Long-term effects of repeated anesthesia? And ulcerations occurring on PWS???

[Alisia1223]

Hi guys-

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!
Thanks

[missy]

HI there,

Look up the words "cobble" and "bleb." That sounds like it might be what you described and is very common in PWS. Laser treatment will usually help prevent those from forming, so you should absolutely look into it.

Your child must be more than a year old by now, so they probably wouldnt have to put her under GA. Instead, they would apply a numbing cream to the area. Having laser is usually described as being as painful as having a rubber band popped against the skin, so putting her under might be too much.

So, speak with the doctor first. If they do prefer to put kids under, then ask what they use and what the effects are.

Missy

[blueice99]

I also have concern regarding GA. Thank you, Alisia1223, for raising this question. When I was in the U.S., my dauther had four laser-treatments without GA (started when she was 10 month old). But we moved to Singapore recently and the dermatologist we saw here insisted my baby should have GA because she crys too much and is hard to control. But I think if we have enough people to hold her, it should be fine. She is a little baby anyway, how strong she could be. Is it really necessary to have GA?