Re: Daughter age 2 1/2 has BPES.

[Guest guest]

hi jane...

i am sorry we will miss you this weekend...but i think there is another family in apopka that you may be able to meet up with...

our daughter, hannah has had only one surgery when she was 9 weeks (frontal slings...to help lift her lids) by dr. todd goldblum in albuquerque, new mexico....he was her pediatric opthamologist while we were living in nm....we have seen 2 doctors here...1 at emory and 1 in private practice...we are going to see another in november...because one doctor thinks she needs glasses and one does not....so a third opinion might help!

as far as the surgery to open her eyes more...we decided to wait until hannah can understand and make the decision herself...it is more for aesthetic reasons unlike her first surgery...however if we had to do the surgery today (telecanthus...to open the eyes more....lenghthen the palbebral fissures) we would have dr. anderson do it (salt lake city, utah)....based on our visit, his record/experience and published paper on the 5 flap procedure....we have met 3 other surgeons and were not comfortable with the procedures they would use...

have a great weekend and maybe we will get a chance to meet up another time....

debbie (hannah and james)mirmilmar <CSpies@...> wrote:

Hi. We live in Satellite Beach.Our daughter is almost 3. So far they have said wait on any surgery. The ptosis is not obstructing her vision but, the blepharophimosis is apparently causing her to have developed astigmatism according to our local pediatric ophthalmologist.Unfortunately, we will be out of town this w/e but perhaps next time. We have been to Emory when Marissa was 15 months old but she cried throughout the entire exam. I did not gain much benefit. Who is the surgeon who has done your child's surgery? Is he/she in Atlanta? Thanks.Jane Spies

[Guest guest]

Hi Jane:

We live in Apopka. I hope that you miss hurricane Jeanne since you

are out of town this week. I hope that your home stays safe. I also

wanted to let you know about the Doctor we see. His name is Dr.

Kropp and he has an office in Deland and comes to Orlando once

a week, in downtown Orlando. We think the world of him, he was

recommended to us from our pediatric eye doctor, which is Dr. Gold.

Dr. Gold is great as well. I was also told about another Dr. named

Haas. He is also an eye surgeon, but we have never met him but

my older sister had talked to her eye doctor in Tampa and that was

who he had recommend. I've thought about contacting him just for a

second opinion but have not done so yet. My husband really likes Dr.

Kropp and trusts him. You can go to www.theeyespecialists.com and

read about their office and Dr. Kropp.

Take care and stay safe.

--- In blepharophimosis , " mirmilmar " <CSpies@c...>

wrote:

> Hi. We live in Satellite Beach.

> Our daughter is almost 3. So far they have said wait on any

surgery.

> The ptosis is not obstructing her vision but, the blepharophimosis

> is apparently causing her to have developed astigmatism according

to

> our local pediatric ophthalmologist.

> Unfortunately, we will be out of town this w/e but perhaps next

> time.

> We have been to Emory when Marissa was 15 months old but she cried

> throughout the entire exam. I did not gain much benefit.

> Who is the surgeon who has done your child's surgery? Is he/she in

> Atlanta?

> Thanks.

> Jane Spies

[Guest guest]

--- In blepharophimosis , " mirmilmar " <CSpies@c...>

wrote:

> Hi. We live in Satellite Beach.

> Our daughter is almost 3. So far they have said wait on any

surgery.

> The ptosis is not obstructing her vision but, the blepharophimosis

> is apparently causing her to have developed astigmatism according

to

> our local pediatric ophthalmologist.

> Unfortunately, we will be out of town this w/e but perhaps next

> time.

> We have been to Emory when Marissa was 15 months old but she cried

> throughout the entire exam. I did not gain much benefit.

> Who is the surgeon who has done your child's surgery? Is he/she in

> Atlanta?

> Thanks.

> Jane Spies

Hi I'm 12 and I have Blepharophimosis Ptosis Epicanthus Inversus.

I've had 3 or 4 surgeries. I was a baby when I had my fist one

because my vision was obscured. My mother has told me that when I

got home after my first surgery it was like I was coming home for the

first time. My father, my aunt, and my grandfather also have this

syndrome. When I went to the hospital for my surgery, my mom later

told me, my father was amazed because there was a mother and her

daughter who also had this syndrome, he had never seen anyone outside

his family who had it.

When I was a baby, I couldn't see because of the blepharophimosis.

My mom always had me in her arms or else I would cry because I was

scared(I couldn't see anything)which made me lose all my muscles. My

point is, if you are not willing to get her surgery at this time,

make sure she gets plenty of excercise.

I hope that you won't wory like my mom did, because everything will

be fine and she will live a normal childhood.