Ok, so I've only posted one time on this forum back in July 2009. I didn't respond to any of the responses though... mostly cuz it took so long to get any lol! I didn't even know I had any responses until today- but that's ok! My original post was for my daughter who is 17 months old now. She has a PWS on her left hand, arm, shoulder that goes up to her chest and back, but it doesn't cross her mid-line. It's the darkest on her palm and fingers.
As an update, we went to see Dr. Yakes in Denver to check to see if she had any AVM's. He did an MRI- which fortunately, was negative. So she just has the PWS, no AVM's. She still has swelling in her left arm, but it's less noticeable now that her right arm has caught up with it's growth. So, we've just been waiting to see what happens.
Just recently, I took her to the dermatologist for the first time to have her PWS evaluated. Also, because she had a sore on her shoulder (on the PWS) that was very weird. It started as a dry spot, then opened up into a wound- she didn't have any trauma there or anything, it just appeared. Of course, it was difficult to stop her from picking at it (which made it worse) but her PCP thought it was contact dermatitis and said to try hydrocortizone cream. And it helped, but it was still there when we saw the dermatologist. Anyway, long story short, the dermatologist had told me that people with PWS's can have ulcerations that occur from time-to-time on their PWS? Has anyone else had issues with that?? Now, the doc also said that she didn't know whether it was eczema or an actual ulcer, cuz my daughter has mild eczema as well.
However, after we found out about ulcerations, we started looking more into the laser therapy. We don't want her to have these reoccurring sores on her PWS, you know?! So, we found out that there's a doctor in Albuquerque who is a pediatric dermatologist and she does the therapy. I haven't spoken with her yet and I'm assuming since my daughter is so young, she'll have to be put completely under for the procedures. Does anyone know, or have ANY info regarding long-term effects of repeated anesthetic procedures on infants?? That's one thing I'm mostly concerned about. Also, for the people who've had infants go through the laser therapy, does anyone know what kind of anesthetic agent is most commonly used?? Just so I can research it a little on my own. I'm still debating if this is something I want to put her through.
She did really really well at Dr. Yake's office. He was fantastic by the way! They had to put her completely under to do the MRI (so she'd stay still). Although, I'm not sure what agent was used.
Any info would be GREATLY appreciated!