Is this a PWS? - Vascular Birthmarks Foundation Forum
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  #1  
Old 04-14-2006, 11:58 PM
ljlaurajoy
 
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Default Is this a PWS?

Hi, all. I have registered here to get help diagnosing my daughter's birthmark, and I hope I've posted in the right spot. Please forgive me if I haven't.

She's had it since birth. It is red, raised, distinct border, turns a darker red when she's hot, angry or crying, and bleeds a lot if scratched. It's getting thicker recently and I am starting to worry. Here is a picture (excuse teh scwol, she didn't feel like modeling for me):


Thanks for your help, God bless!

Laura
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  #2  
Old 04-15-2006, 03:14 AM
QCBirthmark
 
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Default Re: Is this a PWS?

I believe it is yes. But it seems to be a lower level so to speak. Have you taken her to a dermotalogist (sp.?) to have it confirmed? Please do so as soon as you can because if you choose to have her treated the sooner you are able to start treatments the better it is for her. I have a 5 year old daughter w/a PWS bmark. She goes to the Shriner hospital in Boston and will have treatment number 8 next week. We love it there they baby her lol, and pay for everything from food to transportation around the city to hotel to the treatments it's a wonderful organization.

Please keep us updated and welcome to the forums.

Jeni
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  #3  
Old 04-15-2006, 06:37 PM
ljlaurajoy
 
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Default Re: Is this a PWS?

Thanks for your reply, Jeni. I am going to be calling two different doctors' offices on Monday to try to schedule consultations. I am hoping that treatment can be pretty straightforward. What does your daughter's treatment entail? And is your insurance paying for the treatment or are you having to pay out of pocket? Thanks!
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  #4  
Old 04-17-2006, 10:13 AM
alexasmommy
 
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Default Re: Is this a PWS?

Hi. I would definately see a Pediatric Derm to hopefully get a correct diagnosis. Normally, a pws especially in an infant is not raised. There are exceptions to every rule of course. The raising,thickening etc usually comes with age. Especially if left untreated. Please try to see a Pediatric Derm that specializes in Vascular Malformations. A correct diagnosis is so important. There are various types of Vascular Malformations with pws just being one.How old is she now? Has it appeared to "grow"?What a cutie......
Once you have a diagnosis, you will know what path you need to take.
Good luck and please keep us posted.
Elena
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  #5  
Old 04-17-2006, 01:15 PM
QCBirthmark
 
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Default Re: Is this a PWS?

Quote:
Originally Posted by ljlaurajoy
Thanks for your reply, Jeni. I am going to be calling two different doctors' offices on Monday to try to schedule consultations. I am hoping that treatment can be pretty straightforward. What does your daughter's treatment entail? And is your insurance paying for the treatment or are you having to pay out of pocket? Thanks!
Our insurance doesn't cover the cost of surgeries. When Gabby was 2 we decided that it was time (we were told by a previous doctor she couldn't have surgeries until she turned 2) so we contacted a surgeon who specializes in laser procedures here in our area. We called the insurance company and they informed us that they thought they wouldn't be able to cover it as they felt that it is cosmetic. The doctor applied for the surgeries to be approved which was denied, and proceded to apply another 6 times all which were denied. After the 7th time he went to the corporate offices that are here locally and spoke with the department head of claims in person and of course they denied it so he went to the CEO of the company, and he denied it also. We were devastated. We began to look on line for the insurance codes for it to be covered and came across a woman's story of how she was able to find the Shriner Hospitals. We applied to the Shriner Hospitals in September of '02, were accepted, and by October '02 we had our first surgical date for surgery. Our next thought was how were we going to come up with the cost of flights, hotels, transportation and all of that to be able to get to Boston. The care coordinator at Boston was/is phenomenal with us (we love her still and I will forever sing her praises), she was able to get us free airline tickets, free hotel in Boston, free meals, and transportation. We went to Boston and to be honest I loved it. Gabby loves it still.

Surgery for her is pretty much uneventful. We arrive at the hospital at 6:30am she gets her "check-up", then they take pictures of her B-mark to see how the progress is going. She always gets to play with the kids before surgery and she says the worst thing is not being able to eat. They then call our name, and take her and I up to the pre-op room, where they give her a cocktail of sorts to help relax her. Then by the time they are ready to take her to the op room she is out of it. While that seems a little weird, she is so cute lol. Once in the op room I lay her on the table and cute little thing lays down gets covered w/her baby blanket, has her certain dolly's that she chooses to go in w/her and the mask is placed on her face and off to sleep world she goes. When she wakes up she is cheery and wants (in this order lol) something to drink, the wires off of her, something to eat, and after about 15 min, needs to go potty. All the while she is making the nurses laugh lol.

All in all we have a great time. There are times when it's rough being so far from home but we don't have to have anything come out of our pocket. We now have a new Shriner temple that covers us, and they just don't expect anything from us at all they just want to care for these children.

If this site on your daughter is truly a PWS, and your insurance won't cover don't give up, there is always the Shriner Hospitals. The burn hospitals are in Boston, Galveston, and I believe there is one in CA, but don't quote me on CA.

Please keep us updated! Hope this helped you out sugar.

Jeni
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  #6  
Old 04-22-2006, 04:44 PM
mastonmaltese17
 
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Default Re: Is this a PWS?

Hey
My name is Melissa and I have a PWS covering my entire right arm, back and chest. I believe that this could be a stork bite, also known as a stork mark. They appear in younger children in the same area that your daughter has it. PWS aren't usually raised from the surface and are usually a deeper color. Stork marks should go away between the ages of five and eight and pose no threat to the child. You should definitely take her to a plastic surgeon or a dermatologist to receive a correct diagnosis but I believe she could have a stork bite. Please contact me if you need any help or information!
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