6 month old with PWS

babylucy · #1 11-06-2008, 06:00 PM

My son was born with a PWS on his outer eyelid, brow and forehead. We have seen a pediatric opthamologist who said everything looked great. We also just visited a ped. dermatologist who said it looked to be a PWS and recommended getting lasery surgery but not until he was 3 - 8 years old or when he or other kids starting noticing it. Is this waiting too long? I see here that everyone is talking about the earlier the better. My dr. is Renee Howard and she is a Professor at UCSF in San Fran. She came highly recommended. She is not concerned with SWS because she said it is on the outer portion of eye and not midline. She also said there is tiny chance that it is an overgrown salmon patch. I'm not sure what to do at this point. I hate to wait too long. Any advice?
I have attached a pic of his PWS.
Thanks
Shelley

zuzuspetals · #2 11-06-2008, 09:14 PM

I tend to err on the side of caution, and I would recommend that you get a second opinion. Most doctors agree, based on research and evidence-based practice, that laser treatment to PWS is more effective when started earlier.
I do not know a lot about Sturge-Webber, but I know that my doctor said that when the PWS is any where in the V-1 area (forehead/scalp), there is higher incidence of Sturge Webber. My doctor also says that this area responds BEST to treatment.
I am just a parent of a daughter with a PWS, and certainly not any expert! I recommend e-mailing the experts on the home page - I have e-mailed them before and they have always been quite helpful. Dr. Nelson treats our daughter, and he is the expert on PWS here on the site. I e-mailed him several times before even seeking him as a doctor, and he was always informative. There is also a Sturge-Webber expert to e-mail.
Good luck finding answers! I can tell your son is a cutie!

erih · #3 11-07-2008, 12:06 PM

Hi! I have a birthmark similar to your son's (I'm pretty sure I don't' have SWS tho). According to my current doctor, the earlier it is treated the better (mine might not "go away" completely because I've waited until i was ~20 to start actively getting treatments).
I agree with zuzuspetals in getting a second opinion. And, tho it sounds like you've done some already, possibly doing more research into PWS and SWS.
Luck to ye and your son in whatever you decide tho!

oh, and in case you were worried about it, I personally did not get much teasing as a child about my birthmark (I come from a military family and lived mainly on base so this could be why). I have met a lot of curious kids and a few "pushy" adults (told me about treatments, etc without me asking them).

Superchikk · #4 11-10-2008, 09:32 PM

First of all, if you are not comfortable with what your doctor has told you, get a second, third, and fourth opinion! You do not have to go by what one person says, especially if you question it AND it is in regards to your child.

Our doctor (Dr. Buckmiller at Arkansas Children's Hospital) told us that the PWS typically responds better to treatment when it is done as early as possible. She started our son at 8 months. He's had two treatments and we've seen tremendous improvement already.

Our son's PWS is also on his face -left cheek, and we had been concerned about cosmetic stuff. He was also checked for SWS and will continue to receive annual check-ups with the eye doctor to make sure the PWS is not causing any problems.

We were told that treatment was medically necessary (not just cosmetic) because it was on his face and could cause medical problems as he ages, i.e. stippling, bleeding, etc. Our insurance company even thinks it is necessary (no appeals or begging!) because it is on his face.

Again, if you aren't sure about what your doctor told you, get another opinion. It won't hurt the doctor's feelings and will be better for you in the long run, even if you decide to do what your doctor has already suggested.

babylucy · #5 11-10-2008, 10:06 PM

Thanks for the advice. I called another office UCSF Dr. Illona Frieden, who I have heard mentioned on here is pretty good, for an appointment. They can't see me until 1/29/09. However, I found out the derm we went to see actually works with her in that office at UCSF and there is a chance that I will actually see the same Dr. again as Illona Frieden only comes in the last 5 minutes of the appt. I feel kind of stuck right now! On friday I left message for the derm with my concerns. Hopefully she will call me back.