newborn diagnosed w/ pws

hi all-
my 2 wk old son was diagnosed w/ pws. it is mostly in his hair but also extends on his neck, ear and shoulder. any suggestions as to where to get information about this condition? some of the stuff i've read says the pws even tends to grow. the pedi said they'd refer me to a derm when my son is 3 mos. My other son had some corrective plastic surgery and so we have a wonderful pediatric plastic surgeon we already are familiar with. i'm not even sure this is something that can be corrected, esp at such a young age. as a parent, i don't even notice the birthmark, but i know it might be more difficult as he gets older and goes to school. just wanted feedback.

[KristieinStMarysGA]

Hi just want to say welcome to the board!! I don't have any experience with PWS as I have a VM but I want you to know you came to the right place. You will get advice and support.

Good Luck in finding the right treatment for your baby boy!

Kristie

Hi !! I would reccommend that you see a Vascular Abnormalities specialist. If you chose laser, it can be done early. Some Docs will not treat super early but many do. We began laser when my daughter was six weeks old.
If you give me an idea of what state you are in, I can possible give you the names of some Vas cular Specialists in your area. I would try to see one as soon as possible. You do not need to start laser now if you do not want to, but the earlier you see a specialist the better.
PWS tends to grow with the child. Example, if your cheek has pws, it will "Grow" as the child grows. Meaning not "spreading" but the area may measure larger as the child grows.
If you have any specific questions, ask away !!!!!!
Congrats on the birth of your little one...
ELena

I am new to this but can say that this site is a good place to post questions and also Birthmarks.com has a lot of good information about PWS and treatment. My son has a low grade PWS on his forehead and in his hairline, he is ten weeks old we knew nothing about PWS before his birth. I agree with Elena about seeing a specialist as soon as possible, it took us five weeks before we were able to get an appointment and had to travel 6 hrs to get there, but she helped answer a lot of questions and gave us options. I would talk with your pediatrician about getting a referal sooner than three months or find another that has experience with PWS, our ped. did not want us to see anyone else until our son was six months old so we made some phone calls and found one with experience and he referred us to a specialist right away. Good luck

[juliemn]

Welcome!* I see you've already gotten good advice.* I saw your post earlier this week, but wasn't able to get back here until now.* There are several good and correct articles about PWS around, and unfortunately some that are misleading.* Although the ones that I've found misleading are usually very old.

As Elena mentioned, PWS doesn't grow faster than the individual but will "grow" with them.* So parents that choose laser treatment early are in effect having a smaller area treated.* But very early intervention is not always available to every infant.* It really depends on how extensive the birthmark is.* If it covers a significant area, laser treatments are very often done under general anesthesia for young children and infants.* Most doctors will wait until they've grown a bit before subjecting them to anesthesia.* In addition, even infants that have smaller areas to treat..but still significant enough to need some type of topical anesthesia/pain relief will sometimes be treated a bit later.* The topical anesthesia can also be an issue in very young infants.* *I think 6 months is common for infants that will need these types of anesthesia/pain relief.* Infants with very small areas to treat may start sooner, as they may not need anesthesia at all.

Laser treatment with pulsed dye laser is the current treatment of choice for PWS.* It is also a personal decision.* You will find most people here advocate early intervention with laser, myself included.* Although PWS does not grow, it can thicken, get darker, cause hypertrophy (overgrowth of tissue), and eventually a condition called blebs may develop on the affected area.* The majority of people don't have the worst of these side effects until adulthood, if at all.* But there are some children with a PWS that seem to develop quickly into these manisfestations.* And actually, some of this may depend on what grade PWS your son has.*

Unfortunately laser does not completely correct or cure the birthmark.* There is no cure for PWS at this point. It does provide a tool to lessen the side effects of it, and in many cases will lighten it significantly.* Very few people get 100% lightening out of laser treatment.* The general treatment protocol is to have treatments at a regular interval (6-12 weeks is common) until you feel they are not effective any longer.* After that it becomes more of a maintenance schedule.* Once the color of the birthmark seems to be coming back, start all over again.* Some people need to go back after a year, some have been able to wait several years.* The PWS will come back eventually, as the nerves involved will continue to give the capillaries the "order" to keep filling up with an excess of blood.* That part does not go away.

If you have a plastic surgeon that you already have a good relationship with, I'd start there.* If he/she does not treat vascular birthmarks, they may at least be able to direct you to one that does.* And as already suggested, look up the names on this website and at birthmarks.com.* They both have find a doctor pages.

I've included some links for you...HTH's.* Keep asking questions...information is ammunition with vascular birthmarks.* And I could suggest that if you are doing a search for port wine stains to also try a search for capillary malformation.

Julie
(mom to Ben)
Ben's Home Page
jshiggins@earthlink.net

Ben's Laser treatment page
Recent Developments in Lasers and the Treatment of Birthmarks:* Article by M. Waner
eMedicine - Vascular, Capillary Malformations
Science, Math and Medicine - Working together To Understand the Diagnosis, Classification and Treatment of Port-Wine StainsThis one's right here at the VBF web site
And of course
Birthmarks.com

edited for bad link..jh