Treatment
I’m just one parent here, so all I can tell you about is my own experience: we took Baby Addy to a dermatologist who specializes in treating kids with port wine stains (Dr. Zelickson, you’re awesome) with pulse-dye laser treatment.
Basically, he hits Addy’s port wine stain with a yellow laser; because of the color spectrum, the red blood vessels absorb the yellow light, heat up, explode and die. When they die, they leave purple bruising behind, which clears up within a week. Overall effect: fewer blood vessels. And then we hit them again. And again.
In layman’s terms, it’s weed-whacking. The blood vessels grow as Addy grows, so we hope to weed-whack those suckers faster than they grow with her. That’s why we attacked them early (while they were young, easily-killable weeds), rather than waiting until she was older and the vessels were larger, tougher, and more numerous.
Results? Awesome. The stain is smaller and lighter. But because Addy’s happens to be more resistant (how appropriate for my stubborn eldest), we’re still weed-whacking after 30-some treatments, instead of the 12 to 20 they originally told us she might need. (It’s always hard to estimate, because each stain has different size & depth) But the progress so far has been fantastic. People mistake her stain, which previously lived up to its ‘port wine’ nomenclature, for a sunburn. Yessssss.
Each treatment requires Addy going under general anesthesia, since powerful lasers pointed at a squirmy child’s face would otherwise be cause for concern. I know some dermatologists just use local anesthetic or numbing cream (particularly for older kids or smaller stains), but as far as I can tell, Dr. Z. puts all of his kids under general anesthesia as a precaution.
In other news, I’ve heard that there might be some application for newly-improved cancer treatments to port wine stains: new cancer treatments cutting off blood supply to tumors (depriving them of their lifeblood) could potentially be applied to wreak equal havoc on the blood vessels of port wine stains. I shall stay tuned…
Posted on July 16, 2013, in 3. Addy Stories & Experiences and tagged Port Wine Stain, Treatments. Bookmark the permalink. 4 Comments.
Jennica
What Happened To Her Face? 
🙂 Combination of drilling Dr. Zelickson for information whenever we go in for a treatment, and my mom (who is a doctor). Nana keeps her eyes and ears open for port wine stain stuff in the medical community, so she’s the one who recently alerted me to the development that they’ve discovered that port wine stains are not hereditary. (She’s also the one who practically pulled an all-nighter right after Addy was born, looking for PWS experts; she tracked down Dr. Z.) Dr. Z. is the one who told me about the potential application of cancer treatments to PWSs; he learned about it at a conference, I believe.
Thanks! I am a veterinarian and having some medical knowledge helps. I literally spent the day and night sylvie was born researching PWS on my iPhone in between nursing sessions. T was very overwhelming. Where do you live? We are in Atlanta and are also lucky enough to have access to great doctors. We see Dr Mary Spraker, who is a pediatric dermatologist who specializes in laser treatments, etc. very lucky to have great care so close to home. Thanks for the prayer for Sylvie and the great info on what to expect with the anesthesia- so so so appreciated!
Overwhelming, indeed! If not for Nana, it would have taken me months to get around to treating Addy’s PWS. There’s already SO much information for a new parent to absorb (especially w/ a first baby) – diapers, feedings, carseats, how to keep small human alive, etc., that I could hardly process any further info. For the first few weeks, I just did what my mother told me. 🙂 She found Dr. Zelickson up here in Minneapolis; he’s a dermatologist who treats PWS kids once a month at Children’s. (We’ve known people who drive in from other states for his treatments.) That’s awesome that you found a peds derm who knows laser treatments, and close to home, too!!
It is so great that you have seen so much progress with the treatments. Those new cancer treatments sound promising! It is encouraging to think about what new and improved (andante permanently effective?) treatments may become available as our girls get older. Where did you learn about the newer cancer treatments, and where on general do you get most of your current portwine stain info? Thanks