How long should he have laser treatments? - Vascular Birthmarks Foundation Forum
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  #1  
Old 02-12-2007, 10:02 PM
can
 
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Default How long should he have laser treatments?

Hi, I'm so happy to find this place.

My baby Eun was born with PWS on his right-sided eye, cheek, forehead, head, and temple. He is 2 and half years old now, and so far he's had 7 laser treatments. The treatments work very well, and improved a lot. Depends on the temperature, his PWS gets darker, but overall, it's been getting better.

I was told by my doctor that he was gonna have about 10 treatments when we began 2 years ago.

But, I just read that laser treatment should be maintained for life... Is it true?

Thank you so much for your help in advance...
Again, it's good to find this place...

Best,
Can
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  #2  
Old 02-12-2007, 10:56 PM
missy missy is offline
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It depends. Depends on the size, the color, etc. I know adults who do go for laser treatment once per year or so for maintenance, but I also know some who haven't had a laser in years.

I know you wanted a definite answer (I never get to give those!), but there really isn't one. There are so many factors involved that's it's impossible to give a yay or a nay.

Good news on improvement, though. Has Eun been tested for eye problems (glaucoma, most of all) since his pws involves the eye?

Missy
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  #3  
Old 02-13-2007, 11:57 AM
can
 
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Default Thank you!

Dear Missy:

Thank you so much for your reply. It's so good to feel that we're not alone.

Yes, he's been checked for the possible glaucoma every 6 months, and so far so good. I was told by the doctor that if no sign of glaucoma until he becomes 5 years old, it would be a positive sign.

Medical insurance is a big problem. We recently change to Aetna, and they denied laser treatment... Is there any advice for that?

Thank you very much,
Can
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  #4  
Old 02-13-2007, 03:48 PM
missy missy is offline
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We have an example appeal letter here:
http://www.birthmark.org/appeal.php

The MSN group has a lot of them. I think you have to join the group before you can see them:
http://groups.msn.com/vascularbirthmarksupport/insurancelettersappealswon.msnw?fc_p=%2FInsurance% 20Letters%20%28appeals%20won%29

What is their reason for denial? Pre-existing condition?

Missy
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  #5  
Old 02-13-2007, 08:10 PM
can
 
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Dear Missy,
Thank you so much again.
Their reason was that it's "cosmetic" surgery...
Thanks for your info, and I'll join the discussion group.
Have a good day,
Can
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  #6  
Old 02-15-2007, 09:59 PM
Jimmy2007
 
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Quote:
Originally Posted by can View Post
Dear Missy,
Thank you so much again.
Their reason was that it's "cosmetic" surgery...
Thanks for your info, and I'll join the discussion group.
Have a good day,
Can
In the UK they did not want to do the treatment because of the same reason but I got them to do it as it was damaging to the child psychologically.

I hate to say this but 'cosmetic' seems like a poor choice with all of the qualitative research I have seen recently....

Anyway, keep posting so I can follow along.... Who do you use now for insurance in the states?
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  #7  
Old 02-16-2007, 04:50 PM
heyjude heyjude is offline
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we too just switched to aetna from united health care. my doctors billing person called them to get pre approval and it was just covered, period. i thought it was weird because we had to have our doctor write a letter to the insurance and get it approved but this time the treatments were just covered. i wonder if it was a mistake or if our plan is just really good. what plan do you have?
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