Re: new diagnosis 11 week old infant

[Guest guest]

My daughter had the levator frontalis suspension surgery done at 4 months but

not by an opthalmologist but by a eye surgeon. It allows her to see until she

can have surgery for the bleph around 4 or 5 yrs. Her head development and

facial development aren't enough to do other surgeries at an earlier age.

[Guest guest]

Hey there!

I am in the same situation as you with

trying to get more information and learn what bleph

is all about. This group and all

the e-mails has really helped. Our daughter is now 7 weeks and she was

diagnosed at 3 days old. Our opthamologist hasn’t given us much in terms of a time

line. I did e-mail an Oculoplastic surgeon about this though – they only do

eyes. They said they do surgery as

young as 6 months of age. They also

said that the diagnosis of blepharophimosis definitely

is considered medically necessary and not just cosmetic. This also meant that

insurance will cover the initial surgeries.

I know each case is handled individually

but it did help to get this information from them. I hope this might give you some more

information and answer a few questions.

blepharophimosis new

diagnosis 11 week old infant

Hi all,

I was so relieved to find this group. Our son was

just diagnosed last

week and we have been in a frenzy researching what

the heck bleph is!

I found encouragement just by reading the recent

posts, including

Kristy's (Kirsty's? sorry if sp wrong).

's opthalmologist is leaning toward doing the

levator frontalis

suspension soon...we see him in two weeks when

is 3 months old.

His ptosis is severe and the doc is concerned for

his visual

stimulation. is very alert and interested in

his surroundings

and cries when his eyelids can't open anymore to

see. I'm at home

still on maternity leave so I spend half the day

holding his eyelids

up so he can watch his mobile, see Larry and Bob

the tomato on tv,

look outside at the green trees, etc. He seems so

healthy and

intelligent every other way, we are so sad for him

'cause he gets

frustrated when he can't open those lids.

I am trying to get a quick second opinion at s

Hopkins since we

live in the area so am waiting on that.

My question: I was wondering if anyone knows if

the blepharophimosis -

the small eye openings - can be dealt with by

surgery in a very

young infant. The opthalm. didn't mention anything

about it at all,

just the sling surgery for his ptosis. It seems

that the surgery to

open the eyes is considered more cosmetic than

medically necessary -

is that correct?

I'm still learning what the diagnosis

means...thanks for your help!

Debbie Barfoot

[Guest guest]

Hi ,

Glad to hear you are finding the posts encouraging.

We are all blessed to have the internet to make our research

easier. My dear mum (who can't even turn on a computer) nearly tore

her hair out trying to find help/advice when i was a wee bub.

Now, here is my life of surgery in a nutshell:

Sep 77 born. I am the youngest of three. Both my parents and older

brother and sister have huge perfect blue eyes that have always been

a signature family trait. I'm the first mutation), my parents wonder

what the hell is going on, the doctors are not sure why this little

girl has merely slits for eyes and a completely flat surface between

her eyes.

Several days later, they call in an eye specialist, who basically

told my parents he is the authority and to not bother seeking second

opinions. He proceeded to tell them that there was little hope for

my eyes because they were so severe and if he were to do anything it

would be skin graphs of some kind . My Father, being a successful

business man didn't like his arrogance and swiftly took me off for

several other opinions. My parents did research and found there

were apparently 2 specialists, one in scottland (dr mustarde) and

one in the states (dr callighan sp?)who were the true authorities.

They were also told these doctors were extremely busy and difficult

to see.

So they decided to take me to Sydney first, where they had made

appointments with both an eye doctor and a plastic surgeon.

There first visit was to the eye doctor. A confident man with a

long history of treating eye conditions, greeted them. After

looking at my eyes for several minutes he said point blank " I feel

like getting up and walking out right now, there is nothing i can do

here, i dont know where to start " .

Feeling somewhat discouraged, they went to the plastic surgeon

appointment. Dr Gibson greeted them and after taking a look at me

said " you wont believe this, i am a part of a conference being held

in Sydney in a few weeks, and Dr Mustarde will be visiting from

land " -my parents were immediately rapt, as they knew of him

through their research as being one of the best two in the world.

Dr Gibson warned them - ' he may not want to see her or even

operate, if you are willing to travel back here from brisbane in a

few weeks in the hope he might see her, please do "

So my parents did fly us back, bags packed and hoped he would

agree. He did, and they filmed the whole operation. They all felt

it was one of the most successful procedures on a BPEI patient they

had seen to date, so my parents felt relieved.

Below i have done a general outline of the surgery i have had:

FIRST OPERATION - DR Mustarde (from land, operation at Sydney

children's hospital. This work was on the Blepharophimosis,

epicanthus primarily. Triangular incisisons were made in the

corners to lengthen the eye out. Also a metal post was inserted

between the eyes (bone has grown over since), the objective being,

to form a bridge so the space between my eyes was normal.

Age 2 : - SECOND OPERATION - Dr Gibson (Dr mustarde worked with

him), to perform sling operation on my eyes (to fix ptosis).

They took two pieces of muscle tissue out of legs. (leaving scar of

approx 1.5 inches each). This was used to bring my eyelids up.

Operation very successful.

Between ages of 2 and 8 -- 5 OPERATIONS - Dr Billson - These

operations were to fix a squint i had. Both my eyes, primiarly my

left eye though, especially when tired would 'wander'. They would

become lazy. These operations were successful. To this day though,

my left eye can become lazy when very tired. I try to get 9 hours

sleep a night at least (i run my own biz so its easy), otherwise my

left eye starts to look smaller/lazier than my right eye.

Age 20: 8th OPERATION - Dr (complete mental blank, get back to you),

This operation was to fix my left eye from becoming too watery and

the water would start to fill up in the lower lid and make the eye

look small. He basically opened up the eye more and extended both

eyes on each side as they were very small. This operation was

highly successful, and with make up i actually started to enjoy the

look of my eyes, even received comments on them being attractive

etc. i was over the moon!

Anyway, , i hope this helps a bit.

Kirsty McConaghy

- In blepharophimosis , " scottbarfoot "

<scottbarfoot@h...> wrote:

> Hi all,

>

> I was so relieved to find this group. Our son was just diagnosed

last

> week and we have been in a frenzy researching what the heck bleph

is!

> I found encouragement just by reading the recent posts, including

> Kristy's (Kirsty's? sorry if sp wrong).

>

> 's opthalmologist is leaning toward doing the levator

frontalis

> suspension soon...we see him in two weeks when is 3 months

old.

> His ptosis is severe and the doc is concerned for his visual

> stimulation. is very alert and interested in his

surroundings

> and cries when his eyelids can't open anymore to see. I'm at home

> still on maternity leave so I spend half the day holding his

eyelids

> up so he can watch his mobile, see Larry and Bob the tomato on tv,

> look outside at the green trees, etc. He seems so healthy and

> intelligent every other way, we are so sad for him 'cause he gets

> frustrated when he can't open those lids.

>

> I am trying to get a quick second opinion at s Hopkins since

we

> live in the area so am waiting on that.

>

> My question: I was wondering if anyone knows if the

blepharophimosis -

> the small eye openings - can be dealt with by surgery in a very

> young infant. The opthalm. didn't mention anything about it at

all,

> just the sling surgery for his ptosis. It seems that the surgery

to

> open the eyes is considered more cosmetic than medically

necessary -

> is that correct?

>

> I'm still learning what the diagnosis means...thanks for your help!

>

> Debbie Barfoot

[Guest guest]

Thanks so much for sharing your info. It helps us to not feel so

overwhelmed trying to anticipate every aspect of dealing with bleph,

including financially. We were away for a few days so I'm looking

forward to catching up on the recent posts. My husband already looked

at them and was really encouraged. This group really helps us

normalize things. Thanks everyone!

Debbie

> Hey there!

> I am in the same situation as you with trying to get more

information

> and learn what bleph is all about. This group and all the e-mails

has

> really helped. Our daughter is now 7 weeks and she was diagnosed

at 3

> days old. Our opthamologist hasn't given us much in terms of a time

> line. I did e-mail an Oculoplastic surgeon about this though - they

> only do eyes. They said they do surgery as young as 6 months of

age.

> They also said that the diagnosis of blepharophimosis definitely is

> considered medically necessary and not just cosmetic. This also

meant

> that insurance will cover the initial surgeries.

>

> I know each case is handled individually but it did help to get this

> information from them. I hope this might give you some more

information

> and answer a few questions.

>

>

> blepharophimosis new diagnosis 11 week old infant

>

> Hi all,

>

> I was so relieved to find this group. Our son was just diagnosed

last

> week and we have been in a frenzy researching what the heck bleph

is!

> I found encouragement just by reading the recent posts, including

> Kristy's (Kirsty's? sorry if sp wrong).

>

> 's opthalmologist is leaning toward doing the levator

frontalis

> suspension soon...we see him in two weeks when is 3 months

old.

> His ptosis is severe and the doc is concerned for his visual

> stimulation. is very alert and interested in his surroundings

> and cries when his eyelids can't open anymore to see. I'm at home

> still on maternity leave so I spend half the day holding his

eyelids

> up so he can watch his mobile, see Larry and Bob the tomato on tv,

> look outside at the green trees, etc. He seems so healthy and

> intelligent every other way, we are so sad for him 'cause he gets

> frustrated when he can't open those lids.

>

> I am trying to get a quick second opinion at s Hopkins since we

> live in the area so am waiting on that.

>

> My question: I was wondering if anyone knows if the

blepharophimosis -

> the small eye openings - can be dealt with by surgery in a very

> young infant. The opthalm. didn't mention anything about it at all,

> just the sling surgery for his ptosis. It seems that the surgery to

> open the eyes is considered more cosmetic than medically necessary -

> is that correct?

>

> I'm still learning what the diagnosis means...thanks for your help!

>

> Debbie Barfoot

>

>

>

>

>

>

[Guest guest]

My daughter was diagnosed at 4 days old when neither of her eyes

would open after birth. The pediatrician opened them only to find

very small openings. She sent us directly from the hospital to an eye

clinic. The doctor there then sent us to a specialty doctor at the

University of Iowa Hospitals. They determined that it would be

necessary to perform as soon as possible. At 3 weeks the procedure

was performed. Bandages were left on overnight, but as soon as they

were removed her tiny eyes opened. They had put a temporary " string "

connecting from her eyelid to her eyebrows and slit on the corner of

her eye. A more perminent and cosmetic surgery will be performed

around preschool age.

Dana-mother of 14 month old Brooklyn

> Hi all,

>

> I was so relieved to find this group. Our son was just diagnosed

last

> week and we have been in a frenzy researching what the heck bleph

is!

> I found encouragement just by reading the recent posts, including

> Kristy's (Kirsty's? sorry if sp wrong).

>

> 's opthalmologist is leaning toward doing the levator

frontalis

> suspension soon...we see him in two weeks when is 3 months

old.

> His ptosis is severe and the doc is concerned for his visual

> stimulation. is very alert and interested in his surroundings

> and cries when his eyelids can't open anymore to see. I'm at home

> still on maternity leave so I spend half the day holding his

eyelids

> up so he can watch his mobile, see Larry and Bob the tomato on tv,

> look outside at the green trees, etc. He seems so healthy and

> intelligent every other way, we are so sad for him 'cause he gets

> frustrated when he can't open those lids.

>

> I am trying to get a quick second opinion at s Hopkins since we

> live in the area so am waiting on that.

>

> My question: I was wondering if anyone knows if the

blepharophimosis -

> the small eye openings - can be dealt with by surgery in a very

> young infant. The opthalm. didn't mention anything about it at all,

> just the sling surgery for his ptosis. It seems that the surgery to

> open the eyes is considered more cosmetic than medically necessary -

> is that correct?

>

> I'm still learning what the diagnosis means...thanks for your help!

>

> Debbie Barfoot

[Guest guest]

Dana,

Hi, I am a member of this chat group, too,

and usually just read the notes that are submitted.

My almost 4 yrd

old girl, , has BPES, but hasn’t needed any surgery yet. She does wear glasses, but so far the

BPES is just affecting her physical appearance. Anyway, when I saw that you went to the University

of Iowa Hospitals, I was happily shocked. I live 40 minutes away from Iowa City and the Genetics Dept. there is where we

went to have diagnosed when she was 3 months old. So many of the families in this group

are scattered around the globe and we hear that it’s such a ‘rare’

disease (although with the number on this chat group, I’m

doubting that). Anyway, if

you live near the Iowa City area and would like to ever meet or talk

on the phone, please let me know.

’s Mom, Sheila

blepharophimosis Re:

new diagnosis 11 week old infant

My daughter was diagnosed at 4 days old when neither

of her eyes

would open after birth. The pediatrician opened

them only to find

very small openings. She sent us directly from the

hospital to an eye

clinic. The doctor there then sent us to a

specialty doctor at the

University of Iowa Hospitals. They determined that

it would be

necessary to perform as soon as possible. At 3

weeks the procedure

was performed. Bandages were left on overnight,

but as soon as they

were removed her tiny eyes opened. They had put a

temporary " string "

connecting from her eyelid to her eyebrows and

slit on the corner of

her eye. A more perminent and cosmetic surgery

will be performed

around preschool age.

Dana-mother of 14 month old Brooklyn

> Hi all,

>

> I was so relieved to find this group. Our son

was just diagnosed

last

> week and we have been in a frenzy researching

what the heck bleph

is!

> I found encouragement just by reading the

recent posts, including

> Kristy's (Kirsty's? sorry if sp wrong).

>

> 's opthalmologist is leaning toward

doing the levator

frontalis

> suspension soon...we see him in two weeks

when is 3 months

old.

> His ptosis is severe and the doc is concerned

for his visual

> stimulation. is very alert and

interested in his surroundings

> and cries when his eyelids can't open anymore

to see. I'm at home

> still on maternity leave so I spend half the

day holding his

eyelids

> up so he can watch his mobile, see Larry and

Bob the tomato on tv,

> look outside at the green trees, etc. He

seems so healthy and

> intelligent every other way, we are so sad

for him 'cause he gets

> frustrated when he can't open those lids.

>

> I am trying to get a quick second opinion at

s Hopkins since we

> live in the area so am waiting on that.

>

> My question: I was wondering if anyone knows

if the

blepharophimosis -

> the small eye openings - can be dealt

with by surgery in a very

> young infant. The opthalm. didn't mention

anything about it at all,

> just the sling surgery for his ptosis. It

seems that the surgery to

> open the eyes is considered more cosmetic

than medically necessary -

> is that correct?

>

> I'm still learning what the diagnosis

means...thanks for your help!

>

> Debbie Barfoot

[Guest guest]

Hi everyone,

after seeing david last wednesday, our dr. encouraged us to have the

surgery asap. david showed signs of poor vision (wobbly eyes when he

looked around) so last friday the sling operation was performed.

though it was hard watching him go under and also when he first came

out of surgery, it helped to keep in mind all the voices of

experience on this group- it looks worse than it is, we'll be more

traumatized than he will, etc. Thanks so much everyone!

Like your , Dana, he also had a slit cut on the outer sides of

both eyes (a lateral cathansus? smthg like that) since his eyes were

so small there was no eyelid skin to lift w/o cutting. it served to

widen his eyes as well.

he definitely is even more happy and seems to want to stay awake all

the time to see even more new things! (thus throwing off his sleeping

schedule but that is perfectly fine w/me for now!) He's been conking

out early at night from (I think) sheer overstimulation! We wait now

to see if he can make up for lost time. According to our dr. the next

step is to wait & see if his eyes are aligned by 6 months. that's

less than 3 months away so we pray david will quickly make up for

lost time.

we read w/interest all your experinces so we are continually prepared

for what may come down the road. thanks everone!

it helps a lot!

debbie

> > Hi all,

> >

> > I was so relieved to find this group. Our son was just diagnosed

> last

> > week and we have been in a frenzy researching what the heck bleph

> is!

> > I found encouragement just by reading the recent posts, including

> > Kristy's (Kirsty's? sorry if sp wrong).

> >

> > 's opthalmologist is leaning toward doing the levator

> frontalis

> > suspension soon...we see him in two weeks when is 3 months

> old.

> > His ptosis is severe and the doc is concerned for his visual

> > stimulation. is very alert and interested in his

surroundings

> > and cries when his eyelids can't open anymore to see. I'm at home

> > still on maternity leave so I spend half the day holding his

> eyelids

> > up so he can watch his mobile, see Larry and Bob the tomato on

tv,

> > look outside at the green trees, etc. He seems so healthy and

> > intelligent every other way, we are so sad for him 'cause he gets

> > frustrated when he can't open those lids.

> >

> > I am trying to get a quick second opinion at s Hopkins since

we

> > live in the area so am waiting on that.

> >

> > My question: I was wondering if anyone knows if the

> blepharophimosis -

> > the small eye openings - can be dealt with by surgery in a very

> > young infant. The opthalm. didn't mention anything about it at

all,

> > just the sling surgery for his ptosis. It seems that the surgery

to

> > open the eyes is considered more cosmetic than medically

necessary -

>

> > is that correct?

> >

> > I'm still learning what the diagnosis means...thanks for your

help!

> >

> > Debbie Barfoot

[Guest guest]

Sheila,

It is so great to hear from you!! I live in Des Moines, IA and I

think that a talk with you would be wonderful. When Brooklyn was

diagnosed I had never heard of this disease and I thought that

meeting or talking to someone else is has gone through what I have

would be very helpful.

Brooklyn doesn't need glasses.....so far. I am glad to hear that your

daughter has not had any surgery yet. Did they say if she will need

one eventually? The first surgery was a fairly easy procedure, it is

the next one that leaves me worried. The doctor didn't show me any

before and after pictures. He said that we should have this procedure

done by preschool age since that is when appearance start to matter.

I found this all to be true when we visited my cousin who has a 4

year old son. He said that he was afraid of my daughter because her

eyes looked weird. That she looked like an alien. I think I cried all

the way home and every time that I talk about it.

Do you see an eye doctor at the UofI Hospitals?

I would love to chat more with you. Feel free to email me anytime!

Dana

> > Hi all,

> >

> > I was so relieved to find this group. Our son was just diagnosed

> last

> > week and we have been in a frenzy researching what the heck bleph

> is!

> > I found encouragement just by reading the recent posts, including

> > Kristy's (Kirsty's? sorry if sp wrong).

> >

> > 's opthalmologist is leaning toward doing the levator

> frontalis

> > suspension soon...we see him in two weeks when is 3 months

> old.

> > His ptosis is severe and the doc is concerned for his visual

> > stimulation. is very alert and interested in his

surroundings

> > and cries when his eyelids can't open anymore to see. I'm at home

> > still on maternity leave so I spend half the day holding his

> eyelids

> > up so he can watch his mobile, see Larry and Bob the tomato on

tv,

> > look outside at the green trees, etc. He seems so healthy and

> > intelligent every other way, we are so sad for him 'cause he gets

> > frustrated when he can't open those lids.

> >

> > I am trying to get a quick second opinion at s Hopkins since

we

> > live in the area so am waiting on that.

> >

> > My question: I was wondering if anyone knows if the

> blepharophimosis -

> > the small eye openings - can be dealt with by surgery in a very

> > young infant. The opthalm. didn't mention anything about it at

all,

> > just the sling surgery for his ptosis. It seems that the surgery

to

> > open the eyes is considered more cosmetic than medically

necessary -

>

> > is that correct?

> >

> > I'm still learning what the diagnosis means...thanks for your

help!

> >

> > Debbie Barfoot

>

>

>

>

>

>

[Guest guest]

Hi!!

I am so glad that your son is doing well. I just wish I could have

found this website 14 months ago so that I could have had someone to

talk to. I went into this blind. Not knowing what to expect and what

was ahead of me. Like you Deb, I think it was more traumatizing for

my self and her father than it actually was for her.

Brooklyns openings were small, but the left was worse than the right

so only one side was slit; however, they are still somewhat uneven.

Our doctor said the next surgery would be more " cosmetic " than the

first his main objective was to just get the eyes open before it

affected her brain development. The main thing is she can see and

like your son, once the surgery was done she didn't want to sleep.

She found out there was more to life than just hearing what was

around her. Before the surgery it was hard to tell if she was awake

or asleep because it was almost impossible for her to open them. Did

they have to cut a crease across the eyelid on him as well?

Hearing your story Debbie reminds me so much of my own. I am so glad

that I finally have people who I can relate to and share experiences.

Dana

> > > Hi all,

> > >

> > > I was so relieved to find this group. Our son was just

diagnosed

> > last

> > > week and we have been in a frenzy researching what the heck

bleph

> > is!

> > > I found encouragement just by reading the recent posts,

including

> > > Kristy's (Kirsty's? sorry if sp wrong).

> > >

> > > 's opthalmologist is leaning toward doing the levator

> > frontalis

> > > suspension soon...we see him in two weeks when is 3

months

> > old.

> > > His ptosis is severe and the doc is concerned for his visual

> > > stimulation. is very alert and interested in his

> surroundings

> > > and cries when his eyelids can't open anymore to see. I'm at

home

> > > still on maternity leave so I spend half the day holding his

> > eyelids

> > > up so he can watch his mobile, see Larry and Bob the tomato on

> tv,

> > > look outside at the green trees, etc. He seems so healthy and

> > > intelligent every other way, we are so sad for him 'cause he

gets

> > > frustrated when he can't open those lids.

> > >

> > > I am trying to get a quick second opinion at s Hopkins

since

> we

> > > live in the area so am waiting on that.

> > >

> > > My question: I was wondering if anyone knows if the

> > blepharophimosis -

> > > the small eye openings - can be dealt with by surgery in a

very

> > > young infant. The opthalm. didn't mention anything about it at

> all,

> > > just the sling surgery for his ptosis. It seems that the

surgery

> to

> > > open the eyes is considered more cosmetic than medically

> necessary -

> >

> > > is that correct?

> > >

> > > I'm still learning what the diagnosis means...thanks for your

> help!

> > >

> > > Debbie Barfoot

[Guest guest]

Sorry Dana, I called your daughter the wrong name. Thanks so much for

sharing your family's experience with Brooklyn!

Yes, also had a crease cut on both eyelids...actually, now that

you asked, I realize that's what those stitches are for...dumb me, i

assumed they were to anchor the other end of the string and didn't

ask the doctor. Now it makes sense, since the doc told us he had no

eyelid skin to even lift.

The doc said this procedure would last about a year. Next appt I'll

ask " then what? " Maybe he'll tell me the same as your doctor...the

next surgery will be cosmetic? Hopefully 's eyes and brain

development will be on track.

I hope Brooklyn has progressed well in her development!

:)debbie

> > > > Hi all,

> > > >

> > > > I was so relieved to find this group. Our son was just

> diagnosed

> > > last

> > > > week and we have been in a frenzy researching what the heck

> bleph

> > > is!

> > > > I found encouragement just by reading the recent posts,

> including

> > > > Kristy's (Kirsty's? sorry if sp wrong).

> > > >

> > > > 's opthalmologist is leaning toward doing the levator

> > > frontalis

> > > > suspension soon...we see him in two weeks when is 3

> months

> > > old.

> > > > His ptosis is severe and the doc is concerned for his visual

> > > > stimulation. is very alert and interested in his

> > surroundings

> > > > and cries when his eyelids can't open anymore to see. I'm at

> home

> > > > still on maternity leave so I spend half the day holding his

> > > eyelids

> > > > up so he can watch his mobile, see Larry and Bob the tomato

on

> > tv,

> > > > look outside at the green trees, etc. He seems so healthy and

> > > > intelligent every other way, we are so sad for him 'cause he

> gets

> > > > frustrated when he can't open those lids.

> > > >

> > > > I am trying to get a quick second opinion at s Hopkins

> since

> > we

> > > > live in the area so am waiting on that.

> > > >

> > > > My question: I was wondering if anyone knows if the

> > > blepharophimosis -

> > > > the small eye openings - can be dealt with by surgery in a

> very

> > > > young infant. The opthalm. didn't mention anything about it

at

> > all,

> > > > just the sling surgery for his ptosis. It seems that the

> surgery

> > to

> > > > open the eyes is considered more cosmetic than medically

> > necessary -

> > >

> > > > is that correct?

> > > >

> > > > I'm still learning what the diagnosis means...thanks for your

> > help!

> > > >

> > > > Debbie Barfoot

[Guest guest]

Thanks Debbie. Brooklyn seems to be right on track with the other

kids her age. Because the surgery was done on our children so young,

I am sure that everything will work out just fine. I am glad to here

that your son is doing great and recovering well from the surgery.

More tramatic for us parents then the child for sure. Keep us posted

on his recovery and I look forward to hearing from your family in the

future!

Dana

> > > > > Hi all,

> > > > >

> > > > > I was so relieved to find this group. Our son was just

> > diagnosed

> > > > last

> > > > > week and we have been in a frenzy researching what the heck

> > bleph

> > > > is!

> > > > > I found encouragement just by reading the recent posts,

> > including

> > > > > Kristy's (Kirsty's? sorry if sp wrong).

> > > > >

> > > > > 's opthalmologist is leaning toward doing the levator

> > > > frontalis

> > > > > suspension soon...we see him in two weeks when is 3

> > months

> > > > old.

> > > > > His ptosis is severe and the doc is concerned for his

visual

> > > > > stimulation. is very alert and interested in his

> > > surroundings

> > > > > and cries when his eyelids can't open anymore to see. I'm

at

> > home

> > > > > still on maternity leave so I spend half the day holding

his

> > > > eyelids

> > > > > up so he can watch his mobile, see Larry and Bob the tomato

> on

> > > tv,

> > > > > look outside at the green trees, etc. He seems so healthy

and

> > > > > intelligent every other way, we are so sad for him 'cause

he

> > gets

> > > > > frustrated when he can't open those lids.

> > > > >

> > > > > I am trying to get a quick second opinion at s Hopkins

> > since

> > > we

> > > > > live in the area so am waiting on that.

> > > > >

> > > > > My question: I was wondering if anyone knows if the

> > > > blepharophimosis -

> > > > > the small eye openings - can be dealt with by surgery in a

> > very

> > > > > young infant. The opthalm. didn't mention anything about it

> at

> > > all,

> > > > > just the sling surgery for his ptosis. It seems that the

> > surgery

> > > to

> > > > > open the eyes is considered more cosmetic than medically

> > > necessary -

> > > >

> > > > > is that correct?

> > > > >

> > > > > I'm still learning what the diagnosis means...thanks for

your

> > > help!

> > > > >

> > > > > Debbie Barfoot