatrician referred us to a local ophthalmologist,> > who explained his findings and recommended surgery. I'm sure many> > of you can relate to the devastation and fear that we are going> > through. The more information I find, the more questions I have.> > I'm trying to stay positive but so far the past 3 days have been> > very tough. We have spent the past 5 months feeling so blessed,> > taking hundreds of pictures, and just being so happy. I feel like> > that was all taken away from me in the blink of an eye. I certainly> > don't enjoy him any less but all I can think of now is the hardships> > he will endure and I feel so helpless. It has been a rollercoaster> > ride. I have been finding info and looking at pictures that both> > encourage me, and scare me. There seems to be such a difference in> > individual results. The ophthalmologist we are seeing recommends> > doing surgery in the next couple months because his vision does not> > seem to have been affected yet. He was open about the fact that the> > procedure may have to be repeated. He explained the frontal sling> > procedure by saying he would make 3 incesions above his brow. I've> > also seen this done using the forehead for attatchment. Can anyone> > explain the benefits of either way? It's also been recommended that> > we close the space between his eyes using the y to v procedure and> > that we might as well do that at the same time. It seems that not> > many people opt to do this so young. They say it's an easy> > procedure and the surgeon has done between 100-125. The surgery> > seems to be such an art. If anyone has a surgeon they swore by, I> > would travel the world to give him the very best.> > Any advice would be greatly appreciated.> > > >> >> > > > > Tonikka & Chris> check out our blog> www.nottynurse.blogspot.com> > > > Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com

[Guest guest]

I don't know any surgeons in the States. Kirsten was born in South

Africa and we saw a plastic surgeon there who wanted to do both the

lid lift and canthoplasty at the same time. Kirsten was 1 yr old

then and we were about to emigrate to the UK. I didn't feel

comfortable with the idea of 2 ops at once either. Both the plastic

surgeon and her ophthalmologist in SA recommended Mr Collin in

London. Mr Collin did Kirsten's lid lift when she was 2 yrs and her

Y-V canthoplasty when she was 3 yrs. She is now 4 and is scheduled

to have a permanent lid lift done in April using fascia from her

thigh. This should then be the end of any surgery.

Mr Collin told me that he prefers not to do the canthoplasty and lid

lift at the same time as the 2 operations pull tissue in opposite

directions and the result is not as good as doing them separately at

different times. He also used to wait till the kids were 2 yrs

before doing the lid lift, but he now will do them earlier as

research has shown that any obstruction to the pupil, even partial

obstruction, can affect eyesight development.

Kirsten now wears glasses, she is far-sighted (+2.5) in both eyes

and has an astygmatism in one eye.

Each case is different, there is no blanket rule that all surgeons

follow. I am very glad that I got two opinions and am pleased that

Kirsten was operated on by one of the best surgeons. Her pictures

are under 'Kirsten Parsons'

Regards

Parsons

Harrogate, UK

> > >

> > > My 5 month old son was just diagnosed with BPES. There is no

> > > history on either side and this is our first child. We had

> never

> > > heard of this condition, all we knew was he didn't open his

eyes

> > > very wide. His pediatrician referred us to a local

> > ophthalmologist,

> > > who explained his findings and recommended surgery. I'm sure

> many

> > > of you can relate to the devastation and fear that we are

going

> > > through. The more information I find, the more questions I

> have.

> > > I'm trying to stay positive but so far the past 3 days have

been

> > > very tough. We have spent the past 5 months feeling so

blessed,

> > > taking hundreds of pictures, and just being so happy. I feel

> like

> > > that was all taken away from me in the blink of an eye. I

> > certainly

> > > don't enjoy him any less but all I can think of now is the

> > hardships

> > > he will endure and I feel so helpless. It has been a

> > rollercoaster

> > > ride. I have been finding info and looking at pictures that

> both

> > > encourage me, and scare me. There seems to be such a

difference

> > in

> > > individual results. The ophthalmologist we are seeing

> recommends

> > > doing surgery in the next couple months because his vision

does

> > not

> > > seem to have been affected yet. He was open about the fact

that

> > the

> > > procedure may have to be repeated. He explained the frontal

> sling

> > > procedure by saying he would make 3 incesions above his brow.

> > I've

> > > also seen this done using the forehead for attatchment. Can

> > anyone

> > > explain the benefits of either way? It's also been

recommended

> > that

> > > we close the space between his eyes using the y to v procedure

> and

> > > that we might as well do that at the same time. It seems that

> not

> > > many people opt to do this so young. They say it's an easy

> > > procedure and the surgeon has done between 100-125. The

surgery

> > > seems to be such an art. If anyone has a surgeon they swore

by,

> I

> > > would travel the world to give him the very best.

> > > Any advice would be greatly appreciated.

> > >

> > >

> >

>

[Guest guest]

It does help. Lynden looks great- and happy which is very important

to us. We don't want to become so consumed with this that it

defines him. It seems very common to have the three surgeries, and

all at different times. What is the difference with the permanent?

> > >

> > > > My 5 month old son was just diagnosed with BPES. There is no

> > > > history on either side and this is our first child. We had

never

> > > > heard of this condition, all we knew was he didn't open his

eyes

> > > > very wide. His pediatrician referred us to a local

> > ophthalmologist,

> > > > who explained his findings and recommended surgery. I'm sure

many

> > > > of you can relate to the devastation and fear that we are

going

> > > > through. The more information I find, the more questions I

have.

> > > > I'm trying to stay positive but so far the past 3 days have

been

> > > > very tough. We have spent the past 5 months feeling so

blessed,

> > > > taking hundreds of pictures, and just being so happy. I feel

like

> > > > that was all taken away from me in the blink of an eye. I

> > certainly

> > > > don't enjoy him any less but all I can think of now is the

> > hardships

> > > > he will endure and I feel so helpless. It has been a

> > rollercoaster

> > > > ride. I have been finding info and looking at pictures that

both

> > > > encourage me, and scare me. There seems to be such a

difference

> > in

> > > > individual results. The ophthalmologist we are seeing

recommends

> > > > doing surgery in the next couple months because his vision

does

> > not

> > > > seem to have been affected yet. He was open about the fact

that

> > the

> > > > procedure may have to be repeated. He explained the frontal

sling

> > > > procedure by saying he would make 3 incesions above his brow.

> > I've

> > > > also seen this done using the forehead for attatchment. Can

> > anyone

> > > > explain the benefits of either way? It's also been

recommended

> > that

> > > > we close the space between his eyes using the y to v

procedure

> > and

> > > > that we might as well do that at the same time. It seems

that not

> > > > many people opt to do this so young. They say it's an easy

> > > > procedure and the surgeon has done between 100-125. The

surgery

> > > > seems to be such an art. If anyone has a surgeon they swore

by, I

> > > > would travel the world to give him the very best.

> > > > Any advice would be greatly appreciated.

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > > Tonikka & Chris

> > > check out our blog

> > > www.nottynurse.blogspot.com

> > >

> > >

> > > 

> > >

> >

> >

> >

>

>

> Tonikka & Chris

> check out our blog

> www.nottynurse.blogspot.com

>

>

> 

>

[Guest guest]

I've been told that vision develops in the first year of life and is

learned which is why we would like to do this early. That was one

thing I asked about the canthioplasty stretching so much in two

different directions. Donovan's left eye looks like it turns in

some but the dr says it does not at all you just can't tell because

all of it is not exposed. It is slightly smaller than his right

eye. We haven't posted any pics yet

Thanks,

> > > >

> > > > My 5 month old son was just diagnosed with BPES. There is

no

> > > > history on either side and this is our first child. We had

> > never

> > > > heard of this condition, all we knew was he didn't open his

> eyes

> > > > very wide. His pediatrician referred us to a local

> > > ophthalmologist,

> > > > who explained his findings and recommended surgery. I'm

sure

> > many

> > > > of you can relate to the devastation and fear that we are

> going

> > > > through. The more information I find, the more questions I

> > have.

> > > > I'm trying to stay positive but so far the past 3 days have

> been

> > > > very tough. We have spent the past 5 months feeling so

> blessed,

> > > > taking hundreds of pictures, and just being so happy. I

feel

> > like

> > > > that was all taken away from me in the blink of an eye. I

> > > certainly

> > > > don't enjoy him any less but all I can think of now is the

> > > hardships

> > > > he will endure and I feel so helpless. It has been a

> > > rollercoaster

> > > > ride. I have been finding info and looking at pictures that

> > both

> > > > encourage me, and scare me. There seems to be such a

> difference

> > > in

> > > > individual results. The ophthalmologist we are seeing

> > recommends

> > > > doing surgery in the next couple months because his vision

> does

> > > not

> > > > seem to have been affected yet. He was open about the fact

> that

> > > the

> > > > procedure may have to be repeated. He explained the frontal

> > sling

> > > > procedure by saying he would make 3 incesions above his

brow.

> > > I've

> > > > also seen this done using the forehead for attatchment. Can

> > > anyone

> > > > explain the benefits of either way? It's also been

> recommended

> > > that

> > > > we close the space between his eyes using the y to v

procedure

> > and

> > > > that we might as well do that at the same time. It seems

that

> > not

> > > > many people opt to do this so young. They say it's an easy

> > > > procedure and the surgeon has done between 100-125. The

> surgery

> > > > seems to be such an art. If anyone has a surgeon they swore

> by,

> > I

> > > > would travel the world to give him the very best.

> > > > Any advice would be greatly appreciated.

> > > >

> > > >

> > >

> >

>

[Guest guest]

, My son is 4 years old. He has had 4 surgeries. One to lift his lids when he was 5 months. One which was an untied sling correction. One frontalis sling using donor tissue. And one eye muscle surgery for the strabismus. We are actually getting used to the surgeries as much as a parent can. I was prepared when my 6 year old had to have her tonsils out last month. My husband & I do not have BPES either. I can relate to your shock and fear. I feel much better now but sometimes the old feelings sneak up on me. I feel angry sometimes that he has to face this challenge when other children seem to have everything so easy. My 6 year included. All in all it is what it is. I think you can only change so much of the condition without changing who they are and who they are supposed to be. I used to approach this with the idea that I

wanted to remove BPES from his face. I do not feel that way any more. I will only do what is necessary to manage his sight and what ever small things we can do that are not so invasive like canthoplasty when the time is right. My son suffers from Strabismus as well which is much more noticeable than the BPES is. You will do what you can live with. I would only encourage you to get second opinions. You will know when you have found the right Doctor. Don't rush into anything. Your child's sight will not deteriorate overnight. Please try to feel better it really is not the end of the world even if it does feel that way right now. We did find a surgeon out of our area and a pediatric Opth. in our area. You will find your comfort level but you really should get another opinion. Good Luck, Beth

Need a quick answer? Get one in minutes from people who know. Ask your question on

Answers.

[Guest guest]

Hi ! I'm sure that your head is flying in a million directions right now, but I felt I would add to all of that.......You may consider looking into Massachusetts for an Opthomologist/Plastic Surgeon. I have heard wonderful things about Surgeons in that area. (Some are said to be the greatest in the country.) I have heard of successful BPES surgeries performed at Massachusetts Eye and Ear Infirmary, and have seen photos online depicting amazing cosmetic results. Remember to view all Surgeons before and after photos of the BPES procedures they have performed.My daughter had her surgeries performed by Dr. R. Jeffery Hofmann of Rhode Island Eye Institute. He was an amazing "miracle worker" for us, and made the whole procedure completely painless both physically and emotionally. My daughter, who is now 12, looks forward to every appointment with him. Because her procedures were done in such a

positive and pleasant way, she has no fears of doctors or hospitals. In fact she welcomes them, and thinks of them as helpful, instead of hurtful. Currently though, he seems to be more involved in adult cosmetic procedures, but certainly has a gift for making woman beautiful. Like others have said, you will know when you find the right doctor.As anxious and scared as you are feeling right now, there will most likely come a day when you will look back and realize it really isn't that bad.I wish the best for you and your son.Donnasarah_skehan <sarah_skehan@...> wrote: My 5 month old son was just diagnosed with BPES. There is no history on either side and this is our first child. We had never heard of this condition, all we knew was he didn't open his eyes very wide. His pediatrician referred us to a local ophthalmologist, who explained his findings and recommended surgery. I'm sure many of you can relate to the devastation and fear that we are going through. The more information I find, the more questions I have. I'm trying to stay positive but so far the past 3 days have been very tough. We have spent the past 5 months feeling so blessed, taking hundreds of pictures, and just being so happy. I feel like that was all taken away from me in the blink of an eye. I certainly don't enjoy him any less but all I can think of now is the hardships he will endure and I feel so helpless. It has been a rollercoaster ride. I have been finding info and looking at pictures that both encourage me, and scare me. There seems to be such a difference in individual results. The ophthalmologist we are seeing recommends doing surgery in the next couple months because his vision does not seem to have been affected yet. He was open about the fact that the procedure may have to be repeated. He explained the frontal sling procedure by saying he would make 3 incesions above his brow. I've also seen this done using the forehead for attatchment. Can anyone explain the benefits of either way? It's also been recommended that we close the space between his eyes using the y to v procedure and that we might as well do that at the same time. It seems that not many people opt to do this so young. They say it's an easy procedure and the surgeon has done between 100-125. The surgery seems to be such an

art. If anyone has a surgeon they swore by, I would travel the world to give him the very best. Any advice would be greatly appreciated.

Check out the all-new beta - Fire up a more powerful email and get things done faster.

[Guest guest]

from what i understand alot of people who have the silicone rods are told they are only temporary and later they will have the fascia lata put in,  in place of the rod (people with the fascia please help me here as im not quite sure),  however the rods that lynden had put in are permanent. our doctor does not do fascia lata... he will do it but that is depending on where you live (climate again) he says he does not like working with it because it is too rigid and you only have so much pliability to work with!..... but i thnk every doctor has their own techniques, in fact i am sure about that, our doc also does different techniques due to severity too!!! the good thing here is our doctor specializes in BLEPH, he also teaches university and one course he teaches is all about BLEPH, he and one of the genetic doctors we have seen have travelled afar for BLEPH specifically for example they went to africa years ago to do bleph surgeries on people who would otherwise not have it due to it being a poor area with no medical! your right lynden is a very happy boy, sometimes almost too happy (GRIN)  infact for us it never "consumed" us, actually its probably the least talked about issue, i tell lynden to wipe the junk off of his face more then Bleph comes up, not saying it doesn't but its just never been an issue in our house, when he went to school it was an issue... but really since he has gotten his glasses you don't really see anything. not to say it will be easy for everyone.... it most surely may define a persons life, sometimes you have no choice (poor medical advice, or bleph so severe) but mainly in our experience it would only define us if we let it. i just had my 3rd child 7 months ago and i tell you being a maternity nurse there are so many things i have seen babies born with and so far bleph is by far one of the easiest to deal with and i almost prayed that if avery had to have "something" it would be that, i think  we are quite lucky here too because one of my closest friends has a son  with Bleph and we have met a few families here too with it.... anyway looks like you are getting really awesome advice, we would really like to see a picture of Donavon sometime soon... take care...tonikkaedmonton alberta CANADAOn 6-Mar-07, at 6:15 AM, sarah_skehan wrote:It does help. Lynden looks great- and happy which is very important to us. We don't want to become so consumed with this that it defines him. It seems very common to have the three surgeries, and all at different times. What is the difference with the permanent?> > >> > > > My 5 month old son was just diagnosed with BPES. There is no> > > > history on either side and this is our first child. We had never> > > > heard of this condition, all we knew was he didn't open his eyes> > > > very wide. His pediatrician referred us to a local> > ophthalmologist,> > > > who explained his findings and recommended surgery. I'm sure many> > > > of you can relate to the devastation and fear that we are going> > > > through. The more information I find, the more questions I have.> > > > I'm trying to stay positive but so far the past 3 days have been> > > > very tough. We have spent the past 5 months feeling so blessed,> > > > taking hundreds of pictures, and just being so happy. I feel like> > > > that was all taken away from me in the blink of an eye. I> > certainly> > > > don't enjoy him any less but all I can think of now is the> > hardships> > > > he will endure and I feel so helpless. It has been a> > rollercoaster> > > > ride. I have been finding info and looking at pictures that both> > > > encourage me, and scare me. There seems to be such a difference> > in> > > > individual results. The ophthalmologist we are seeing recommends> > > > doing surgery in the next couple months because his vision does> > not> > > > seem to have been affected yet. He was open about the fact that> > the> > > > procedure may have to be repeated. He explained the frontal sling> > > > procedure by saying he would make 3 incesions above his brow.> > I've> > > > also seen this done using the forehead for attatchment. Can> > anyone> > > > explain the benefits of either way? It's also been recommended> > that> > > > we close the space between his eyes using the y to v procedure> > and> > > > that we might as well do that at the same time. It seems that not> > > > many people opt to do this so young. They say it's an easy> > > > procedure and the surgeon has done between 100-125. The surgery> > > > seems to be such an art. If anyone has a surgeon they swore by, I> > > > would travel the world to give him the very best.> > > > Any advice would be greatly appreciated.> > > > > > > >> > > >> > > >> > >> > >> > > Tonikka & Chris> > > check out our blog> > > www.nottynurse.blogspot.com> > >> > >> > > > > >> >> >> > > > > Tonikka & Chris> check out our blog> www.nottynurse.blogspot.com> > > > Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com

[Guest guest]

Tailynn has the slicione rods in we where told they would last .. she described them like rubber bands. they may give out later they may not like a rubber band ... also depends on how fast she grows... etc... we tried the fascia and it wouldnt take with Tailynn at all..Tonikka & <lyndenhunter@...> wrote: from what i understand alot of people who have the silicone rods are told they are only temporary and later they will have the fascia lata put in, in place of the rod (people with the fascia please help me here as im not quite sure), however the rods that lynden had put in are permanent. our doctor does not do fascia lata... he will do it but that is depending on where you live (climate again) he says he does not like working with it because it is too

rigid and you only have so much pliability to work with!..... but i thnk every doctor has their own techniques, in fact i am sure about that, our doc also does different techniques due to severity too!!! the good thing here is our doctor specializes in BLEPH, he also teaches university and one course he teaches is all about BLEPH, he and one of the genetic doctors we have seen have travelled afar for BLEPH specifically for example they went to africa years ago to do bleph surgeries on people who would otherwise not have it due to it being a poor area with no medical! your right lynden is a very happy boy, sometimes almost too happy (GRIN) infact for us it never "consumed" us, actually its probably the least talked about issue, i tell lynden to wipe the junk off of his face more then Bleph comes up, not saying it doesn't but its just never been an issue in our house, when he went to school it was an issue... but really

since he has gotten his glasses you don't really see anything. not to say it will be easy for everyone.... it most surely may define a persons life, sometimes you have no choice (poor medical advice, or bleph so severe) but mainly in our experience it would only define us if we let it. i just had my 3rd child 7 months ago and i tell you being a maternity nurse there are so many things i have seen babies born with and so far bleph is by far one of the easiest to deal with and i almost prayed that if avery had to have "something" it would be that, i think we are quite lucky here too because one of my closest friends has a son with Bleph and we have met a few families here too with it.... anyway looks like you are getting really awesome advice, we would really like to see a picture of Donavon sometime soon... take care...tonikkaedmonton alberta CANADAOn 6-Mar-07, at 6:15 AM, sarah_skehan wrote:> It

does help. Lynden looks great- and happy which is very important> to us. We don't want to become so consumed with this that it> defines him. It seems very common to have the three surgeries, and> all at different times. What is the difference with the permanent?> > > > >> > > > hi there welcome to the group, where are you located?> > > > i myself have a 9 yr. old son with bpes, first in our family,> > > lynden> > > > had his first surgery at 6 weeks old....VERY YOUNG. He has had> 4> > > > surgeries to date...the reason he had surgery so young is> because> > > his> > > > vision was greatly obstructed. there was no other option, i> know> > > my> > > > doctor says that every doctor does surgery at different times> and> > > for> > > > various reasons, and also

various surgeries, all depending on> > > > severity and degree of BPES... Anyway i just wanted to welcome> > > you> > > > and there are a great bunch of individuals with many different> > > > stories and surgeries or lack there of> > > >> > > > my advice is to get all the Dr.'s opinions you are comfortable> > > with,> > > > it also helps if someone from this group shares the same doctor> > > you> > > > do as they can then tell you their own experience..... so that> is> > > why> > > > i asked where you are from. what is your sons name?> > > >> > > > anyway hope i was a wee bit helpful> > > >> > > > tonikka (lynden age 9)> > > > edmonton alberta canada> > > > On 4-Mar-07, at 1:53 PM, sarah_skehan

wrote:> > > >> > > > > My 5 month old son was just diagnosed with BPES. There is no> > > > > history on either side and this is our first child. We had> never> > > > > heard of this condition, all we knew was he didn't open his> eyes> > > > > very wide. His pediatrician referred us to a local> > > ophthalmologist,> > > > > who explained his findings and recommended surgery. I'm sure> many> > > > > of you can relate to the devastation and fear that we are> going> > > > > through. The more information I find, the more questions I> have.> > > > > I'm trying to stay positive but so far the past 3 days have> been> > > > > very tough. We have spent the past 5 months feeling so> blessed,> > > > > taking hundreds of

pictures, and just being so happy. I feel> like> > > > > that was all taken away from me in the blink of an eye. I> > > certainly> > > > > don't enjoy him any less but all I can think of now is the> > > hardships> > > > > he will endure and I feel so helpless. It has been a> > > rollercoaster> > > > > ride. I have been finding info and looking at pictures that> both> > > > > encourage me, and scare me. There seems to be such a> difference> > > in> > > > > individual results. The ophthalmologist we are seeing> recommends> > > > > doing surgery in the next couple months because his vision> does> > > not> > > > > seem to have been affected yet. He was open about the fact> that> > > the> > > >

> procedure may have to be repeated. He explained the frontal> sling> > > > > procedure by saying he would make 3 incesions above his brow.> > > I've> > > > > also seen this done using the forehead for attatchment. Can> > > anyone> > > > > explain the benefits of either way? It's also been> recommended> > > that> > > > > we close the space between his eyes using the y to v> procedure> > > and> > > > > that we might as well do that at the same time. It seems> that not> > > > > many people opt to do this so young. They say it's an easy> > > > > procedure and the surgeon has done between 100-125. The> surgery> > > > > seems to be such an art. If anyone has a surgeon they swore> by, I> > > > > would travel the

world to give him the very best.> > > > > Any advice would be greatly appreciated.> > > > > > > > > >> > > > >> > > > >> > > >> > > >> > > > Tonikka & Chris> > > > check out our blog> > > > www.nottynurse.blogspot.com> > > >> > > >> > > > > > > >> > >> > >> > >> >> >> > Tonikka & Chris> > check out our blog> > www.nottynurse.blogspot.com> >> >> > > >>>> Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com

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[Guest guest]

I just put a couple of pictures on. They are under Donovan. Every

day seems to be getting a little easier but I suppose we haven't hit

the worst times yet. Thanks for your support!

> > > > >

> > > > > > My 5 month old son was just diagnosed with BPES. There

is no

> > > > > > history on either side and this is our first child. We

had

> > never

> > > > > > heard of this condition, all we knew was he didn't open

his

> > eyes

> > > > > > very wide. His pediatrician referred us to a local

> > > > ophthalmologist,

> > > > > > who explained his findings and recommended surgery. I'm

sure

> > many

> > > > > > of you can relate to the devastation and fear that we are

> > going

> > > > > > through. The more information I find, the more questions

I

> > have.

> > > > > > I'm trying to stay positive but so far the past 3 days

have

> > been

> > > > > > very tough. We have spent the past 5 months feeling so

> > blessed,

> > > > > > taking hundreds of pictures, and just being so happy. I

feel

> > like

> > > > > > that was all taken away from me in the blink of an eye. I

> > > > certainly

> > > > > > don't enjoy him any less but all I can think of now is

the

> > > > hardships

> > > > > > he will endure and I feel so helpless. It has been a

> > > > rollercoaster

> > > > > > ride. I have been finding info and looking at pictures

that

> > both

> > > > > > encourage me, and scare me. There seems to be such a

> > difference

> > > > in

> > > > > > individual results. The ophthalmologist we are seeing

> > recommends

> > > > > > doing surgery in the next couple months because his

vision

> > does

> > > > not

> > > > > > seem to have been affected yet. He was open about the

fact

> > that

> > > > the

> > > > > > procedure may have to be repeated. He explained the

frontal

> > sling

> > > > > > procedure by saying he would make 3 incesions above his

brow.

> > > > I've

> > > > > > also seen this done using the forehead for attatchment.

Can

> > > > anyone

> > > > > > explain the benefits of either way? It's also been

> > recommended

> > > > that

> > > > > > we close the space between his eyes using the y to v

> > procedure

> > > > and

> > > > > > that we might as well do that at the same time. It seems

> > that not

> > > > > > many people opt to do this so young. They say it's an

easy

> > > > > > procedure and the surgeon has done between 100-125. The

> > surgery

> > > > > > seems to be such an art. If anyone has a surgeon they

swore

> > by, I

> > > > > > would travel the world to give him the very best.

> > > > > > Any advice would be greatly appreciated.

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > > Tonikka & Chris

> > > > > check out our blog

> > > > > www.nottynurse.blogspot.com

> > > > >

> > > > >

> > > > > 

> > > > >

> > > >

> > > >

> > > >

> > >

> > >

> > > Tonikka & Chris

> > > check out our blog

> > > www.nottynurse.blogspot.com

> > >

> > >

> > > 

> > >

> >

> >

> >

>

>

> Tonikka & Chris

> check out our blog

> www.nottynurse.blogspot.com

>

>

> 

>

[Guest guest]

ohhh he is so cute, he reminds me of lynden 2 the tee with his eyes..... its amazing how many of the children resemble each other!...... TOO CUTE FOR WORD HE IS, lucky mom...On 6-Mar-07, at 10:19 PM, sarah_skehan wrote:I just put a couple of pictures on. They are under Donovan. Every day seems to be getting a little easier but I suppose we haven't hit the worst times yet. Thanks for your support!> > > > >> > > > > > My 5 month old son was just diagnosed with BPES. There is no> > > > > > history on either side and this is our first child. We had> > never> > > > > > heard of this condition, all we knew was he didn't open his> > eyes> > > > > > very wide. His pediatrician referred us to a local> > > > ophthalmologist,> > > > > > who explained his findings and recommended surgery. I'm sure> > many> > > > > > of you can relate to the devastation and fear that we are> > going> > > > > > through. The more information I find, the more questions I> > have.> > > > > > I'm trying to stay positive but so far the past 3 days have> > been> > > > > > very tough. We have spent the past 5 months feeling so> > blessed,> > > > > > taking hundreds of pictures, and just being so happy. I feel> > like> > > > > > that was all taken away from me in the blink of an eye. I> > > > certainly> > > > > > don't enjoy him any less but all I can think of now is the> > > > hardships> > > > > > he will endure and I feel so helpless. It has been a> > > > rollercoaster> > > > > > ride. I have been finding info and looking at pictures that> > both> > > > > > encourage me, and scare me. There seems to be such a> > difference> > > > in> > > > > > individual results. The ophthalmologist we are seeing> > recommends> > > > > > doing surgery in the next couple months because his vision> > does> > > > not> > > > > > seem to have been affected yet. He was open about the fact> > that> > > > the> > > > > > procedure may have to be repeated. He explained the frontal> > sling> > > > > > procedure by saying he would make 3 incesions above his brow.> > > > I've> > > > > > also seen this done using the forehead for attatchment. Can> > > > anyone> > > > > > explain the benefits of either way? It's also been> > recommended> > > > that> > > > > > we close the space between his eyes using the y to v> > procedure> > > > and> > > > > > that we might as well do that at the same time. It seems> > that not> > > > > > many people opt to do this so young. They say it's an easy> > > > > > procedure and the surgeon has done between 100-125. The> > surgery> > > > > > seems to be such an art. If anyone has a surgeon they swore> > by, I> > > > > > would travel the world to give him the very best.> > > > > > Any advice would be greatly appreciated.> > > > > > > > > > > >> > > > > >> > > > > >> > > > >> > > > >> > > > > Tonikka & Chris> > > > > check out our blog> > > > > www.nottynurse.blogspot.com> > > > >> > > > >> > > > > > > > > >> > > >> > > >> > > >> > >> > >> > > Tonikka & Chris> > > check out our blog> > > www.nottynurse.blogspot.com> > >> > >> > > > > >> >> >> > > > > Tonikka & Chris> check out our blog> www.nottynurse.blogspot.com> > > > Tonikka & Chrischeck out our blogwww.nottynurse.blogspot.com