7 month baby, birthmark on leg - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

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

Reply
 
Thread Tools Display Modes
  #1  
Old 12-18-2009, 07:40 PM
ladybug78 ladybug78 is offline
Junior Member
 
Join Date: Dec 2009
Posts: 8
Default 7 month baby, birthmark on leg

My daughter was born with a red/pink birthmark covering part of her knee and thigh. We didn't think about it much until we saw a pediatrician who seemed alarmed, told us that it was a port wine stain and that we should "keep an eye on it" because the leg might grow larger than the other leg and it might need laser treatment. We think that the mark has actually gotten lighter since she was born.. and previously, doctors had just looked at it and not said much, another doctor (in the same pediatric group) even told us that it looked like a salmon patch and might fade away.

Now, of course, I'm terrified and reading about port wine stains and getting more terrified. There's all this info that says that it's important to treat during infancy to avoid progression. At the same time, I can't find that there's any clear diagnostic criteria between port wine stains and salmon patches. It seems like the only way to tell is to wait and see if it gets worse.. but if I wait until it gets worse to treat it, the chances of successful treatment decrease.. so.. what to do?

I'm tempted to ask at our ped. appointment next week for a referral to a pediatric dermatologist.. but that's going to cost us a lot of $$ and I'd hate to spend the $$ just to be told "there's no way to tell what it is at this point and we'll just have to keep an eye on it".. while, of course, on the other hand, I don't want to be a negligent parent and miss a chance to treat something that could become a serious problem for my daughter when she's an adult.

The real problem is that I don't know anything about vascular birthmarks other than what I've read online and it's very difficult to relate this internet info to the actual splotch on my daughter's leg.. so I'm posting a picture and hoping that someone with more experience than I can offer some insight.

I'm also going to make sure to see the most experienced doctor in our pediatric group at our appointment next month.. and pump him for information about the subject before making any final decisions on the dermatology appointment. I will certainly value the perspective of a doctor who has been there to see many birthmarked children grow up.. It's hard being a parent!!
Reply With Quote
  #2  
Old 12-18-2009, 08:39 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,718
Default

Here's what I would do:

1. Send that pic to Dr. Nelson via our Ask the Expert page.

http://birthmark.org/experts.php

He will be glad to send you his opinion.

2. Evaluate the cost benefit to go see the ped derm. If you can afford to go have a consultation, then do that. It will get your foot in the door, so to speak, for later. Rather than being a new patient and having to wait for an appointment if you need one later, you will be an exisitng patient with a file! Also, you can get their opinion.

Also, I don't think you are missing an opportunity. Remember that the photos you see on the internet are often the most extreme cases (even here sometimes). Yes, it may need laser treatment in the future. It may not. It is something to research and educate yourself about, so you will feel confident in your decisions.

But do not feel like a bad parent or that you aren't doing what you are supposed to be doing. You're where you are supposed to be.

And, welcome!

Missy
Reply With Quote
  #3  
Old 01-21-2010, 03:33 PM
samsherman samsherman is offline
Junior Member
 
Join Date: Jan 2010
Posts: 8
Default

Hello,
I just saw your post and just posted something similar myself. My daughter, now almost 10 months, has a PWS on her back and leg and is being evaluated and followed. Just curious as to what is happening with you and your daughter.
Best,
Samantha
Reply With Quote
  #4  
Old 02-22-2010, 11:20 PM
Merereb Merereb is offline
Junior Member
 
Join Date: Jan 2010
Posts: 3
Default

Hello,

I have a daughter with PWS on a lot of her lower body, leg, back, etc. Her docs said the same thing about watching her development and the dermatologist didnt' seem to think it was KT Syndrome. Her PWS looks similiar to the pic you posted. Hopefully your daughter's is simply cosmetic and nothing will come of it. Best of luck to you and your daughter.
I do recommend seeing the pedi-derm, if nothing else to put your mind at ease.
Reply With Quote
  #5  
Old 02-23-2010, 03:13 AM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 236
Default

I initially didn't know if spending the money on a pediatric dermatologist was going to be worth it. Boy am I glad we did. Not only did we get a CMTC diagnosis, but we found out she had three holes in her heart (thanks to a referral by the ped. derm.) and we got our foot in the door with doctors to keep on watching the size difference between my daughter's legs. It was so worth the money!
Reply With Quote
  #6  
Old 02-23-2010, 03:52 AM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default

THe great thing about our ask the expert option is no $!

Dr. Nelson will be a great option for information on PWS and possible treatment options. Yes, early intervention of the pws can be beneficial, but in my opinion you have time to get proper diagnosis and opinions.

HATS off to your pediatrician for not dismissing this and he/she may be a huge support in getting this covered by insurance. Also, don't panic when ready stuff on the internet. VBF is a great resource, but we see the worst of the worst here...and even though your child should be evaluated...it may not be like other cases you've seen pictures of/read about.

You are off to a great start...getting educated, finding support and gather opinions from specialists. I do want to stress that there are very few doctors that are really familiar with the latest prococol for treating vascular cases. If you need any help, please let me know
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #7  
Old 03-22-2011, 02:08 AM
KatieG KatieG is offline
Senior Member
 
Join Date: Jun 2010
Posts: 143
Default

Did you ever get a formal diagnosis? My daughter has a similar looking mark on her leg but I was told it was not a PWS. Just curious
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