Re: Laser treatment
My daughter Kate is almost 3 months old, she was born with an extensive PWS across her face (chin, jaw, cheek, temple, half her scalp), down her neck, on her back and chest, left arm and left hand. Today we went to Seattle Childrens Hospital for the first test of the pulse dye laser, it was pretty intense for us, having to hold her down while she screamed with her eyes covered with pads, but she seemed to forget about it quickly after. we used no numbing cream for the test, which was 3 spots on her face and 3 spots on her arm. Right now she just has 6 dark bruises, we'll wait and see which spots do the best so we can begin treatment in january and know what level laser to use. She'll be put under for the one in January. It's so big the doc doesn't think he'll do it all in one day, but he wants to begin with the facial PWS as soon as possible. After January he said come back every other month, about 6-8 times, for best results.
Hank, I'm glad you say it doesn't hurt much. with an infant who can't speak it's hard for us to know. We meet with an opthamologist in january too to see about glaucoma. She may also have KTW (Klippel-Trenay- Weber, can't remember the spelling) b/c her left arm is 1 cm wider than her right and if it is KTW it will continue to grow as she gets older. We need an MRI to diagnose this, but she needs to go under for that so we'll wait until one of her laser treatments when she's already going under anyway.
It's great to read everyone's posting s and know we're not alone. we worry about the social impact on kate as she gets older but will let her decide if she wants to use makeup. we'll have to figure out how to make her confident about it yet also explain that we were zapping it with lasers since she was a baby - that is sending mixed messages an i don't know how we'll cover it, i guess i have a few years before i need to worry about that though...