Re: Looking for someone who has a newborn with Bleph

[Guest guest]

Hi Amy,

You have a specialist not too far away! There is an

oculoplastic surgeon who specializes in pediatrics at

Penn State. I contacted him via email when we were

waiting for our son, Micah, to come home. (Micah was

born in S. Korea and we adopted him at age 3.) Dr.

Katowitz was very helpful and after reviewing

Micah's pre-placement photos told us he thought Micah

had a very mild case. You can see photos of him in

" the Eisele Family " album. He has had one surgery -

just four months ago. I have never seen Dr. Katowitz

in person, but have heard great things about him from

other doctors and he is close to you. I hope that can

help you a little. Praying for you and your little

one.

April

A. Katowitz, MD

Ophthalmology

Pediatric Ophthalmology

Administrative Appointment:

Director, Oculoplastic and Orbital Surgery

Practice Location(s):

Penn Eye Care

Scheie Eye Institute

51 N. 39th Street

Philadelphia, PA 19104

1-800-789-PENN (7366)

Driving Directions

Children's Hospital of Philadelphia

34th Street and Civic Center Boulevard

Philadelphia, PA 19104

1-800-789-PENN (7366)

--- mamahinch <mamahinch@...> wrote:

> My name is Amy and my daughter was born with

> Bleph....It it a new

> mutation and I was just wondering the outcome of

> kids that are born

> with the disease and what they have had to go thru.

> The doctors here

> is Pittsburgh, PA don't really have much info...They

> told me that

> is the worst case they have seen. To me she

> looks normal. I've

> seen some of the pics on the website and they look

> worse. I'm just

> wondering if was miss diagnosed. They said

> she had to wear

> glasses, but even when I don't put them on her, she

> looks araound just

> fine. No squinting or nothing...I'm going crazy on

> what I should do.

> They genetics doctor said she didn't need to be seen

> for anaother 3

> years....can anyone out there tell me anything about

> this...

>

>

>

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[Guest guest]

April,

Who performed Micah's surgery. I was confused by your email. Was it Dr. Katowitz?

Thanks,

Pam O'Brien

Gwyneth's Mom

[Guest guest]

Amy

Hi, I am from Pittsburgh though I now live in Virginia, my dad,

grandfather, me and my 11 month old daughter have BPES. There is a

good practice in PGH which you may have already heard of, their

website is www.eyelidsurgeon.com.

I would love to talk to you, how old is your baby?

Beth Gordon

540-751-1560

> My name is Amy and my daughter was born with Bleph....It it a new

> mutation and I was just wondering the outcome of kids that are

born

> with the disease and what they have had to go thru. The doctors

here

> is Pittsburgh, PA don't really have much info...They told me that

> is the worst case they have seen. To me she looks normal.

I've

> seen some of the pics on the website and they look worse. I'm

just

> wondering if was miss diagnosed. They said she had to wear

> glasses, but even when I don't put them on her, she looks araound

just

> fine. No squinting or nothing...I'm going crazy on what I should

do.

> They genetics doctor said she didn't need to be seen for anaother

3

> years....can anyone out there tell me anything about this...

[Guest guest]

Amy

I am looking through these messages while Lily is crawling around, I

am going too fast.

At the practice I mentioned, it is in Oakland. My dad has been

referred to them ( he is 63 and combined with aging his eyelids are

dropping a bit and obstructing his field of vision although he has

decided against surgery at this point) and I saw one of the doctors

there when I was a teenager. I think they have seen people with

BPES, maybe if you called them they could refer you to a pediatric

Optham. that has experience with bpes, just a thought. This is a

rare condition.

I found my daughter's pediatr. optham. by calling my optham. who

gave me three different names, I went to all three of them and foudn

the one I felt best about. I found her surgeon ( because she needed

surgery because she couldn't open her eyes at all) unfortunately

through a long series of events...

Take your time and talk to people and try to find someone you feel

okay with. I wish you all the best.

Until my daughter was born and I found this site, I had never seen

another person with BPES. Even now, I have only seen them in

pictures.

Beth

> > My name is Amy and my daughter was born with Bleph....It it a

new

> > mutation and I was just wondering the outcome of kids that are

> born

> > with the disease and what they have had to go thru. The doctors

> here

> > is Pittsburgh, PA don't really have much info...They told me

that

> > is the worst case they have seen. To me she looks

normal.

> I've

> > seen some of the pics on the website and they look worse. I'm

> just

> > wondering if was miss diagnosed. They said she had to

wear

> > glasses, but even when I don't put them on her, she looks

araound

> just

> > fine. No squinting or nothing...I'm going crazy on what I

should

> do.

> > They genetics doctor said she didn't need to be seen for

anaother

> 3

> > years....can anyone out there tell me anything about this...

[Guest guest]

Amy

I looked at pictures and I think Rose is your daughter? She is

adorable. I can understand why you are confused because she can open

her eyes and they don't look very small ( from pictures)

I have never had genetic testing, but I know I have BPES because of

my family history. Finding a good doctor who can treat the symptoms

is what matters, your daughter has corrective lenses, that treats

her farsightedness....and whatever other issues she may have you

will address with help of a good doctor. I thought your daughter was

a newborn but obviously she is a big baby now!

For example, Lily couldn't open her eyes at all, so she had to have

surgery so she could see and develop. To me, it didn't matter what

anyone calls it, it's that she has ptosis and unusually small eye

openings which limit her field of vision and also give her an

unusual appearance.

To me your daughter looks great, you can't imagine how much I wish

Lily could have opened her eyes without surgery.

I hope these messages make sense, it's hard to tell with email.

best wishes

Beth

> > > My name is Amy and my daughter was born with Bleph....It it a

> new

> > > mutation and I was just wondering the outcome of kids that are

> > born

> > > with the disease and what they have had to go thru. The

doctors

> > here

> > > is Pittsburgh, PA don't really have much info...They told me

> that

> > > is the worst case they have seen. To me she looks

> normal.

> > I've

> > > seen some of the pics on the website and they look worse. I'm

> > just

> > > wondering if was miss diagnosed. They said she had to

> wear

> > > glasses, but even when I don't put them on her, she looks

> araound

> > just

> > > fine. No squinting or nothing...I'm going crazy on what I

> should

> > do.

> > > They genetics doctor said she didn't need to be seen for

> anaother

> > 3

> > > years....can anyone out there tell me anything about this...