Re: 4yr old daughter has eye disorder

[Guest guest]

Hi Jen,

My son, Micah, had one surgery when he was almost 3

years old. The doctor did a YV Canthoplasty and

Frontalis Slings with silicone rods. You can see his

before and after pictures under " Eisele Family " .

Because he had it done in Korea (we adopted Micah) we

did not have to deal with insurance issues. At the

age of 3 Micah realized his eyes looked different and

didn't want to go to preschool anymore. After his

surgery he tells us all the time, " Micah likes his BIG

eyes! " Just our experience, but we are so glad he had

the surgery. Also, his head tilt went away

immediately and we saw a huge improvement in gross

motor skills after the surgery.

Praying for you and your little one!

April

--- scoppeyes <minsco72@...> wrote:

> hi. my 4yr old daughter has blepharophimosis. i

> keep putting off on

> surgery because i am scared to death to have to put

> her through this.

> i have taken her to several physicians for opinions

> and keep getting

> the same answer that she needs surgery. however, NO

> ONE in CT performs

> this type of surgery so next trip was to Childrens

> Hospital in Boston

> (last year) and they can do it --- our insurance

> wont cover and the

> cost of surgery there is $40k+!!!

>

> any suggestions? I also want to know the outcome of

> surgery --- is it

> effective?? is it long lasting???? please, if

> someone can provide

> some feedback i would greatly appreciate any help!!!

> i need to move on

> this since my daughter will be going to kindergarten

> next september and

> i dont want to wait until then...thanks in advance!

> ~jen

> " scoppeyes "

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

My daughter, Jordan-8, has had two surgeries. One at 15 months and the

other on June 1st of this year. Our Insurance paid for both procedures

at 100 percent. This is not a cosmetic surgery. You should see a

Ocular specialist. It is a birth defect and it can and will affect

vision if not addressed. The doctor should know how to address this to

your insurance company to get it covered. He/She will have to state

this is not strictly for cosmetic reasons. I hope this info helps.

Kim B.

scoppeyes wrote:

hi. my 4yr old daughter has blepharophimosis. i keep putting off on

surgery because i am scared to death to have to put her through this.

i have taken her to several physicians for opinions and keep getting

the same answer that she needs surgery. however, NO ONE in CT performs

this type of surgery so next trip was to Childrens Hospital in Boston

(last year) and they can do it --- our insurance wont cover and the

cost of surgery there is $40k+!!!

any suggestions? I also want to know the outcome of surgery --- is it

effective?? is it long lasting???? please, if someone can provide

some feedback i would greatly appreciate any help!!! i need to move on

this since my daughter will be going to kindergarten next september and

i dont want to wait until then...thanks in advance!

~jen

"scoppeyes"

[Guest guest]

Well done Kim

Living in England,we dont have the added worry of medical insurance,but when I read scoppeyes email I thought how awful it was to have to pay for a syndrome.Glad your on the ball and given good advice.

Beaver <kbeaver@...> wrote:

My daughter, Jordan-8, has had two surgeries. One at 15 months and the other on June 1st of this year. Our Insurance paid for both procedures at 100 percent. This is not a cosmetic surgery. You should see a Ocular specialist. It is a birth defect and it can and will affect vision if not addressed. The doctor should know how to address this to your insurance company to get it covered. He/She will have to state this is not strictly for cosmetic reasons. I hope this info helps.Kim B.scoppeyes wrote: hi. my 4yr old daughter has blepharophimosis. i keep putting off on surgery because i am scared to death to have to put her through this. i have taken her to several physicians for opinions and keep getting the same answer that she needs surgery. however, NO ONE in CT performs this type of surgery so next trip was to Childrens Hospital in Boston (last year) and they can do it --- our insurance wont cover and the cost of surgery there is $40k+!!! any suggestions? I also want to know the outcome of surgery --- is it effective?? is it long lasting???? please, if someone can provide some feedback i would greatly appreciate any help!!! i need to move on this since my daughter will be going to kindergarten next september and i dont want to wait until then...thanks in

advance!~jen"scoppeyes"

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[Guest guest]

Jen,

> any suggestions? I also want to know the outcome of surgery --- is it

> effective?? is it long lasting????

Which surgery are you referring to? The ptosis correction surgery is

usually (more often than not) effective, and the canthoplasty is almost

always effective. Sometimes the ptosis sling needs re-doing on one or

both eyes, either after the canthoplasty (if the original lift was done

very early, because the eyelids are now a different width) or because it

needs re-adjustment (fiddly, very difficult to judge the right degree of

lift ther first time). As to whether it is long lasting, my ptosis lift

(he got it right, first time) has lasted 37 years so far, so I guess so!

Regards,

Rob W

Oz

[Guest guest]

Hi Jen My son Ethan has BPES and had surgery when he was 2. It isnt nice to

put our little ones through surgery butmy advice is for you to do it. They

bounce back unbelievabley quickly and honestly i think it upsets us more

than them!!!

The difference to my son after surgery was incredible, He has photos on the

site, before and after.. as do lots of our kids so i urge you to go in and

look for your self. It IS a scary thing but i am really pleased i went

through with the surgery. I have never had any regrets, and the younger the

easier it is.

Hope this helps and you have heaps of support from all of us in the group.

Leah

blepharophimosis 4yr old daughter has eye disorder

> hi. my 4yr old daughter has blepharophimosis. i keep putting off on

> surgery because i am scared to death to have to put her through this.

> i have taken her to several physicians for opinions and keep getting

> the same answer that she needs surgery. however, NO ONE in CT performs

> this type of surgery so next trip was to Childrens Hospital in Boston

> (last year) and they can do it --- our insurance wont cover and the

> cost of surgery there is $40k+!!!

>

> any suggestions? I also want to know the outcome of surgery --- is it

> effective?? is it long lasting???? please, if someone can provide

> some feedback i would greatly appreciate any help!!! i need to move on

> this since my daughter will be going to kindergarten next september and

> i dont want to wait until then...thanks in advance!

> ~jen

> " scoppeyes "

>

>

>

>

>

>

>

[Guest guest]

Good morning. Thank you for all the supportive emails! My goodness,

I never expected such a response! I feel like a weight has been

lifted knowing that there are others out there going through the same

thing I am.

Is there anyone in the group from Connecticut (USA) that can provide

more specific feedback with regards to physicians?

I will post a picture of my little Jenna on the site. I sent an

email to Boston Childrens Hospital first thing this morning to have

them contact my new health insurance carrier to see if we can get

this covered 100%.

I know Jenna will have to undergo 2 surgeries to correct this

condition. The first is trans-nasal wiring (anyone heard of this?)

and then the lifting of the lids.

Keeping my fingers crossed that the insurance will cover both

procedures 100%. What ever happened to hospitals doing surgeries

like this and not expecting a payment from the individual?

Anyhow, THANK YOU for the supportive feedback - the emails were

great. I will keep in touch to let you now how I make out with the

insurance and the hospital, etc...Have a wonderful day!

~Jen

" scoppeyes "

>

> > hi. my 4yr old daughter has blepharophimosis. i

> > keep putting off on

> > surgery because i am scared to death to have to put

> > her through this.

> > i have taken her to several physicians for opinions

> > and keep getting

> > the same answer that she needs surgery. however, NO

> > ONE in CT performs

> > this type of surgery so next trip was to Childrens

> > Hospital in Boston

> > (last year) and they can do it --- our insurance

> > wont cover and the

> > cost of surgery there is $40k+!!!

> >

> > any suggestions? I also want to know the outcome of

> > surgery --- is it

> > effective?? is it long lasting???? please, if

> > someone can provide

> > some feedback i would greatly appreciate any help!!!

> > i need to move on

> > this since my daughter will be going to kindergarten

> > next september and

> > i dont want to wait until then...thanks in advance!

> > ~jen

> > " scoppeyes "

> >

> >

> >

> >

>

>

>

>

>

> __________________________________

> - PC Magazine Editors' Choice 2005

> http://mail.

>

[Guest guest]

Jen

Both of my boys have had this surgery several times and been covered 100% ..my daughter (5 months) had 2 surgeries already and I assume they will be covered also...The insurance co makes the surgeon prove they needed it and send pics and all but she always wins! If you need anything email me Sharon I live in NY scoppeyes <minsco72@...> wrote:

Good morning. Thank you for all the supportive emails! My goodness, I never expected such a response! I feel like a weight has been lifted knowing that there are others out there going through the same thing I am. Is there anyone in the group from Connecticut (USA) that can provide more specific feedback with regards to physicians? I will post a picture of my little Jenna on the site. I sent an email to Boston Childrens Hospital first thing this morning to have them contact my new health insurance carrier to see if we can get this covered 100%. I know Jenna will have to undergo 2 surgeries to correct this condition. The first is trans-nasal wiring (anyone heard of this?) and then the lifting of the lids. Keeping my fingers crossed that the insurance will cover both

procedures 100%. What ever happened to hospitals doing surgeries like this and not expecting a payment from the individual?Anyhow, THANK YOU for the supportive feedback - the emails were great. I will keep in touch to let you now how I make out with the insurance and the hospital, etc...Have a wonderful day! ~Jen"scoppeyes"> > > hi. my 4yr old daughter has blepharophimosis. i> > keep putting off on > > surgery because i am scared to death to have to put> > her through this. > > i have taken her to several physicians for opinions> > and keep getting > > the same answer that she needs surgery. however, NO> > ONE in CT performs > > this type of surgery so next trip was to Childrens> > Hospital in Boston > > (last year) and they can do it --- our

insurance> > wont cover and the > > cost of surgery there is $40k+!!! > > > > any suggestions? I also want to know the outcome of> > surgery --- is it > > effective?? is it long lasting???? please, if> > someone can provide > > some feedback i would greatly appreciate any help!!!> > i need to move on > > this since my daughter will be going to kindergarten> > next september and > > i dont want to wait until then...thanks in advance!> > ~jen> > "scoppeyes"> > > > > > > > > > > > > > __________________________________ > - PC Magazine Editors' Choice 2005 > http://mail.><a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

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