Need advice

My 6 year old son has a portwine stain birthmark on his left cheek. Before the last procedure (in Feb.), the birthmark was looking great - very faint and hard to see most days. Since the last procedure, it has looked awful. It took much longer than normal for it to heal and it has stayed very dark and red. I had pictures made of him and his sister a couple of weeks ago, and usually the flash they use makes his birthmark virtually disappear. This time, the birthmark is very prominent. My husband and I are really upset and don't know what we should do next. Our child has endured so much, and it seems like it has gotten us back to square one. I don't know if we did too many laser surgeries, or what has caused this.
I'm considering ordering some of the CoverBlend cosmetics to use for a while - I don't know if it's the best kind.
Any advice/insight would be greatly appreciated!
Lisa

[hankbartenbach]

Hi Lisa,

I am Hank 23 year old with facial PWS/SWS

In my opinion, At your sons age it is most likely hormones, and summer time (when blood is pumping more) it is always going to be darker. I went thru the same thing, and will for the rest of my life. There is no such thing as to much laser treatment. From what you have discribed of your sons PWS I have a darker version just so you know. I have been doing laser treatment for 18 years now (started when I was 5) and the technology is allot better these days then when I was your sons age.

How often are you having laser treatment? Most doctors recommend every eight months, but it really depends on the person with PWS. Every case is going to be different. No one person is the same. They might have similar factors, but people react to treatment differently, hormones with PWS, etc.

When I was in elementry school I did have make up, but for a very short time. I stoped when kid found out and I got made fun of even more then before for having make up on. So I just ask for you to be careful when thinking about this. Social statis, and making friends where not very easy for me growing up with PWS. It really effected and still does effect my relationships in a dating prospective.

When you think the time is right, teaching your son how to deal with the pointing, laughing, and comments torward his PWS will be hard. He must learn how to let them all roll off his shoulders, or go in one ear and out the other. This will help him in the future to avoid deprestion, and to feel like a loner. I have been there and done that in my life many times.

If you want to talk more on that let me know or you can email me. (email is in my profile)


If you have any other questions please ask, we are all here for you.

Hank

1) Hormones and summer heat can make a pws look darker because both cause the blood vessels to enlarge and more blood, therefore, fills in the vessels making the stain look worse. Has your son started some new activity that he is "heating" up or outside in the hot weather a lot? Put an ice pack on it for a minute or two and see if it looks like it did (real light) and then you will know it is a temperature thing. If he is in pre-puberty or puberty that also makes them darker, as explained.
2) There IS SUCH A THING AS TOO MANY TREATMENTS. With the laser treatment of port wine stains it takes on a "laws of diminishing returns effect." Usually the first 8 treatments give the most clearance, about 75%. Treatments after that give marginal results (for most pws). A new laser or a laser with a new setting or a way to make the laser go deeper will then give you a better clearance but the fact is that the laser only reaches 1-2mm and about 7-8 treatments should clear that up. The stain that is remaining is usually much deeper than the laser can reach so you are wasting your money by getting treatments unless it has been a while, there is a new laser, a new adapter or something new thrown in to the mix.

Make sure you use the highest sunscreen on his face and ice his face when he gets in from working out and see if it lightens up. If you are having a hot summer and he's out a lot...just let it go.

You can also request a list of the wave-length settings and fluencies used for each treatment and I can go over them with you or our PWS doctor, expert, on our front page can talk to you about this so you are sure your son is getting the best treatment.

Linda Shannon
VBF President/Founder