RE: A few questions from a novice

[Guest guest]

Our daugther was about 3 mths when we notice somethig was " quite " right ..... had her first surgery at 10mths..... she has had 3 to date .... other because infection had taken over.... so redo's ... on the sling .. with swimming she was fine when she was younger...... before surgry used lubricate.... over her eyes..... so the w ater would basically bead off her lids.....etc: .... And we d o the same know lube.. her eyes before the pool~.......

[Guest guest]

See that's the one problem I just can't seem to understand....my daughter can blink, she doesn't have headaches (that I know of), her eyes appear normal, but yet the dr tells me she has Bleph...There has been no talk of surgery and every email I have received all the children have had to have surgery or are scheduled for surgery. Emmy's genetics doc doesn't need to see her until she is three!!! She looks around the room at everything and responds to what she sees. lcgosport <lcgosport@...> wrote:

Hi there,Our daughter Holly who is five months old was diagnosed with Bleph last Wednesday and it came as a shock because no-one in our familyhas it. She is probably going to have her first operation when shestarts walking and the other one aged 5 or 6.A few things; (Sorry if they sound stupid but we are beginners)Can I take her swimming even though she can't blink? Do other sufferers blink and can they after operations?Are there any tips to coping with a baby/toddler with Bleph?It would be great to speak to someone else with a baby that is going through the same feelings we are.ThanksLucy (Hampshire, UK)

[Guest guest]

Another story........

Ours little girl had very severe case. We needed the lift right away. We decided on the second surgery when she was turning three for self-esteem reasons also. We consulted geneticists and pediatricians regarding the rate of acceleration on the growth of the head (which slows down dramatically by then) and found it the right time for us.

I can say it has made a world of difference. It used to be every day with comments about her and she was starting to feel bad about herself. Since the surgery, there has been nothing said. We will probably get more cosmetic surgeries when she is 10 too. FYI, they were covered by insurance in the US.

Go with your heart. We are all in this together!

Best,

Pam

Gwyneth's Mommy.

[Guest guest]

who r u

[Guest guest]

who r u

[Guest guest]

Hi Amy,

Can I ask?....why

did the dtr want you to see a geneticist? I mean, what led your dtr to think that your child has bleph? Our daughter’s eye’s were

very small, we just thought it was a “newborn thing” until her 3

months checkup…that’s when I knew that her eyes should look big and

round (like my other babies), but hers were small slits for openings and she

tipped her head up to see. But she

otherwise was normal and interactive and saw everything. The dtr sent

us to a geneticist who diagnosed Bleph (no blood test

to confirm this). We and our dtr didn’t know anything about Bleph

before that. She’s 5 yrs old

now...no surgeries.... (no headaches, no developmental

problems) her vision is not impaired due to bleph and

she won’t need surgery until her face is more fully formed (when she is

around 10), then it is for cosmetics only.

I read of all of these surgeries, too, and assume that they are for

vision reasons. At least I hope

that is why they are being done at such young ages. Our daugther’s

face/skull has changed/elongated so much in the last 5 years and will continue

to for another 5 or so years that I wouldn’t want to start cosmetic

surgeries until the dtrs have more of a ‘final

product’ to work with...but anyway…it sounds like you’re not

sure your child has bleph and maybe you need to get

more answers from your dtr…or a second opinion.

hope this

helps and write back to let us know…Sheila (daughter of in Iowa, USA)

Re: blepharophimosis A

few questions from a novice

See that's the one problem I just can't seem to

understand....my daughter can blink, she doesn't have headaches (that I know

of), her eyes appear normal, but yet the dr tells me she has Bleph...There has

been no talk of surgery and every email I have received all the children have

had to have surgery or are scheduled for surgery. Emmy's genetics doc

doesn't need to see her until she is three!!! She looks around the room

at everything and responds to what she sees.

lcgosport

<lcgosport@...> wrote:

Hi there,

Our daughter Holly who is five months old was

diagnosed with Bleph

last Wednesday and it came as a shock because

no-one in our family

has

it. She is probably going to have her first

operation when she

starts

walking and the other one aged 5 or 6.

A few things; (Sorry if they sound stupid but we

are beginners)

Can I take her swimming even though she can't

blink? Do other

sufferers blink and can they after operations?

Are there any tips to coping with a baby/toddler

with Bleph?

It would be great to speak to someone else with a

baby that is going

through the same feelings we are.

Thanks

Lucy (Hampshire, UK)

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[Guest guest]

United Healthcare.

What really matters though is when you are consulting with your oculoplastic surgeon, that his staff let you know if it is covered or not. For example, Dr. Katowitz people said it was covered. It should be. It is not just cosmetic. It is to better the vision by expanding the eyes.

[Guest guest]

Sheila,

When I took Emmy for her 1 month check up, the pediatrician noticed her right eye lid drooped a little. So she sent me to the opthamologist. He checked her eyes and said she was severely farsighted and prescribed glasses for her. Then on her three month checkup with the ped dr, she wanted Emmy to see the genetics clinic because she wasn't satisfied with just the glasses and ordered a blood test to check for microphymalia. Then we went to the clinic and that doc said she had bleph....They also said that the would have to eventually do surgery IF the eyelid hinder her vision. So far she has not shown any side effects of children with Bleph...she doesn't raise her head to see anything...she just looks at everything straight on...also her eyes look normal for a shild her age. Atleast to me they do. I've compare her pics with my other kids and she doesn't look any different....I think I should get a second opinion, but my husband said that

the doc she saw was the chief of the department, so he must know what he is talking about...I'm not so sure...mathias <mathias@...> wrote:

Hi Amy,

Can I ask?....why did the dtr want you to see a geneticist? I mean, what led your dtr to think that your child has bleph? Our daughter’s eye’s were very small, we just thought it was a “newborn thing” until her 3 months checkup…that’s when I knew that her eyes should look big and round (like my other babies), but hers were small slits for openings and she tipped her head up to see. But she otherwise was normal and interactive and saw everything. The dtr sent us to a geneticist who diagnosed Bleph (no blood test to confirm this). We and our dtr didn’t know anything about Bleph before that. She’s 5 yrs old now...no surgeries.... (no headaches, no developmental problems) her vision is not impaired due to bleph and she won’t need surgery until her face is more fully formed (when she is around 10), then it is for cosmetics only. I read of all of these surgeries, too, and assume that they are for vision reasons. At least I hope that is why they are being done at such young ages. Our daugther’s face/skull has changed/elongated so much in the last 5 years and will continue to for another 5 or so years that I wouldn’t want to start cosmetic surgeries until the dtrs have more of a ‘final product’ to work with...but anyway…it sounds like you’re not sure your child has bleph and maybe you need to get more answers from your dtr…or a second opinion. hope this helps and write back to let us know…Sheila (daughter of in Iowa, USA)

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Amy HinchmanSent: Monday, June 27, 2005 9:49 PMblepharophimosis Subject: Re: blepharophimosis A few questions from a novice

See that's the one problem I just can't seem to understand....my daughter can blink, she doesn't have headaches (that I know of), her eyes appear normal, but yet the dr tells me she has Bleph...There has been no talk of surgery and every email I have received all the children have had to have surgery or are scheduled for surgery. Emmy's genetics doc doesn't need to see her until she is three!!! She looks around the room at everything and responds to what she sees. lcgosport <lcgosport@...> wrote:

Hi there,Our daughter Holly who is five months old was diagnosed with Bleph last Wednesday and it came as a shock because no-one in our familyhas it. She is probably going to have her first operation when shestarts walking and the other one aged 5 or 6.A few things; (Sorry if they sound stupid but we are beginners)Can I take her swimming even though she can't blink? Do other sufferers blink and can they after operations?Are there any tips to coping with a baby/toddler with Bleph?It would be great to speak to someone else with a baby that is going through the same feelings we are.ThanksLucy (Hampshire, UK)

[Guest guest]

Dear Sheila,

Just a note on surgery - our son was having to tilt

his head way back to see - which is not good for the

neck. It was also effecting gross motor skills as it

was impairing his sight. But if the surgery had been

done in the U.S. it still would have been considered

cosmetic by our insurance company. (I checked on all

of that before we knew they were going to do the

surgery in Korea.)

But I also wanted to add that doing the surgery " only

for cosmetic reasons " is in my opinion very important

for some children too. In one of our reports from

Korea it said that Micah did not like going to

preschool because the other children made fun of his

eyes. (This was at age three!) His appearance was

effecting his self-esteem at a very young age. One

month after his surgery we received a report saying

Micah was " thrilled with his 'new big eyes' and had

found a great new self confidence " . So even if he was

not having to tilt and the bleph was not interfering

with his sight, we would have done the surgery for

him.

All families have to make the decision they feel is

best for their family and their child. Just wanted to

offer some insight as to why we still would have done

the surgery at a young age.

April

--- mathias <mathias@...> wrote:

> Hi Amy,

> Can I ask?....why did the dtr want you to see a

> geneticist? I mean,

> what led your dtr to think that your child has

> bleph? Our daughter's

> eye's were very small, we just thought it was a

> " newborn thing " until

> her 3 months checkup.that's when I knew that her

> eyes should look big

> and round (like my other babies), but hers were

> small slits for openings

> and she tipped her head up to see. But she

> otherwise was normal and

> interactive and saw everything. The dtr sent us to

> a geneticist who

> diagnosed Bleph (no blood test to confirm this). We

> and our dtr didn't

> know anything about Bleph before that. She's 5 yrs

> old now...no

> surgeries.... (no headaches, no developmental

> problems) her vision is

> not impaired due to bleph and she won't need surgery

> until her face is

> more fully formed (when she is around 10), then it

> is for cosmetics

> only. I read of all of these surgeries, too, and

> assume that they are

> for vision reasons. At least I hope that is why

> they are being done at

> such young ages. Our daugther's face/skull has

> changed/elongated so

> much in the last 5 years and will continue to for

> another 5 or so years

> that I wouldn't want to start cosmetic surgeries

> until the dtrs have

> more of a 'final product' to work with...but

> anyway.it sounds like

> you're not sure your child has bleph and maybe you

> need to get more

> answers from your dtr.or a second opinion. hope

> this helps and write

> back to let us know.Sheila (daughter of in

> Iowa, USA)

>

> Re: blepharophimosis A few questions from

> a novice

>

> See that's the one problem I just can't seem to

> understand....my

> daughter can blink, she doesn't have headaches (that

> I know of), her

> eyes appear normal, but yet the dr tells me she has

> Bleph...There has

> been no talk of surgery and every email I have

> received all the children

> have had to have surgery or are scheduled for

> surgery. Emmy's genetics

> doc doesn't need to see her until she is three!!!

> She looks around the

> room at everything and responds to what she sees.

>

> lcgosport <lcgosport@...> wrote:

> Hi there,

>

> Our daughter Holly who is five months old was

> diagnosed with Bleph

> last Wednesday and it came as a shock because no-one

> in our family

> has

> it. She is probably going to have her first

> operation when she

> starts

> walking and the other one aged 5 or 6.

>

> A few things; (Sorry if they sound stupid but we are

> beginners)

>

> Can I take her swimming even though she can't blink?

> Do other

> sufferers blink and can they after operations?

>

> Are there any tips to coping with a baby/toddler

> with Bleph?

>

> It would be great to speak to someone else with a

> baby that is going

> through the same feelings we are.

>

> Thanks

> Lucy (Hampshire, UK)

>

>

>

>

>

>

[Guest guest]

Hi My name is I am the mother of Hannah who happens to be the

second generation with BPES in our family. Hannah's doctors also

advise the same no surgery until her facial features develope around

school age. Which at first I was a little concerned about but her

vision is not obsturcted so she is developing right along with her

14 month old cousin like a pro. It was nice to hear a simalr story

and it made me feel good! Thanks!

Angie

> Hi there,

>

> Our daughter Holly who is five months old was diagnosed with Bleph

> last Wednesday and it came as a shock because no-one in our family

> has

> it. She is probably going to have her first operation when she

> starts

> walking and the other one aged 5 or 6.

>

> A few things; (Sorry if they sound stupid but we are beginners)

>

> Can I take her swimming even though she can't blink? Do other

> sufferers blink and can they after operations?

>

> Are there any tips to coping with a baby/toddler with Bleph?

>

> It would be great to speak to someone else with a baby that is

going

> through the same feelings we are.

>

> Thanks

> Lucy (Hampshire, UK)

>

>

>

>

>

>

[Guest guest]

When my daughter was born both the head of pediatrics and the head geneticist at New York Hospital came to my hospital bed to let me know they thought my daughter had some form of mental retardation. They tested her and within a week we got the results that she was normal. A month later I saw a pediatric ophthalmologist who told me about her BPES.

This was three years ago at one of New York City's most prestigious hospitals. Go with your gut, see other doctors and get a second opinion.

Best to you all,

Pam

Gwyneth's Mommy

[Guest guest]

I have Anthem BCBS and eventhough it was a small struggle, we had a good enough surgeon that was able to convince the insurance that it was indeed medical and not cosmetic. Our son's vision was clearly effected as it was covering his pupil. My new issue is that his vision is still restricted in that his head tilts significantly. He is almost ten months old and can not sit up yet without falling over. I know he has Bleph but no one in my area will even consider that diagnosis (I have no idea why!) And I def. don't have the $ to got to Belgium. I wish there was some sort of fund or grant for tests like this...

Rae Ann april Eisele <aprileisele@...> wrote:

Dear Sheila,Just a note on surgery - our son was having to tilthis head way back to see - which is not good for theneck. It was also effecting gross motor skills as itwas impairing his sight. But if the surgery had beendone in the U.S. it still would have been consideredcosmetic by our insurance company. (I checked on allof that before we knew they were going to do thesurgery in Korea.) But I also wanted to add that doing the surgery "onlyfor cosmetic reasons" is in my opinion very importantfor some children too. In one of our reports fromKorea it said that Micah did not like going topreschool because the other children made fun of hiseyes. (This was at age three!) His appearance waseffecting his self-esteem at a very young age. Onemonth after his surgery we

received a report sayingMicah was "thrilled with his 'new big eyes' and hadfound a great new self confidence". So even if he wasnot having to tilt and the bleph was not interferingwith his sight, we would have done the surgery forhim.All families have to make the decision they feel isbest for their family and their child. Just wanted tooffer some insight as to why we still would have donethe surgery at a young age. April--- mathias <mathias@...> wrote:> Hi Amy, > Can I ask?....why did the dtr want you to see a> geneticist? I mean,> what led your dtr to think that your child has> bleph? Our daughter's> eye's were very small, we just thought it was a> "newborn thing" until> her 3 months checkup.that's when I knew that her> eyes should look big> and round (like my other babies), but hers

were> small slits for openings> and she tipped her head up to see. But she> otherwise was normal and> interactive and saw everything. The dtr sent us to> a geneticist who> diagnosed Bleph (no blood test to confirm this). We> and our dtr didn't> know anything about Bleph before that. She's 5 yrs> old now...no> surgeries.... (no headaches, no developmental> problems) her vision is> not impaired due to bleph and she won't need surgery> until her face is> more fully formed (when she is around 10), then it> is for cosmetics> only. I read of all of these surgeries, too, and> assume that they are> for vision reasons. At least I hope that is why> they are being done at> such young ages. Our daugther's face/skull has> changed/elongated so> much in the last 5 years and will continue to

for> another 5 or so years> that I wouldn't want to start cosmetic surgeries> until the dtrs have> more of a 'final product' to work with...but> anyway.it sounds like> you're not sure your child has bleph and maybe you> need to get more> answers from your dtr.or a second opinion. hope> this helps and write> back to let us know.Sheila (daughter of in> Iowa, USA)> > Re: blepharophimosis A few questions from> a novice> > See that's the one problem I just can't seem to> understand....my> daughter can blink, she doesn't have headaches (that> I know of), her> eyes

appear normal, but yet the dr tells me she has> Bleph...There has> been no talk of surgery and every email I have> received all the children> have had to have surgery or are scheduled for> surgery. Emmy's genetics> doc doesn't need to see her until she is three!!! > She looks around the> room at everything and responds to what she sees. > > lcgosport <lcgosport@...> wrote: > Hi there,> > Our daughter Holly who is five months old was> diagnosed with Bleph > last Wednesday and it came as a shock because no-one> in our family> has > it. She is probably going to have her first> operation when she> starts > walking and the other one aged 5 or 6.> > A few things; (Sorry if they sound stupid but we are> beginners)> > Can I take her swimming even though she can't

blink?> Do other > sufferers blink and can they after operations?> > Are there any tips to coping with a baby/toddler> with Bleph?> > It would be great to speak to someone else with a> baby that is going > through the same feelings we are.> > Thanks> Lucy (Hampshire, UK)> > > > > >

[Guest guest]

I guess my family has been lucky. Since my son was born 12 years ago we have never had any problems with our insurance not covering surgeries. Shortly after my youngest son was born the company my husband worked for closed down and we had lost our insurance. When he got a new job and picked up that insurance the surgeries were still covered. Never had any problems with either of my sons surgeries.

[Guest guest]

Our daughter Kenley also has BPES. She can blink with no problem. However, with kenley we have to be very cautious of eye infections due to poor ability to produce tears and keep eyes moist. lcgosport <lcgosport@...> wrote:

Hi there,Our daughter Holly who is five months old was diagnosed with Bleph last Wednesday and it came as a shock because no-one in our familyhas it. She is probably going to have her first operation when shestarts walking and the other one aged 5 or 6.A few things; (Sorry if they sound stupid but we are beginners)Can I take her swimming even though she can't blink? Do other sufferers blink and can they after operations?Are there any tips to coping with a baby/toddler with Bleph?It would be great to speak to someone else with a baby that is going through the same feelings we are.ThanksLucy (Hampshire, UK)

[Guest guest]

Hi Lucy,

My daughter was diagnosed with BPES at 5 weeks old, the first in our family, and I know that there is a steep learning curve where you are right now.

I had to email back because did not blink either. I remember asking her pediatrician at her one week check-up (when everyone but me thought it was just " swelling from birth " -- mamma knows better!). I said, " Do newborns blink? Because she doesn't. " And our pediatrician, a wonderful doc with many many years of experience looked closely at and said, " You know, I don't know if they do or not! " Anyway, did begin blinking, though I can't remember when. My guess is that Holly will eventually as well. When they are young many kids with BPES roll their eyes back briefly to get them moist. Swimming was not a problem, though you may notice from many posts on this board that some people with BPES do suffer eye dryness, and always likes to have a towel handy to dry her eyes when she gets wet. However, she managed to learn to deal with it for swimming lessons.

Best of luck to you as you figure out what works best for Holly! Dawn in Washington state

From: " lcgosport " <lcgosport@...>

Reply-blepharophimosis

Date: Mon, 27 Jun 2005 20:58:52 -0000

blepharophimosis

Subject: blepharophimosis A few questions from a novice

Hi there,

Our daughter Holly who is five months old was diagnosed with Bleph

last Wednesday and it came as a shock because no-one in our family

has

it. She is probably going to have her first operation when she

starts

walking and the other one aged 5 or 6.

A few things; (Sorry if they sound stupid but we are beginners)

Can I take her swimming even though she can't blink? Do other

sufferers blink and can they after operations?

Are there any tips to coping with a baby/toddler with Bleph?

It would be great to speak to someone else with a baby that is going

through the same feelings we are.

Thanks

Lucy (Hampshire, UK)

[Guest guest]

Our sons looked straight ahead until they were walking ...that is when we had a problem with them seeing mostly to the right and left ....because their eye opening was so tiny they had trouble seeing all around them. Amy Hinchman <mamahinch@...> wrote:

Sheila,

When I took Emmy for her 1 month check up, the pediatrician noticed her right eye lid drooped a little. So she sent me to the opthamologist. He checked her eyes and said she was severely farsighted and prescribed glasses for her. Then on her three month checkup with the ped dr, she wanted Emmy to see the genetics clinic because she wasn't satisfied with just the glasses and ordered a blood test to check for microphymalia. Then we went to the clinic and that doc said she had bleph....They also said that the would have to eventually do surgery IF the eyelid hinder her vision. So far she has not shown any side effects of children with Bleph...she doesn't raise her head to see anything...she just looks at everything straight on...also her eyes look normal for a shild her age. Atleast to me they do. I've compare her pics with my other kids and she doesn't look any different....I think I should get a second opinion, but my husband said that

the doc she saw was the chief of the department, so he must know what he is talking about...I'm not so sure...mathias <mathias@...> wrote:

Hi Amy,

Can I ask?....why did the dtr want you to see a geneticist? I mean, what led your dtr to think that your child has bleph? Our daughter’s eye’s were very small, we just thought it was a “newborn thing” until her 3 months checkup…that’s when I knew that her eyes should look big and round (like my other babies), but hers were small slits for openings and she tipped her head up to see. But she otherwise was normal and interactive and saw everything. The dtr sent us to a geneticist who diagnosed Bleph (no blood test to confirm this). We and our dtr didn’t know anything about Bleph before that. She’s 5 yrs old now...no surgeries.... (no headaches, no developmental problems) her vision is not impaired due to bleph and she won’t need surgery until her face is more fully formed (when she is around 10), then it is for cosmetics only. I read of all of these surgeries, too, and assume that they are for vision reasons. At least I hope that is why they are being done at such young ages. Our daugther’s face/skull has changed/elongated so much in the last 5 years and will continue to for another 5 or so years that I wouldn’t want to start cosmetic surgeries until the dtrs have more of a ‘final product’ to work with...but anyway…it sounds like you’re not sure your child has bleph and maybe you need to get more answers from your dtr…or a second opinion. hope this helps and write back to let us know…Sheila (daughter of in Iowa, USA)

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Amy HinchmanSent: Monday, June 27, 2005 9:49 PMblepharophimosis Subject: Re: blepharophimosis A few questions from a novice

See that's the one problem I just can't seem to understand....my daughter can blink, she doesn't have headaches (that I know of), her eyes appear normal, but yet the dr tells me she has Bleph...There has been no talk of surgery and every email I have received all the children have had to have surgery or are scheduled for surgery. Emmy's genetics doc doesn't need to see her until she is three!!! She looks around the room at everything and responds to what she sees. lcgosport <lcgosport@...> wrote:

Hi there,Our daughter Holly who is five months old was diagnosed with Bleph last Wednesday and it came as a shock because no-one in our familyhas it. She is probably going to have her first operation when shestarts walking and the other one aged 5 or 6.A few things; (Sorry if they sound stupid but we are beginners)Can I take her swimming even though she can't blink? Do other sufferers blink and can they after operations?Are there any tips to coping with a baby/toddler with Bleph?It would be great to speak to someone else with a baby that is going through the same feelings we are.ThanksLucy (Hampshire, UK)

[Guest guest]

i totally agree! i have done follow up surgeries just to make them look "normal"...it is a tough decision but it was right for my kids. they hated their eyes and are now more comfortable although it didn't stop people completely from staring at them or noticing they have a problem.

april Eisele <aprileisele@...> wrote:

Dear Sheila,Just a note on surgery - our son was having to tilthis head way back to see - which is not good for theneck. It was also effecting gross motor skills as itwas impairing his sight. But if the surgery had beendone in the U.S. it still would have been consideredcosmetic by our insurance company. (I checked on allof that before we knew they were going to do thesurgery in Korea.) But I also wanted to add that doing the surgery "onlyfor cosmetic reasons" is in my opinion very importantfor some children too. In one of our reports fromKorea it said that Micah did not like going topreschool because the other children made fun of hiseyes. (This was at age three!) His appearance waseffecting his self-esteem at a very young age. Onemonth after his surgery we

received a report sayingMicah was "thrilled with his 'new big eyes' and hadfound a great new self confidence". So even if he wasnot having to tilt and the bleph was not interferingwith his sight, we would have done the surgery forhim.All families have to make the decision they feel isbest for their family and their child. Just wanted tooffer some insight as to why we still would have donethe surgery at a young age. April--- mathias <mathias@...> wrote:> Hi Amy, > Can I ask?....why did the dtr want you to see a> geneticist? I mean,> what led your dtr to think that your child has> bleph? Our daughter's> eye's were very small, we just thought it was a> "newborn thing" until> her 3 months checkup.that's when I knew that her> eyes should look big> and round (like my other babies), but hers

were> small slits for openings> and she tipped her head up to see. But she> otherwise was normal and> interactive and saw everything. The dtr sent us to> a geneticist who> diagnosed Bleph (no blood test to confirm this). We> and our dtr didn't> know anything about Bleph before that. She's 5 yrs> old now...no> surgeries.... (no headaches, no developmental> problems) her vision is> not impaired due to bleph and she won't need surgery> until her face is> more fully formed (when she is around 10), then it> is for cosmetics> only. I read of all of these surgeries, too, and> assume that they are> for vision reasons. At least I hope that is why> they are being done at> such young ages. Our daugther's face/skull has> changed/elongated so> much in the last 5 years and will continue to

for> another 5 or so years> that I wouldn't want to start cosmetic surgeries> until the dtrs have> more of a 'final product' to work with...but> anyway.it sounds like> you're not sure your child has bleph and maybe you> need to get more> answers from your dtr.or a second opinion. hope> this helps and write> back to let us know.Sheila (daughter of in> Iowa, USA)> > Re: blepharophimosis A few questions from> a novice> > See that's the one problem I just can't seem to> understand....my> daughter can blink, she doesn't have headaches (that> I know of), her> eyes

appear normal, but yet the dr tells me she has> Bleph...There has> been no talk of surgery and every email I have> received all the children> have had to have surgery or are scheduled for> surgery. Emmy's genetics> doc doesn't need to see her until she is three!!! > She looks around the> room at everything and responds to what she sees. > > lcgosport <lcgosport@...> wrote: > Hi there,> > Our daughter Holly who is five months old was> diagnosed with Bleph > last Wednesday and it came as a shock because no-one> in our family> has > it. She is probably going to have her first> operation when she> starts > walking and the other one aged 5 or 6.> > A few things; (Sorry if they sound stupid but we are> beginners)> > Can I take her swimming even though she can't

blink?> Do other > sufferers blink and can they after operations?> > Are there any tips to coping with a baby/toddler> with Bleph?> > It would be great to speak to someone else with a> baby that is going > through the same feelings we are.> > Thanks> Lucy (Hampshire, UK)> > > > > >

[Guest guest]

My situation is similar to Pam's daughter, and my daughter Lily, as

well.

There are differences of opinion on the cosmetic issues, and

everyone does need to decide what is best for them. Having said

that, I had surgery as a baby and young child because I couldn't

open my eyes sufficiently. People still said odd things to me and it

hurt, kids teased me,etc., I just got used to it. But it hurts and

it shapes who you are, and how people treat you.

Beth

> Another story........

>

> Ours little girl had very severe case. We needed the lift right

away. We

> decided on the second surgery when she was turning three for self-

esteem

> reasons also. We consulted geneticists and pediatricians

regarding the rate of

> acceleration on the growth of the head (which slows down

dramatically by then)

> and found it the right time for us.

>

> I can say it has made a world of difference. It used to be every

day with

> comments about her and she was starting to feel bad about

herself. Since the

> surgery, there has been nothing said. We will probably get more

cosmetic

> surgeries when she is 10 too. FYI, they were covered by

insurance in the US.

>

> Go with your heart. We are all in this together!

>

> Best,

>

> Pam

> Gwyneth's Mommy.

[Guest guest]

Amy

I am sort of surprised a doctor would put glasses on an infant, how

old is she?

I have been to many doctors for me and now for my daughter, lots of

them have no idea what this is. You might want to keep looking for a

doctor.

Beth

>

> Hi there,

>

> Our daughter Holly who is five months old was diagnosed with Bleph

> last Wednesday and it came as a shock because no-one in our family

> has

> it. She is probably going to have her first operation when she

> starts

> walking and the other one aged 5 or 6.

>

> A few things; (Sorry if they sound stupid but we are beginners)

>

> Can I take her swimming even though she can't blink? Do other

> sufferers blink and can they after operations?

>

> Are there any tips to coping with a baby/toddler with Bleph?

>

> It would be great to speak to someone else with a baby that is

going

> through the same feelings we are.

>

> Thanks

> Lucy (Hampshire, UK)

>

>

>

>

>

>