Please Help My Daughter - 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 > Hemangioma Help > Twins With Birthmarks

Reply
 
Thread Tools Display Modes
  #1  
Old 12-25-2009, 12:08 PM
confused confused is offline
Junior Member
 
Join Date: Dec 2009
Posts: 3
Default Please Help My Daughter

Hi My Daughter Was Born With Klipple-trenaunay Syndrome To Cut Along Story Short She Is Now 14 Yr Old Who Has A Overgrowth Of Her Left Lower Limb Due To An Extensive Vascular And Lymphatic Malformation Extending From Her Left Buttock.areas Within The Malformation Are Chronically Infected ,including Over Her Left Mid Tibia ,for Which She Is Currently On Intravenous Antibiotics Via A Portacath.the Doctors Have Suggested A Trans-tibial Amputation Of Her Left Leg Just Above The Infected Area.
She Has A Fixed Equinus Deformity Of Her Left Ankle And Walks With Out Heel Strike.the Doctors Are Uncertain Whether Adequate Stump Length And Good Skin And Soft Tissue Coverage Is Possible Given Her Extensive Malformation.my Main Concern Is The Risk Of Bleeding And Non-healing After The Amputation
I Was Justing Wondering If She Does Not Have The Amputation What Other Options Is There For Her
Thank You For Taking The Time To Read This
Reply With Quote
  #2  
Old 12-25-2009, 03:24 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,714
Default

Hi,

Where are you located? You need to find out if there are other options from a physician. If you haven't already, use our Ask the Expert service:

http://birthmark.org/experts.php

Best of luck!

Missy
Reply With Quote
  #3  
Old 12-27-2009, 12:01 PM
confused confused is offline
Junior Member
 
Join Date: Dec 2009
Posts: 3
Default

Thank You For That Info Missy
Reply With Quote
  #4  
Old 12-27-2009, 12:01 PM
confused confused is offline
Junior Member
 
Join Date: Dec 2009
Posts: 3
Default

Thank You For That Info Missy We Are In Australia
Reply With Quote
  #5  
Old 12-27-2009, 02:35 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,714
Default

Most of the people I know of in your area have been happy with Dr. Lord. Have you had a chance to see him? Also, if traveling is at all a possibility, you might get in touch with Dr. Tan in NZ... he's supposed to be great as well!

I'll copy the info we have:

Dr David Lord
Radiology Department
Vascular Birthmarks Program
Childrens Hospital Westmead
Locked Bag 4001
Westmead NSW 2145
Sydney Australia
www.chw.edu.au/site/directory/entries/vascular_birthmarks.htm


Dr. Tony Moore
Adelaido Plastic Surg. Assoc.
Memorial Hospital North Adelaide,
S. Australia 8267-1800

Dr Philip Bekhor
Director, Laser Unit
Royal Children's Hospital
Melbourne, Australia
and
Laser Dermatology
503 Elgar Rd
Box Hill, Melbourne
Victoria
Phone 61 3 9890 1844
www.laserdermatology.com.au
New Zealand
Dr Swee T Tan MBBS FRACS PhD
Director,
Centre for the Study & Treatment of Vascular Birthmarks,
Wellington Regional Plastic, Maxillofacial & Burns Unit,Hutt Hospital
High St, Private Bag 31-907, Lower Hutt,
Wellington, New Zealand.
+64 4 5709067
Fax +64 4 5709510
sweetan@plastsurg.co.nz
Reply With Quote
  #6  
Old 12-27-2009, 11:52 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default

Please email Dr. Rosen and Dr. Delfinian on the ask the expert page. THey are the most qualified to give you options for your daughter. If you need any help, please don't hesitate to contact me directly
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #7  
Old 12-30-2009, 08:54 PM
TripleTime TripleTime is offline
Junior Member
 
Join Date: Sep 2009
Posts: 10
Default

We are also in Australia & have been seeing John Relic in Newcastle. He's the best yet & very quick to respond.
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