Anyone (or their children) have this?

My Carly was just diagnosed with this on Friday, just wondering if anyone here has this. Thanks!

PAM
ggg @ 31+ weeks

May I ask what this is? I feel bad no one has responded, but maybe like me, they don't know either?

Please educate us on this.


JW
b 20 b 14 b/b/g 8

"I am too blessed to be stressed"

No experience here, but I did a search and found a very instructive link here:

http://www.ninds.nih.gov/disorders/klippel_trenaunay/klippel_trenaunay.htm

There are also support groups you can find by doing a search on the internet.

Amy C

BBG born 9/04 at 36wks

Well, Klippel-Trenaunay is a vascular anomolie, it's a rare syndrome, so if you have it and have been diagnosed you'd know what it is. My dd had what we were told was a hemangioma on her leg, but it turns out it's not a birthmark, it is a vascular disorder that involves veins, capillaries, lymph tissue hypertrophy (swelling), and abnormal bone growth.

I have been to the online sites, I got right on the computer as soon as I got home, learned even more after the Dermatologist explained it to us.

It doesn't appear to be a severe case, but we will know more once additional tests have been done.

It's OK if there's only a few responses, if no one on TC has it then they really can't answer, thanks to those who have, though!

PAM
ggg @ 31+ weeks

Oh Pam, I'm so sorry. I just read this & the accompanying link. (((HUGS)))) No experience, but have an idea how heavy your heart might be about now.

Tulip & The Three Amigos
GBG born at 35w5d on December 31, 2002 - Happy New Year's Eve!!!

YES! You *can* breastfeed triplets!!!

I am a Velveteen Rabbit, and the birth, love, kisses & magic that are my children has made me Real.

Pam, I'm praying for your family, especially little Carly. I have never heard of this, but please keep us updated. My thoughts are with you. Becca

Check us out at...thepingels.com

Thanks ladies, we'e still basically in shock. Being told from the beginning that it was "just" a birthmark, and now being told that it is a progressive disorder, we're not sure what to think. It doesn't appear to be a very serious case, compared to some pictures I've seen online her case almost makes us think she doesn't have it. But, considering she was seen by the Director of Pediatric Dermatology + 5 other Dr's at NY Columbia Presbytarian hospital (now Morgan Stanley), we aren't taking it lightly.

The odd part is, she has been saying in the past 2 months or so, "my leg hurts", but we thought it was just because she's our active one, she's always getting hurt because she's so wild! To add to her problems, she also had glasses for severe far-sightedness, and a patch to help strengthen the eye that's already crossing, and she has a really goofy tooth in front, plus she gets bronchitis so easily. Poor kid, I just hope it's not severe and she can lead a relatively pain-free life!

PAM
ggg @ 31+ weeks