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Old 02-24-2006, 05:57 PM
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Default What to do?

Hello, this is my first time posting, but I have been reading posts for a little bit now....

My 6 month old daughter has been diagnosed with port wine stain. It covers most of her left arm and continues up to cover a little of her chest and back. It is very light pink now, and we have not noticed any darkening since birth.

We have seen the 2 pediatric dermatologists in town, and have conflicting opinions. One doctor was trained by the other, so that's kind of strange that they differ in opinion so greatly.

The first doctor wants to treat it with laser to prevent further darkening or cobbeling of the skin. They just called wanting to set up the first surgery, but she will be moving out of state this summer, and I hate to have her treat it once, without knowing who her replacement is going to be, or if she even has one. She wants to do about 8 treatments, 1 every 3 months.

On advice by our pediatrician, we got a second opinion from the other pediatric doctor who actually trained the first one we saw. She did not want to treat it with laser at this time. She thought we should just keep an eye on it.

Like I said, it is very light pink right now, and they don't notice any growth difference between the arms.

I am so confused on what to do at this point. Which opinion do you go with? Let me know what everyone thinks about this.

Thanks so much for your help -

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Old 02-24-2006, 06:35 PM
rhouwman rhouwman is offline
SD Parent Resource
Join Date: Jun 2004
Posts: 8
Default Re: What to do?

Hi Kelley, I don't have any PWS specific advise for you, but was wondering where you will be moving to?* It might be a good idea to seek a physician in the area you are moving to so that you would have the ball rolling (whatever that might be) when you get there.* Just a thought.
I also wanted to let you know about the MSN SUpport group, www.groups.msn.com/vascularbirthmarksupport.* There are several PWS parents there who have already been down the laser road and would have some great advice for you.* Several of them also post here, but you might get a quicker reply.*
You might also want to ask your question to one of the doctors on the left hand of your screen here under Ask a Doctor.* They are a great resource!
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Old 02-24-2006, 09:21 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: What to do?


I am 23 with facial PWS.

I agree with Robin I think you should be planning ahead for what state you are moving to. If you look under the resources at the top of the page you can find a physican in that area.

My personal opinion is to go with the first opinion you got. Earlier you can start treatment the better. No child deserves to go thru what I did growing up. If you can get it removed before it effects your daughters life. Also, that doctor is correct laser treatment can pervent the PWS from forming coblestones or bleps. The growth of the PWS is normally caused by hormones. Mine did not start growing until I was around 20 years old.

My PWS is a level three. From the way you discribed your daughters PWS she has either the level of one or two. (three is far dark purple and deep)

Also, I would suggest doing some research in KT syndrome. Your daughter might have some form of that since the PWS is on her arm. KT syndrome is related to Sturge Weber Syndrome (which I have) but a doctor would have to diagnose her.

You can also ask the KT and PWS expert on the front of this website. Make sure to send pictures and detailed info on the PWS.

I hope this has helped and if you have any other questions please ask we are here for you.

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Old 02-27-2006, 03:27 AM
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Default Re: What to do?

Thank you for your advice.

I'm sorry if I was confusing, but we are not moving - the first doctor that recommended the laser is. She is moving in June. That would mean we would get one treatment in for our daughter and then the doctor would move. And, they have no replacement for her yet.

I am going to research the KT syndrome, but neither doctor we have seen has mentioned anything about that.

There are 2 more doctors listed on this site that we have not seen yet, so I will try to get an appointment with them for one more opinion.

I would just hate to ignore this and it turn in to a problem later. I guess I would feel better knowing that I tried everything I could.

Also, does anyone know if there are other tests that should be performed when they have been diagnosed with PWS? Both doctors visits have been really quick - just a quick look at the birthmark. I was just curious if this was normal or not.

thanks again for any help -

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Old 03-01-2006, 03:54 AM
juliemn juliemn is offline
Senior Member
Join Date: Sep 2004
Posts: 95
Default Re: What to do?

At this age it's probably fairly common to just diagnose the birthmark. Limb discrepancy should be watched for though.

Some doctors do proceed with caution when limbs are involved, as KT may be an issue. Sometimes laser for patients with KT is not advised...but I believe that it's due to a certain condition that may or may not present with KT patients. I'm sorry, I'm not really up on KT syndrome.

Otherwise, I too am an advocate of early laser treatment. But each case is different....and finding the doctor that you trust is probably the first step. Making the decision together is always easier I think.

I agree with Robin about trying to network with parents in your area. It REALLY makes the doctor decision so much easier sometimes. Especially when you're dealing with a less common birthmark.

Julie H
Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
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