Vascular Birthmarks Foundation Forum

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-   -   cafe au lait (http://birthmark.org/board/showthread.php?t=1773)

tvmom 02-01-2006 08:43 PM

cafe au lait
 
my 3 year old daughter has a rather large cafe au lait birthmark over her left eye. it kind of spills onto her forehead and down her nose as well. i've been doing a lot of research since she was born about different removal treatments, but i can't seem to find a doctor in our area. my other concern is that my daughter is african american, so scarring and how the area will look once treated are 2 real big concerns. does anybody have any information to share about this? perhaps you can recommend doctors in the tallahassee, florida area. i am willing to make a road trip if needed.

nickbar 02-02-2006 12:15 AM

Re: cafe au lait
 
You might want to email Dr. Mihm from the "ask the expert" as he does treat non-vascular lesions like your child's.*

Also, try contacting Dr. Jay Austen wausten@partners.org


Corinne

hankbartenbach 02-02-2006 02:56 AM

Re: cafe au lait
 
Hi tvmom,

First of all welcome to the group.

I am a 23 year old with facial PWS/SWS.

I agree with Corinne you should send a picture and ask some question to the Ask the Expert. Also, if you can look under the resourse section at the top of the website under for a doctor in your area or one that you are willing to drive to.

With what you discribed it sounds like your daughter has a Port Wine Stain (PWS) birthmark. Because it is in the eye I strongly suggest getting her eyes checked regularly for signs of glaucoma. If they find glaucoma she could have a form of Sturge Weber Syndrome (SWS). Only a MRI with/without contrast is the only way to tell.

In my personnal opinion scarring will be a very small factor for having laser treatment on her birthmark. Out of 18 year of laser treatment I have not been scared but once and it was a new laser still in experemental stages. A doctor is the only way to tell for sure though. I do know a couple of people that are Afrian Am that have PWS and their biggest consern is the pigmentation changing from the laser treatment in the area of the birthmark. A Dermotologist would have to answer that question as well.

Again I would strongly suggest getting the eyes checked out just to make sure. There is a lot of info on this group and groups linked to thsi group about SWS if you are intersted in doing research on it.

Hope this helps and if you have any other questions please ask we are here for you.

Hank

tvmom 02-02-2006 03:46 PM

Re: cafe au lait
 
thanks so much for your help guys. i have sent emails to both contacts, and i am on the phone right now trying to get an appointment with a dermatologist.

also, hank i wanted to ask you... my daughter's birthmark isn't inside her eye just over her eye. does that still sound like PWS/SWS? and for the african americans you know with PWS, do their markings look brown... or do they have that pinkish/reddish tone to them?

nickbar 02-02-2006 05:13 PM

Re: cafe au lait
 
Typically in darker skin it will still look redish. It is best to have this evaluated by the derm. to make sure. If it is a PWS, the lesion doesn't have to be in the eye to warrant the need for check ups with an Ophthalmologist. Ask the derm. if you should see an Ophthal either way...to make sure the lesion is putting pressure on the eye or the lid is not restricted.

The doctors I mentioned on my earlier post have a lot of experience and will be the best to tell you about treatment options. Keep in mind when you are seeing a Derm., that not very many doctors have the latest info on treating birthmarks. I am not saying the derm. you see will not...but it is always helpful to get the opinion from a doctor we know has treated them and sees them on a regular basis.

GOOD LUCK and please keep us posted.

Corinne

hankbartenbach 02-02-2006 06:31 PM

Re: cafe au lait
 
Hi,

I agree with Corinne, and she already answered the questions. It is still possible to still have problems with the eye both eyes if the birthmark is even near it. I have SWS but do not have glaucoma, but I am still going blind in both eyes from other eye condtions. The only way I have SWS is from the calsification on my brain (that is what the MRI's would find out).

For the markings I have seen pictures of both brown and reddish birthmarks.

Talk to you later.

Hank

tvmom 02-02-2006 07:05 PM

Re: cafe au lait
 
again thanks SO MUCH for your help!! i'll keep you guys posted...

circle15 08-19-2007 03:17 AM

Hi,

I am a 46 year old with a cafe au lait birthmark on 1/3 of my face. I have had approx. 3 laser surgeries. The first two were the red ruby laser and the third was the versa pulse laser. Although my birhtmark is still there, it is now significantly lighter. I use Estee Lauder's double wear foundation and it is plenty of coverage. However, now that I am getting older, I would like to do another laser surger to see if I can lighten is a little more so I can feel more comfortable in less make-up (make-up doesn't wear the same in older age-drat). I am wondering about other laser treatments. Does anyone know a good sight that would give me more information about laser options for cafe au lait. I keep reading about the YAG laser, but I would like to know more and am having a hard time finding infomation.


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