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-   Port Wine Stain Help and Resources (http://birthmark.org/board/forumdisplay.php?f=10)
-   -   Advice (http://birthmark.org/board/showthread.php?t=3751)

WorriedFather 03-17-2010 11:42 PM

Advice
 
Dear All,
We recently had a newborn baby a few days ago and I wanted to some advice and support with all the new information we are finding out. Our little angel was born with a PWS on her right cheeck, under her nose and a little patch above the eye.

As with the internet these days, I am starting to get really concerned with everything spiralling out of control. We are working hard to get an appointment with a top doctor in the next two weeks. We are meeting the eye doc on Wednesday.
We have a few basic questions?

What are the steps to rule out Sturge Weber?
What is the best laser for Port Wine removal?
How early can you start the treatments?
Are there any behaviours that she has right now to know she has Sturge Weber?

Please write back if you have any feedback. We are so worried and would love to hear from you.

Worried Father

missy 03-18-2010 12:22 AM

Hi there and welcome.

First, write to Dr. Comi through our expert page: http://birthmark.org/experts.php She is really great and will answer all your SWS questions.

Actually, she'll probably answer all your laser questions too. :)

See also: http://swscommunity.org and there is a ton of information there!

Missy

WorriedFather 03-18-2010 01:27 AM

Missy,
Thanks for getting back to me. Are you a parent who have had similar issues?

addiemom 03-18-2010 02:40 AM

Hi there,

I have a six year old daughter with a pws under her left eye. I know how many questions you must have. I remember the most important thing was having a pediatrician that you trust. Make sure you do your own research. I was given very bad advise by some doctors, one Dermatologist told us it wasn't a pws...she has a text book pws. That is good that you are meeting with the eye dr. For us they did a skull x-ray to rule out SWS when she was about 6months. All the new studys say that you can start your laser treatments early. They say that they have better results the earlier you start. My baby has amazed me. She is in school now and she has LOTS of friends. It is really neat to hear the reactions from the kids at school when they find out she is having it removed....they don't understand..."doesn't she like it?" She has gotten a few mean comments but she handled it very well, her teacher, father and myself got way more upset than she did. Good luck with everything...ask every question you can think of when your with your Dr.

adddiemom

WorriedFather 03-18-2010 11:20 PM

AddieMom,
Thanks for your reponse. We are looking into the distribution of the port wine stain and the possible link to SWS? Do you have any information that would be able to help us. Our little one has PWS on her right cheek,inside of her nose and a little just above her nose. We do not have any on her forehead.

I just wanted to get your opinion on this.

Thanks so so much for your help!!!

Worried Father

kgregory 03-21-2010 11:03 PM

Worried Father
Though i don't have any factual information or advice, I came across your post, and I just wanted to share with you my personal experience with a PWS. I am 15 and was born with a PWS on my forehead and the area around my eye, and though I don't know if my parents were worried or not, I've been getting laser treatments since a young age, and now at age 15, it is almost completely removed, and is invisible with makeup. I just thought you might want to know that your baby can still lead a completely normal social life, and most kids are very accepting of the birthmark- most kids when I was younger simply asked me what happened (thinking it was a bruise) and were accepting of it. In fact, a lot of my friends have urged me to not get it completely removed because it makes me an individual.

I just thought it might be comforting to know that I turned out completely normal, even with a big pink birthmark on my face :)

WorriedFather 03-23-2010 02:49 AM

Kgregory,

I am completely fine about the PWS on her face. My major concern right now are all the risks that go along with it in the glacouma and SWS. My wife is a mess and is freaking out. I am trying to stay calm and tell her that every person is unique and each case is different.

She has it on her right cheek, on the inside of her nose, a little above and below her eye.

Let me know your thoughts,

Worried Father

zuzuspetals 03-31-2010 04:20 PM

Worried Father,
I am a mother of a now three year old daughter with a facial PWS in the same areas as your child. I felt the same way that you and your wife do when my daughter Josie was born. It can be so overwhelming, mostly because a lot of the questions about your child's future are left up to fate. It can be so tough - I still worry about my daughter and her birthmark, even though we have had three years without any complications.
I am not a medical expert, but I can tell you what our pediatric dermatologist and other docotrs have told us about Port Wine Stains and Sturge Weber.
The PWS can be located in three different areas of the face: V1 , V2, and V3. The V refers to the 5th cranial nerve, which is the trigeminal. V1 is above the eyes, V2 is midface, and V3 is the lower face/chin. Children with PWS on the V2 and V3 regions have little-no risk for Sturge Weber. The risk increases when the birthmark is on the V1 region. However, most children with PWS on the V1 region do not have Sturge Weber.
My daughter has a tiny bit of the PWS on the area above the eye and a bit on the temple, which are V1 regions. However, because it is so minimal in this area, the doctors decided that an MRI was not warranted. Of course, I still kept an eye out for seizures, but we did not have an MRI. At age 3, she has had no signs of Sturge Weber syndrome, and she is perfectly happy and healthy and bright!
Because your child, like mine, has a bit of PWS above the eye, you will probably want to talk to your doctor about eye examinations for glaucoma in that eye. Children with PWS on and around the eye region are at increased risk for glaucoma. Josie received her first eye examination under anesthesia in conjunction with her first pulsed-dye laser treatment at 3 months old. She continues to get regular eye examinations to check for glaucoma. She does not have glaucoma or any increased pressure to date. She does, however, wear glasses (neither my husband nor myself do), and ironically her birthmark eye is the normal one!
In short, although it is necessary for you to take precautions in proper treatment and diagnosis of your child, it is also okay to take a breath of relief knowing that things will more than likely be okay. If you are taking to doctors that you trust and educating yourself on the subject, then you are already ensuring the best possible outcome, no matter what.
Best of luck in finding your answers!
Katie
MOBB Josie

WorriedFather 04-01-2010 03:37 AM

Katie,
Thank you so much for your email. We have already seen our eye doctor two weeks ago and so far she is doing great. We will have regular check ups to monitor the situation. We will see our Dermatologist on the 16th April for our first consulation. Do you have a personal email that we could reach out to you on? My email address is markccarr@hotmail.com and my wife is carolinegay@yahoo.com. Your email really made us feel better.

Thank you so much and we look forward to hearing from you,

Worriedfather.

zuzuspetals 04-01-2010 03:08 PM

e-mail
 
Absolutely! You can e-mail me anytime at saskwatchkat@gmail.com

Katie


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