Re: Microdeletions? - Different docotr Opinions.....

[Guest guest]

Tawnya and Dolph,

YES YES...the eye doctors had our heads spinning and our hearts pounding...surgery or no surgery?...when?...scars?...eye development?....what to do? McKenzie's first Ophtha doctor said "this is not a problem"(the BPES), "she'll just tilt her head back, she can see just fine" then went on to say that McKenzie didn't need surgery until she was 3. The plastic surgeon went along with that because he knows that waiting would allow for better cosmetic results - well I think not, McKenzie happens to have a severe case (see pictures) and coupled with her physical delays (low muscle tone) we became VERY concerned that this doctor was being negligent or just didn't care enough.Thank goodness we got a 2nd opinion and he said she needs surgery asap. We have our next apptmnt on July 12th, she is now 1 yr old. I believe this will help her to become more alert, more active, and more interested in the world around her. I understand and respect the plastic surgeon who wants the best/most material he can get to work with but this little girl needs help to see!Oh, by the way...her regular peds/doctors are for the most part useless, sorry to say. As long as she is breathing, eating and pooping they have no concerns.

THANKS,

Holmes, Albany New york

> >> >> >> > My name is joyce, I live in London near . Both my daughter> >> have> >> > BPES, they were both full term babies, Their cousin who is now 15> >> years old also> >> > a girl with BPES was born at 26 weeks and she is hale and hearty> >> with no> >> > developmental issues.> >> >> >> >> >> > The infertility issue is still been investigated, It will be best to> >> check> >> > with a geneticist.> >> >> >> > Joyce Tina and Mayowa> >> >> >>> >> >> >> >> >> >> >> >> >

[Guest guest]

,

July 12th thats soon. I hope you will get some answers to your questions and they will be able to help McKenzie, she deserves that. In The Netherlands some doctors are behaving in the old style "I'm the expert and what I say is right" and thank God many of the younger doctors have a different attitude. Therefore its always wise to have a second opinion. I to do understand specialists, aiming at the very best of results but sometimes its better to act now.

We know will have to undergo some more operations later in her life but we are very keen on not delaying things just because a certain period of time later will give better results. Its a carefull balance one has to strive for and the help of medical experts is very important.

We wish you and McKenzie all the best on July 12th.

Dolph Heideman

The Netherlands

blepharophimosis Re: Microdeletions? - Different docotr Opinions.....

Tawnya and Dolph,

YES YES...the eye doctors had our heads spinning and our hearts pounding...surgery or no surgery?...when?...scars?...eye development?....what to do? McKenzie's first Ophtha doctor said "this is not a problem"(the BPES), "she'll just tilt her head back, she can see just fine" then went on to say that McKenzie didn't need surgery until she was 3. The plastic surgeon went along with that because he knows that waiting would allow for better cosmetic results - well I think not, McKenzie happens to have a severe case (see pictures) and coupled with her physical delays (low muscle tone) we became VERY concerned that this doctor was being negligent or just didn't care enough.Thank goodness we got a 2nd opinion and he said she needs surgery asap. We have our next apptmnt on July 12th, she is now 1 yr old. I believe this will help her to become more alert, more active, and more interested in the world around her. I understand and respect the plastic surgeon who wants the best/most material he can get to work with but this little girl needs help to see!Oh, by the way...her regular peds/doctors are for the most part useless, sorry to say. As long as she is breathing, eating and pooping they have no concerns.

THANKS,

Holmes, Albany New york

> >> >> >> > My name is joyce, I live in London near . Both my daughter> >> have> >> > BPES, they were both full term babies, Their cousin who is now 15> >> years old also> >> > a girl with BPES was born at 26 weeks and she is hale and hearty> >> with no> >> > developmental issues.> >> >> >> >> >> > The infertility issue is still been investigated, It will be best to> >> check> >> > with a geneticist.> >> >> >> > Joyce Tina and Mayowa> >> >> >>> >> >> >> >> >> >> >> >> >

[Guest guest]

Dear ,

Good luck for McKenzie's appointment next week. I hope you get it

sorted out. Will you let us all know how it goes? I will keep my

fingers crossed for you guys!

Take care,

Leah and Abbie

> > >> >

> > >> > My name is joyce, I live in London near . Both my

> daughter

> > >> have

> > >> > BPES, they were both full term babies, Their cousin who is

now 15

> > >> years old also

> > >> > a girl with BPES was born at 26 weeks and she is hale and

hearty

> > >> with no

> > >> > developmental issues.

> > >> >

> > >> >

> > >> > The infertility issue is still been investigated, It will

be best

> to

> > >> check

> > >> > with a geneticist.

> > >> >

> > >> > Joyce Tina and Mayowa

> > >> >

> > >>

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >