PWS or Hemangioma?

#1 09-20-2004, 08:04 PM

We're considering adopting a child in Korea who has a birthmark on her face. It's light pink and now her eye has some pinkness. Doctors there have said it's not Sturge-Weber Syndrome and that they will fade by 2-3. Is it possible that the redness in her eye is a hemangioma, not PWS? Any help is greatly appreciated!

#2 09-20-2004, 08:55 PM

I have a couple of questions for you. How old is the baby/child? Has the eye lid color always been there and maybe gotten darker/brighter??? How did they rule out SWS? I can't see the child so I can't say if it is pws or not. My son has SWS and a PWS and there are days his shows up more in areas that you really can't tell on other days.
Jinny

PS- If you have a picture and would like to email it to me, I might be able to help. mom2austinhunter@msn.com

nickbar · #3 09-20-2004, 10:52 PM

Is she on Rainbow agency listings?

Corinne

#4 06-15-2005, 02:28 AM

It's taken me a while to return to this site. We finally brought our daughter home May 3, 2005. As of today, she saw a ped derm here that confirmed it's PWS and says there's no SWS. She recommends laser tx and says she'll need 5-7. We discussed both using g.a. and doing them with just the numbing cream. As some of the pws is very close to her lower eyelid, at least a few will have to be done under g.a. to get close enough. After reading the site today, I'm thinking they should all be done that way. Any advice?

nickbar · #5 06-24-2005, 05:57 PM

Congrats on your new little girl!!!!!!

Often the laser surgeon will do test spots while child is awake...this might give you an idea of if you want to do g.a or not. My son had test spots done with out g.a the first time and it was very quick and he recovered pretty quickly. I think he was more angry about being held down. (he was only 4 months old). It was similar experience as having immunizations.

Also, ask the doctor about his/her expectation on maintenance laser treatments (how often). PWS will eventually re-appear.

GOOD LUCk

Corinne

#6 06-28-2005, 01:52 AM

Thanks for the advice. I spoke w/a ped derm and she said she didn't know of people requiring "maintenance". I'm now taking her to two different plastic surgeons next week. I expect they will tell me that the "maintenance" is likely. Now we'll just see if they concur with each other!

#7 06-29-2005, 10:38 PM

ALERT>>>ALERT>>>ATTENTION

Doctors in Korea do NOT KNOW HOW TO DIAGNOSE A VASCULAR BIRTHMARK. You cannot go by what they say. You absolutely cannot go by what they say. Get the picture. Get the medical report on her and have one of my docs review the pictures or send to me and I will have Dr. Waner and/or Dr. Fay look at it and get back to you asap. It could be PWS, it could be Hemangioma, it could be CMTC or SWS or something else. Usually they will give you a picture or a link to look at the picture. I will go look for you and type in the report if they let you see exactly what was written and what/if any/ tests were done. They usually do not do any imaging.

Our docs are good about getting back quick on potential adoptions.
Feel free to write to me at hvbf @aol.com

Linda Rozell-Shannon
President/Founder VBF

#8 07-06-2005, 12:03 AM

We (VBF) do not promote the use of lasers on a baby without a mild sedation or general anestesia. If the eye area is involved the baby will need a corneal shield and treatment should be under some sort of sedation. She will be too anxious to handle it. Also, since the stain is near the eye, have her tested every 6 months for glaucoma and make sure she does not have SWS which cannot be ruled out (if there is stain near her eye) until she is 3 or 4 years old. Even then, the glaucoma can come at any age. Chances are she is fine, but now that you know it is a PWS and it is near the eye, you need to make sure the vessels are not behind the eyeball causes pressure (glaucoma) or in the head area.
Just keep on top of this and ask our expert on SWS, Dr. Comi on our front page of our website.

Linda Shannon
VBF President/Founder