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Nenna 10-08-2009 03:45 AM

3 month old w/ PWS
My baby girl has a PWS on her neck and cheek. We have been to see a childrens derm and she suggested that we start the laser treatments now. I am feeling totally overwhelmed with all the information and decissions that we have to make. I am scared that it won't be covered by the insurance and that we won't have the finances to get the treatment. I am also feeling a little guilty about having it lasered. Is it really necessary? Do they usually get really dark and thick if untreated? Any suggestions would totally make my day. Thanks :)

missy 10-09-2009 03:28 AM

I just wanted to say welcome and that other parents will come in soon and give you their opinions.

BUT, my advice is to drop the guilt if you have to have it lasered. Go ahead and call the insurance company or have a frank conversation with the doctor's insurance coordinator. They can really help.


zuzuspetals 10-14-2009 08:27 PM

My daughter Josie is two and has had multiple laser treatments on her facial Port Wine Stain. I am a teacher, and my husband works at Home Depot, so we do not have a lot of money, but insurance has helped to pay for the treatments.
I second what Missy said: Get the insurance company and doctor's office insurance person on the phone. Ask specific questions about coverage. The doctor's office should be able to guide you in this.
My daughter has had her treatments under GA, starting at 3 months old. She still LOVES to go the doctor, and she is a sweet and happy girl. She seems completely unaffected by the treatments. I definitely think it was harder on me!

Please feel free to ask me any questions!

rhonda 10-14-2009 08:57 PM

My 12 year old son has a facial port wine and has had treatments since he was 11 mos. old. I totally concur with Missy that there is no need to feel any guilt whatsoever with treating her port wine with laser. All the research points to early treatment to minimize growth. This is a progressive condition and you should treat it as such. I too remember being overwhelmed with all the information. My advice to you is to stick to this website only for information, sometimes the internet provides more than we need and not necessarily in a good way. I have been at this a long time and I agree with Josie's Mom that it tends to be harder on us than it is on them, especially when they are little. Kids tend to feed off of our anxiety, so the more confident you are with what you're doing, the more they'll think nothing of it. Laser treatment just becomes a part of your life and that's what she'll know.

kgregory 03-22-2010 12:33 AM

I am 15, and have been getting laser treatments since I was young, and I strongly reccomend them. They have done wonders for my PWS, and it is almost completely gone now. When I was younger, it hurt while the treatment it going on, but with new advancement in the technology of the lasers, I can barely feel it sometimes.

Also, do not feel guilty AT ALL. I'm so incredibly grateful that my parents started me on laser, because the results have been wonderful. The 5 minutes of pain has definitely been worth the result. Best of luck.

woneal 06-04-2010 09:13 PM

My son Michael has a PWS on his rt cheek, ear, & neck. Our pedi told us to wait until he was a year old to see if it faded, it never did so we were sent to a dermatologist in Nashville. Unfortunately, the insurance comp denied his laser surg. we appealed it & was denied again. We are stuck..we can't really afford to pay for it out of pocket...but i am a teacher and i see first hand how kids are sometimes teased and want to get this taken care of before he starts school. My sons PWS has gotten darker (he is now 3yrs old) I do feel that it is necessary to have it lasered. I am hoping for you that your insurance comp will cover the expense...I am still trying to find some way to pay for my sons treatments! Best of Luck :)

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