9 month old with PWS on 35%of torso only!

My daughter is 9 months old and has a PWS on about 35%of her torso. She has currently had 1 treatment of pulse dye laser treatment, she now is showing signs of her left leg growing considerably larger than her right. She has no other signs at this time but after reading and researching i am very confused and scared. Anybody with info on what steps i need to take as far as finding out what is going on in her body please help. I was totally misinformed about the PWS stain when they diagnosed it, because none of this stuff was ever mentioned to me. She has had a MRI of her spine, they did say that it could affect it, but it was alright and it showed that some of her PWS was muscle deep but not all of it. PLEASE HELP

[nickbar]

Hello,

It is important to have her evaluated by an experienced vb specialist.* I would highly recommend you contact Dr. Delfanian,... you can find his "expert" link on the front page of this website.* He specializes in Klippel-Trenaunay., which is associated with pws on the limbs and growth of the limb.*

We are hear for you...every step of the way.
If you have any questions, please feel free to email me

rinner* @ comcast* *.net (no spaces)

Corinne

I agree that you need to see a specialist. Our 3 month old daughter has PWS on her face and left arm, and her left arm is fatter (not longer) than her right arm. We researched online and this could be a potential symptom of KTW (as can having a longer limb). With KTW there is also often vericose veins, which I understand may not appear until the child begins walking.

The Dermatologist we saw at Seattle Childrens said he cannot diagnose KTW without doing an MRI on her arm. We'll need to put her under general anaesthesia to do this, so we're waiting until january when she'll go under for her first full-dose laser treatment. Not sure where you live, but I understand that Dr. Fishman at Boston Children's is an expert in KTW, we're bringing our daughter to see him next month for a second opinion on the laser treatment. I emailed him and asked if her arm is bigger than the other if it means its definitely KTW and he said not necessarily, it could just be larger because of the larger capillaries associated with the PWS. No way to know for sure without the MRI.

Good luck!
Megan

[swsc]

Hi misty72719 - Have the doctors mentioned Klippel-Trenaunay syndrome or Sturge-Weber syndrome? The VBF branch, Sturge-Weber Syndrome Community (SWSC) has an online support group and website: http://swscommunity.org

Please let us know if there is any way we can help.

Glenda

We have seen an ortho dr. and he has diagnosed Bailee with Hemi-hypertrophy so if anyone is educated on this please let me know. Thank you again

[KristieinStMarysGA]

Misty,


I googled hemihpertropy and found a decent website, done by someone who also has it here is the addy

http://www.geocities.com/HotSprings/Spa/6112/


Seems, to have alot of info, hopefully this will help you a little bit.

Good Luck, I will send good thoughts your baby's way!!

Kristie