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

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  #1  
Old 07-15-2011, 02:44 AM
swaltjen swaltjen is offline
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hello!

my name is sarah. my son (almost 6 months) was just diagnosed with a port wine stain. the birthmark starts on his (right) hip/buttock and extends down to his toes. this birthmark was present at birth but a few doctors we saw early on said it was "just a birthmark" and not to worry. we switched pediatricians when he was 2 months and our new pedi was worried he may have KTS as she has another patient in her practice with KTS.

we live in the suburbs of cleveland, ohio and are lucky to have 2 major hospitals that have vascular anomolies programs. we saw a team of doctors on monday and were given the diagnosis of port wine. they suggested we start laser surgery and scheduled the first round for september.

for some reason i am really struggling with this diagnosis. i have been researching KTS, port wine, CMTC, you name it on this website and others since he was about 2 months old and i am not convinced it is a port wine stain. through my research i feel that his birthmark may be CMTC. i will be contacting the team to discuss my concerns and to determine why they think it's a port wine stain vs. CMTC, but i thought i would post a picture to see if anyone else has seen a birthmark similar to my son's.

i have read that port wine stains (KTS) and CMTC can be hard to distinguish as they present some similar symptoms.

thank you for reading my post. as others have stated i am just trying to do what's best for my son and be his biggest advocate. i don't want to challenge the expertise of the doctor's that we saw, i just want the best (treatment) for him.
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  #2  
Old 07-15-2011, 12:58 PM
missy missy is offline
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Hi and welcome!

As you're finding, getting an accurate diagnosis right away can be difficult. It sounds like you're in good hands, though, and you have the right idea about asking WHY a certain diagnosis is given over another. I think you're on the right path. Good for you for realizing right away that you're the best advocate for him.

Please remember that even experts might have a difficult time knowing exactly what's going on until your son grows a bit.

Here's a caution, though: don't get so caught up in this one thing that you don't enjoy every moment. When my son was between 2 and 3 years old, we found he had pretty severe autism. It consumed my every waking moment (and most of my sleeping ones LOL ) for a while. It's hard not to go there ... you feel you have to know everything right now!!

Other patients and parents will post soon, I'm sure.

You are welcome to go and ask some experts: http://birthmark.org/experts.php Right away, I'd recommend Dr. Nelson, especially if you have questions on the diagnosis.

This fall, November 4, we have a conference that might interest you:
http://birthmark.org/node/205 If you can make it to that (it is in California), you'll find a LOT of excellent information there.

All in all, he's a cutie patootie!! Is he a good baby so far? Sleeping through the night yet? LOL

Missy
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  #3  
Old 07-15-2011, 01:12 PM
abatie abatie is offline
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First off I agree with Missy. Don't miss enjoying the here and now because you are focused on a diagnosis. I did that and have more regrets than I can express.

Does the marking get lighter or darker with crying or cold? I am not an expert (just a parent) but it looks more like CMTC to me. I have a child with CMTC and we went through the whole "it's just a birthmark" thing. Also, I noticed you were using PWS and KTS together. They are two very different conditions. KTS was considered with Becca and although it was ruled out when she was younger the doctors told us that there is a chance it could be reconsidered as she grows.

My other advice is that sometimes trying to get the correct diagnosis takes time. You need To find doctors you are comfortable and try to stick with them. They may not always have the right answers but they will work harder to find them for you if you aren't doctor jumping.
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  #4  
Old 07-15-2011, 10:26 PM
KatieG KatieG is offline
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I have a post on this board somewhere as well. My daughter has funny marks on her legs (that were not present at birth) and KTS and CMTC have been brought up for her as well. She is 15 months old and we are just waiting and seeing at this point.

Email me if you want to chat! Katiegalvin02@yahoo.com
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  #5  
Old 07-16-2011, 02:14 AM
swaltjen swaltjen is offline
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thank you ladies for all of your kind words and encouragement!

i guess my struggle with a diagnosis is because we have already scheduled his first laser surgery. now that i have had time to digest all the information we got this week, i don't think that i am confidant about starting laser surgery so soon. i think we are going to follow the wait and see approach like katieg and her family. i already feel better making this decision!

my son, elliot is a wonderful little boy! he gives us such big belly laughs and we really enjoy every moment with him... he's not a fan of daytime naps, but sleeps really well at night (knock on wood...) we also have a 21 month old son, henry and they are starting to become good buddies

thanks again! i am very grateful for this website and the members on this forum! i will keep you updated!

sarah
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  #6  
Old 07-16-2011, 01:41 PM
missy missy is offline
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Little Baby Belly Laughs!!! I love it!

Do keep us updated and come back with anything that's on your mind.

Missy
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  #7  
Old 07-18-2011, 02:17 PM
MrsAntilles MrsAntilles is offline
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Hello, Sarah. I'm Stephanie. My introductory post is titled "Introduction and pictures" My son also has a mark on his right leg from hip to toes which the dermatologist is calling a port wine stain. He is only two months old, so we won't get an actual diagnosis until he's old enough to be sedated for an MRI. I too have become fairly obsessed with this site, even though I feel confident in the doctor we have been to see. Unfortunately being new at this I don't have any ideas or advice for you, but I hope to become part of the support system here. I look forward to getting to know you

Quote:
Originally Posted by swaltjen View Post
hello!

my name is sarah. my son (almost 6 months) was just diagnosed with a port wine stain. the birthmark starts on his (right) hip/buttock and extends down to his toes. this birthmark was present at birth but a few doctors we saw early on said it was "just a birthmark" and not to worry. we switched pediatricians when he was 2 months and our new pedi was worried he may have KTS as she has another patient in her practice with KTS.

we live in the suburbs of cleveland, ohio and are lucky to have 2 major hospitals that have vascular anomolies programs. we saw a team of doctors on monday and were given the diagnosis of port wine. they suggested we start laser surgery and scheduled the first round for september.

for some reason i am really struggling with this diagnosis. i have been researching KTS, port wine, CMTC, you name it on this website and others since he was about 2 months old and i am not convinced it is a port wine stain. through my research i feel that his birthmark may be CMTC. i will be contacting the team to discuss my concerns and to determine why they think it's a port wine stain vs. CMTC, but i thought i would post a picture to see if anyone else has seen a birthmark similar to my son's.

i have read that port wine stains (KTS) and CMTC can be hard to distinguish as they present some similar symptoms.

thank you for reading my post. as others have stated i am just trying to do what's best for my son and be his biggest advocate. i don't want to challenge the expertise of the doctor's that we saw, i just want the best (treatment) for him.
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