http://174.120.2.174/board Help for those struggling with Port Wine Stain treatment or management. en Thu, 09 Sep 2010 10:06:27 GMT vBulletin 60 http://birthmark.org/board/images/misc/rss.jpg http://174.120.2.174/board http://174.120.2.174/board/showthread.php?t=4071&goto=newpost Mon, 06 Sep 2010 07:20:27 GMT hello, i investigated on my own and i found also the article on this page that early start of the treatmrnt of PWS gives better results. But now i... hello,

i investigated on my own and i found also the article on this page that early start of the treatmrnt of PWS gives better results. But now i am searching for treatment for him, and our doctor said he woul begin at 2 years. I realised that doctors are not united in giving the start of the treatment of the baby. But we all know that this can be one of the determinive factors for better final fading....is there any prove on the basis of which i would be able to get a second opinion from our insurance which will blindlessly and no concidering other point of view follow first doctor opinion to start at 2 years....?????????

i would be most happy for any clue or suggestion...: ]]> Port Wine Stain Help and Resources teardrop2 http://174.120.2.174/board/showthread.php?t=4071 http://174.120.2.174/board/showthread.php?t=4065&goto=newpost Thu, 02 Sep 2010 15:48:15 GMT I wanted to start this thread because after researching this site, it seems that in most cases people get on here and post about their child having a... I wanted to start this thread because after researching this site, it seems that in most cases people get on here and post about their child having a PWS or other vascular birthmark and then never post again. So, there isn't a lot of posts where people received good results. Well, we did and so I wanted to share.

My son was born with patchy PWS stretching from his lower left back to his left toes. At the age of 1 month, he had a doppler ultrasound which showed the PWS was superficial (not deep). Then at 6 months of age, he had a MRI with contrast done on his spine and left leg. They came back fine showing what the ultrasound did. PWS only affects tiniest blood vessels just under skin. No deep problems. No KTS. No growth issues. He is now 8 months old, crawled at 6 1/2 months and is VERY close to walking (pulls up, walks around furniture, walks with toys, stands on own).

We had always been taking him to Dayton Childrens. He would see the Pediatric Dermatologist. Although, he was very good. He did not specialize in PWS. He referred us to Cincinnati Childrens (which is rated in the top 3hospitals in the country for vascular birthmarks and they see children from all over the USA) for laser consultation. The Derm. at Dayton would never give us a clear answer if we would ever have to worry about KTS. He would always say "We'll keep an eye on him".

We went Friday to Cincinnati Childrens. It was soothing to see so many children with PWS there with their parents. I don't wish it on any child or parent. But, its nice to have others to talk to and relate to. Anyway, they confirmed that Talan's PWS were minor and said there is absolutely a ZERO percent chance he will ever be diagnosed with KTS or have any medical problems associated with his PWS. He is not a child that needs to be monitored as he grows.

They said laser treatments would likely result in 50% lightening and would need maintenance treatments probably once per year. They will not start treatments until Talan is one year old. In their opinion, Talan's will not be very noticeable as he grows even with no treatments.

If we decide not to proceed with laser, he does not have to go back to a Specialist for his PWS.

So, please do not panic if your child has a PWS. Not all cases are KTS or other syndromes just because a PWS is present. Find a Pediatric Dermatologist that specializes in vascular birthmarks. Oh and most important, enjoy your little one. They are such a blessing. ]]> Port Wine Stain Help and Resources Talans Mommy http://174.120.2.174/board/showthread.php?t=4065 http://174.120.2.174/board/showthread.php?t=4058&goto=newpost Fri, 27 Aug 2010 02:10:05 GMT Another question- my insurance asked me to get the medical codes in order to check if they'd cover the procedure on my pws.

The doc I'd be going to gave me a code for laser treatment, and a code that I believe relates to hemangiomas. I thought pws were different than hemangiomas, does anyone know what the correct coding for a pws is?
Is it lumped under hemangiomas or should I get a different code?

Thanks! ]]> Port Wine Stain Help and Resources LizH http://174.120.2.174/board/showthread.php?t=4058 http://174.120.2.174/board/showthread.php?t=4057&goto=newpost Fri, 27 Aug 2010 00:30:58 GMT Hello again to everyone!

I'm 24, have had many laser treatments on my pws that spreads from my right hand up my arm and to my back.
While the most recent treatments I had in late 2009/early 2010 with a Perfecta were very effective in reducing the size of my pws, over the past few months I've had a few bumps that began to bleed form and I want to begin treatments again.

I just relocated to Virginia and now have insurance through Anthem BCBS of Virginia. Does anyone have experience in Virginia, or with Anthem, getting laser treatments covered?

Thanks in advance for any info!! ]]> Port Wine Stain Help and Resources LizH http://174.120.2.174/board/showthread.php?t=4057 http://174.120.2.174/board/showthread.php?t=4056&goto=newpost Thu, 26 Aug 2010 18:47:58 GMT Can anyone advise me or send the links of before-after photos of babies with PWS? I do not find many, just some...thank you in advance! Can anyone advise me or send the links of before-after photos of babies with PWS? I do not find many, just some...thank you in advance! ]]> Port Wine Stain Help and Resources teardrop2 http://174.120.2.174/board/showthread.php?t=4056 http://174.120.2.174/board/showthread.php?t=4055&goto=newpost Thu, 26 Aug 2010 13:20:41 GMT Hello, i somehow recovered from the first shock, of realising my newborn son, having PWS. He has it 1/4 of the face in the area of cheek, upper lip,... Hello,
i somehow recovered from the first shock, of realising my newborn son, having PWS. He has it 1/4 of the face in the area of cheek, upper lip, ending under the eye and going a bit into the eyebrow, and then from the profile going until the ear...we have been tested the first week for SWS and glaucoma. It is clear for now.

I have started to look around asking questions, searching for centers...but i realised that going out of my country (Slovenia) would be difficult, cause treating PWS is a long way..laser repeated many times.......our doctor at Plastic cirurgy said he would start treating at the age of 2. But according to all i read i am sure that early treatment is coorelated to the most success possible....so i dont know now what to do. Does anyone have the idea, would it be possible to go for example somwhere else in Europe or even to USA for SOME treatments (let's say 4-6 treatments - or all the treatments till age 2) and then continue in HOME country? What are your experiences? Thanks in advance! ]]> Port Wine Stain Help and Resources teardrop2 http://174.120.2.174/board/showthread.php?t=4055 http://174.120.2.174/board/showthread.php?t=4054&goto=newpost Wed, 25 Aug 2010 06:15:43 GMT I am a 19 year old girl...i have a large blotchy PWS on my left leg (ankle to the bottom of my knee) I have NEVER dated a guy because i am sooooo... I am a 19 year old girl...i have a large blotchy PWS on my left leg (ankle to the bottom of my knee)
I have NEVER dated a guy because i am sooooo afraid that he will find me unattractive after he finds out about my leg...or even worse embarressed of me.
It makes me really sad...i have tried laser treatments for about two years once a month...didnt work at all...

so i feel like i will always be alone....
Any of you have advice or similar experiances? ]]> Port Wine Stain Help and Resources muse151 http://174.120.2.174/board/showthread.php?t=4054 http://174.120.2.174/board/showthread.php?t=4049&goto=newpost Tue, 17 Aug 2010 03:28:13 GMT Hello everyone,

This will be my first time posting so I am kind of new. I've also been reading alot on these forums as well just to see what's new. Anyways I was wondering what is the usual price range on getting a laser treatment for a PWS on your face? lets say $150-250 per treatment?

If anyone ever got a laser treatment done please tell me how much did they charge you per treatment for anyone without insurance.

-Thanks ]]> Port Wine Stain Help and Resources RT215 http://174.120.2.174/board/showthread.php?t=4049 http://174.120.2.174/board/showthread.php?t=4043&goto=newpost Sat, 14 Aug 2010 05:21:31 GMT 16 year old daughter just started this treatment,she has had several laser surgeries over the years that lightened her portwine stain quite a bit,but... 16 year old daughter just started this treatment,she has had
several laser surgeries over the years that lightened her
portwine stain quite a bit,but when she went through puberty
it got darker. Has anyone done the imiquimod and laser?
And good results? ]]> Port Wine Stain Help and Resources shelliemarie_C http://174.120.2.174/board/showthread.php?t=4043 http://174.120.2.174/board/showthread.php?t=4014&goto=newpost Wed, 11 Aug 2010 21:52:13 GMT Hello everyone, I have a PWS on a large body area - the left hand, the left part of my chest and my back and a part of the neck. I am offered to... Hello everyone,
I have a PWS on a large body area - the left hand, the left part of my chest and my back and a part of the neck. I am offered to treat the PWS in a clinic.The laser technology will be neodymium - YAG laser. Could you share your experience with YAG lasers if you have any? Thank you in advance. ]]> Port Wine Stain Help and Resources Nista http://174.120.2.174/board/showthread.php?t=4014 http://174.120.2.174/board/showthread.php?t=3979&goto=newpost Fri, 06 Aug 2010 12:10:05 GMT Good morning everyone!! has anyone had an issue with behavior and or learning troubles that has pws?? my daughter is really struggling in school with... Good morning everyone!! has anyone had an issue with behavior and or learning troubles that has pws?? my daughter is really struggling in school with math and just cant seem to grasp it. i have tried many, many diffrent things with her, i even went to her school and asked for them to do testing on her to see if she has a learning disablity but they didnt want to do anything yet because shes only in 2nd grade?!?!?!? i di see her struggling and it frustates me also.. any suggestions?? ]]> Port Wine Stain Help and Resources isavannyson09 http://174.120.2.174/board/showthread.php?t=3979 http://174.120.2.174/board/showthread.php?t=3972&goto=newpost Fri, 30 Jul 2010 17:27:01 GMT my name is holly, and my 8 year old daughter has a pws on more than 1/2 of her face, some on her neck, in her mouth/throat and covering her right... my name is holly, and my 8 year old daughter has a pws on more than 1/2 of her face, some on her neck, in her mouth/throat and covering her right ear. we have been going thru laser treatments since she was 2 1/2 years old, she had a total of 13 now, i can say we do see some lighting of it but not that much to say "wow it really works". i am getting so down on the laser treatments now, she knows what it is and cries and breaks my heart every time. i know it is something that needs to be done for her but i am so drained i sometimes find myself not answering the calls from her dermatoligist just so i dont have to hear them words.. is anyone else going thru the samething? i try my hardest to be strong for myself and her but it has been so many years and i just wish more could be done.. my new pedetrician mentioned something to me today about a new type of treatment and i was wondering if anyone has heard of it, the meds name is propanolol. i was looking for ao good site when i ran across this one.. i hope everyone is doing well and i look foward to getting to know some of you.. god bless you all and all of our angels!!!! ]]> Port Wine Stain Help and Resources isavannyson09 http://174.120.2.174/board/showthread.php?t=3972