Can anyone help me? Possible PWS and mild KT

KatieG · #1 06-16-2011, 09:35 PM

Hello! I usually post on the Hemangioma board since my daughter had one removed in September.

My daughter has a spotty patterned mark on her leg. It was NOT present at birth. Around 8 weeks old I noticed one tiny red dot on the back of her leg. That is where her darkest spot is now. As she got older more spots appeared. Now they go from her knee all the way down to the bottom of her foot.

At first I was told it could possibly be CMTC. Then I was told it was a Vascular Malformation. At our last visit to Dr. Waner, he said it could possibly be a mild form of KTS.

All of these diagnoses are concerning to me. As of right now she has no other symptoms of any of these things (other than a vascular malformation). Her legs and feet are the same size and length. I guess I am just confused as CMTC and KTS say they both are present at birth and her marks were not.

I have never really seen any pictures like my daughters leg. Trust me, I have googled for many hours. Sorry these are not better. It's hard to take pics of a 14 month old on the move! Feel free to email me at: Katiegalvin02@yahoo.com

missy · #2 06-16-2011, 09:42 PM

Have you taken a look through http://dermatlas.com You might find something similar there.

Also, I can't remember if you've asked an expert here. If not, http://birthmark.org/experts.php

Missy

nickbar · #3 06-16-2011, 10:35 PM

Hummm. Interesting. I too have not heard a similar story with KTS or CMTC appearling like this. I would continue to keep photographing it and keep in contact with Dr. Waner on any changes.

KatieG · #4 06-16-2011, 10:37 PM

Thanks for the links Missy.

Does this even look like a PWS? I just want to know WHAT it is so we can move forward.

abatie · #5 06-17-2011, 01:17 AM

I know I read somewhere of someone being diagnosed with CMTC that was not noticed at birth. I don't know if I believe that one or if the diagnosis was correct because in what I have read everywhere else it was present at birth. In some cases people notice improvement over time but I have never heard of worsening like you are describing. In our case Becca hasn't shown improvement although as she gets older and maintains temperature better she doesn't have as big of color changes as when she was younger. In Becca's pictures taken immediately after birth you do not see the CMTC but it was noticed the day she was born. I am guessing the reason you don't see it in the very first pictures is because she was under the warmer and higher temperatures do make a difference. I guess I would lean against CMTC and KTS from what I have read and experienced. I don't know what to tell you about where to look next but just want to wish you the best of luck. Keep the board posted on what you find out!

alecsmum · #6 06-20-2011, 10:52 PM

Hi
This is exactly what my son has. He has a large pws on his right arm and back, present from birth.
Then, small stains started occuring on his legs and bottom, just like the ones in your picture.
Every now and again a new one pops up, say one a year.
He's 7 now and no kts. And no other complications at all, a happy, sports mad, super active and happy chap, who is popular at school and the best son a mum could wish for.
I completely understand your concerns, i went through exactly the same worries. But hopefully your wee love has nothing more than my son (it certainly looks the same to me) and all will be fine.
Good luck and if you want to chat off-line let me know.

KatieG · #7 06-21-2011, 01:48 PM

Quote:

Originally Posted by alecsmum

Hi
This is exactly what my son has. He has a large pws on his right arm and back, present from birth.
Then, small stains started occuring on his legs and bottom, just like the ones in your picture.
Every now and again a new one pops up, say one a year.
He's 7 now and no kts. And no other complications at all, a happy, sports mad, super active and happy chap, who is popular at school and the best son a mum could wish for.
I completely understand your concerns, i went through exactly the same worries. But hopefully your wee love has nothing more than my son (it certainly looks the same to me) and all will be fine.
Good luck and if you want to chat off-line let me know.

I would love to! My email is Katiegalvin02@yahoo.com

Did the Dr's every say what the stains popping up were? Thanks for the info about your son though! Makes me feel better. Do you have any pics of his legs?