My daughters PWS - Vascular Birthmarks Foundation Forum

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources
Reload this Page My daughters PWS

Reply
 
Thread Tools Display Modes
  #1  
Old 06-05-2008, 03:59 PM
Jonathan Newton Jonathan Newton is offline
Junior Member
  
Join Date: Jun 2008
Location: London UK
Posts: 12
Default My daughters PWS
Hi - just thought I would post a photo of my daughter PWS - any feedback or comments welcome. Would ideally like to post before and after but dont have first treatment untill december!!!.
Reply With Quote
  #2  
Old 06-05-2008, 04:03 PM
Jonathan Newton Jonathan Newton is offline
Junior Member
  
Join Date: Jun 2008
Location: London UK
Posts: 12
Default
pics attached..................................
Attached Images
File Type: jpg DSC01105.JPG (17.1 KB, 162 views)
File Type: jpg DSC01106.JPG (19.0 KB, 95 views)
Reply With Quote
  #3  
Old 06-05-2008, 04:35 PM
nickbar nickbar is offline
Senior Member
  
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,075
Default
DId you say she had MRi with contrast to rule out Sturge Weber Syndrome?

If you need more information, please let me know and I can direct you to the SWS Community.

Laser will probably be very beneficial for your daughter. I know December seems like a long time to wait...but it will be here before you know it. Enjoy your baby as they grow up so quickly. I know the UNKNOWN is often the hardest part. Hang in there.

Corinne
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #4  
Old 06-05-2008, 05:13 PM
Jonathan Newton Jonathan Newton is offline
Junior Member
  
Join Date: Jun 2008
Location: London UK
Posts: 12
Default
Thanks foe the nice reply Corinne , we have an MRI booked for next month - her eyes have been tested and the results came back all clear.
You are right - it is the unknown waiting to see how effective lasers are that is an agonizing wait!!!.
Reply With Quote
  #5  
Old 06-23-2008, 12:52 AM
Superchikk Superchikk is offline
Junior Member
  
Join Date: Nov 2007
Location: Georgia
Posts: 19
Default
We also had to wait what seemed like forever for our first treatment. Our son was 8 months old for his first. It will come quicker than you think!

And our Doctor promised us the whole thing would be harder on me and my Husband than it was on my son...she was right.
Reply With Quote
  #6  
Old 03-22-2010, 12:16 AM
kgregory kgregory is offline
Junior Member
  
Join Date: Mar 2010
Posts: 18
Default
I just thought it might be reassuring to let you know that I was born with a PWS, and at age 15, it is almost completely gone because of treatments
Reply With Quote
Reply

« Previous Thread | Next Thread »

Thread Tools
Display Modes
Linear Mode Linear Mode

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

Similar Threads
Thread Thread Starter Forum Replies Last Post
My daughters leg my4kids0044 AVM Help and Resources 6 06-04-2010 01:55 AM
Update On Daughters Heamangioma claire & eloise Help and Resources for Hemangiomas 14 04-09-2010 08:39 PM
Update On Daughters Heamangioma claire & eloise Help and Resources for Hemangiomas 6 05-16-2008 11:14 PM
Wanted to share my daughters progression photos groovysmurf Help and Resources for Hemangiomas 4 05-07-2008 08:08 PM
Daughters Port Wine Stain maisiesmum Living with a birthmark - my story 2 01-23-2007 12:18 PM