PWS, need second opinion? - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  

1994 - 2014 Celebrating 20 years with 75,000 networked into treatment, over 3,000,000 views monthly on our world wide websites, virtual chapters on 6 of the 7 continents in the world, 500 families provided free lodging while seeking a medical opinion or treatment,over 400 conference scholarships awarded, 200 Day of Awareness events, 15 conferences, 12 programs (including our Ask/Accept Anti Bullying Program),10 walk/runs, 6 research projects funded, 4 physician education grants awarded, 4 college scholarships awarded, 3 Galas, and 2 International Missions Trips with over 300 treated by our international team.
Donate to VBF

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 01-01-2010, 01:30 AM
Merereb Merereb is offline
Junior Member
 
Join Date: Jan 2010
Posts: 3
Default PWS, need second opinion?

My one year old daughter has PWSs on her lower back, back of right calf, dappled on her ankle and foot, botton cheek and pubic area. We've seen the pedi derm at Duke, who said it was fine, don't have to do laser, it's our choice. Should we get a second opnion? She's had a MRI, it was normal. Anyhow, because of the sensitive area of the PWS and the possibility of the cobbling, bleeding, etc, I'm having a hard time deciding whether or not to have the laser done. I don't care how it looks, and hope she won't either, I just want her to never feel any pain, emotional or physical. I know no one else can make this decision, but I can use some advice/guidance. Is the laser therapy insurance against the cobbling?
Thanks for any insight.
Happy New Year!
Reply With Quote
  #2  
Old 01-01-2010, 02:30 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,714
Default

I don't *think* laser therapy is insurance against cobbling. I have seen people who, despite getting laser therapy, still struggle with blebs and cobbles. Her PWS sounds extensive.

However, I don't know that laser is needed right now in her case. Perhaps allow her to make the decision when she is older.

You're right in that no one else can make that decision. Other people will be along soon..... I just wanted to say welcome!

Missy
Reply With Quote
  #3  
Old 01-02-2010, 05:41 AM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default

Hello, I would highly recommend you get an opinion from Dr. Stuart Nelson. You can email him directly from this website on the front page. There are benefits to treating pws early on. Dr. N, can go into more detail.
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #4  
Old 01-14-2010, 03:38 PM
alfritz alfritz is offline
Junior Member
 
Join Date: Sep 2009
Posts: 2
Default Response for Merereb

Hello - I can most certainly relate to your questions and concerns about your one year old daughter and her PWS. My daughter is 11 months old and has PWS covering approximately 80% of her legs, all of her bottom and part of her feet. Our specialist also told us it was up to us if we wanted to do treatment to remove her PWS. My family has struggled with this as well. I don't want the PWS to cobble or bleed and be of any physical or emotional pain to her. Because her PWS is extensive they would have to put her under general anesthesia, which I am also very uneasy about. They would have to do this for up to six treatments.

Has anyone else experienced this or had to go through a decision like this? I think Merereb and I could really use some advice or support. I haven't connected with anyone who has actually gone through the process with their little one. I also heard the longer you wait the harder PWS is to remove or lighten?? So I cannot decide if we should move forward with treatment or hold off for awhile. My daughter's PWS changes color so often as well...........is this characteristic of PWS?
Reply With Quote
  #5  
Old 01-14-2010, 11:33 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,714
Default

Other parents will come by soon and share their experiences. As hard as it is, I usually hear parents who say they were glad to begin treatment early, when they felt like their child might not remember so well. I don't know, though... it's hard to give an opinion.

PWS often change colors!! They will be bluish when it's cold and bright red when the child cries!! LOL Yes, that is characteristic! No worries there.

Welcome!!

Missy
Reply With Quote
  #6  
Old 01-22-2010, 02:49 PM
samsherman samsherman is offline
Junior Member
 
Join Date: Jan 2010
Posts: 8
Default

Hello,
I am very interested in these responses and so glad to see others on this site. Our almost 10 month old daughter has a PWS starting on her back and going down her right leg in a blotchy form. We are awaiting an MRI but would love to connect with others to share experiences. Thanks so much!
Samantha
Reply With Quote
  #7  
Old 01-26-2010, 09:54 PM
ynnquintero ynnquintero is offline
Junior Member
 
Join Date: Jan 2010
Posts: 2
Default

Hi my 15 months baby girl borne with a PWS in her left side of the face.. we have seen several doctors and all the time they told my husband and I that itwas a Hemangioma going to fade away with the years.... because I haven't see any change in the birth mark I took my baby to Cedars Cenai at Beverly Hills, CA to see doctor John Reinisch and he told us that it was not called hemangioma that it was called Port Wine Stain and could be removed by laser treatment.. and because he is far away of where we live he recommended us to UCSF with doctor Ilona Fried and my baby is soon in march to have her first laser therapy it was a very hard and emotional decision to choose but because it is so depressed and emotional for me to see my baby with that mark and have to answer all the time questions about it and people stating at my little angel I have decided it is the right time to treated so I hope everything goes well...

any advice or information about will be really appreciated thank you soo much

Yoana Quintero
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump