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tere83 07-20-2012 03:57 AM

Dermatologist dissapointment :(
HI everyone, i recently found this board and decided to join today. I have a seven week old daughter who was born with a port wine stain on the left side of her face. Starts above her lip and covers her left side completely from lip and over her scalp, all the way to the back of her neck. I love my baby so much so needless to say after her visit to the dermatologist i left practically in tears. Everythings gone good so far: her eye was checked and no glaucoma, her MRI came back completely normal so i thought all that was left was to start a treatment plan. The dermatologist was so useless and not very helpful. He said he didn't' recommend laser treatment until she was way older and that there was no need for her to be treated so young. Really? that's the complete opposite of what i was expecting to hear. Before this appointment i read the posts on this forum and read how so many of you moms have had your babies treated early. All the articles and information i've reviewed from other PWS sites have stated the benefits of doing the laser young before the stain had a chance to progress and become harder to remove. I cried the whole way home. i feel like I've let my daughter down because instead of walking away with a treatment plan for her i walked away empty handed and no better off than we were before.

missy 07-20-2012 02:58 PM

Hi and welcome!

What age did he think treatment should begin? Seven weeks is pretty young to begin, but what does he consider is not too young?


tere83 07-20-2012 06:37 PM

He was not very specific about anything we asked. My husband asked him at what age he thought she should begin treatments. His reply was just 'when she's older'. The youngest I've read someone have their baby treated is 5 weeks. I new to all of this so I don't know if I'm just wrong for wanting treatment so early

swaltjen 07-21-2012 05:40 AM

Congrats on your little girl!

It is my understanding that doctors generally don't like to perform any kind of surgery on children under 6 months, unless of course, it is a life saving surgery. My son was diagnosed with a PWS right at 6 months and the dermatologist said it was just the right time... My husband and I have decided to take the wait and see approach regarding his PWS. It is a year later now (he's 18 months now) and his PWS hasn't changed. There has also been some research published recently that general anesthesia on children under 2 isn't so great for their developing brain.

Considering my son's port wine stain is on his leg, is light in color, and we haven't noticed any changes, and his age, we are still holding off. If any of those things were different though, we may have made a different decision.

I completely understand where you are coming from. Before my son's appointment with the Vascular Anomolies Team, I wanted him to start laser treatments ASAP. I changed my mind after the appointment though. I am not sure why, but it just didn't feel right to start laser treatments right away.

Your circumstances are different though and you have to do what's right for your family!

Best of luck to you and your little girl!



kaykay 07-21-2012 10:20 PM

this is your first disappointment and most likely it won't be your last but i hope it is.

first take a breath.

there will be more options. from what i have observes, PWS may be slow at that age so your child is not in any danger. you said her health is ok otherwise, that is really important.

you haven't let your daughter down. The doctor could definitely have a better manner and been more specific. Each case may be different that you read about on the internet. Best thing would be to get another opinion if it will help you feel better.

just remember, she IS ok

tere83 07-22-2012 03:32 AM

Thanks to those who have replied. Its such a relief to find other moms with PWS babies. I don't feel so alone anymore :) we are seeing a different dermatologist in a month and we're hoping she will be able to provide us with more answers than the last guy did. Thank you for not letting me forgett that so far she is healthy and that all her tests were normal, I thank god for that.

kaelinja 07-31-2012 06:47 AM

You don't need a dermatologist, go see a Vascular Malformation Surgeon, they can give FAR more information, treatment options, and prognosis. Dr. Lee (Georgetown University M.D./PHD) in Fairfax Virginia is exceptional. I got more answers from him in 5 minutes than I did from 100+ doctors over 25 years.

Babyshine12 08-23-2012 05:20 AM

Hi I was told the earlier the treatments the better. I need to read about the anesthesia if I decide to do treatments on my daughter what I am thinking about it. I understand you because I have had the same expirince w doctors and how people react to the pws on my baby's face

lisaj 09-02-2012 04:38 AM

I would find a different doctor. I am currently 32 years old and have a port wine stain down my leg. I started laser treatments at the age of 13. I went to an amazing doctor in Chicago (I think one of the only ones in 1993). He had said the sooner the better. He was sorry the technology wasn't around when I was a baby because they prefer to do it earlier. For a few reasons 1)the area is smaller to work on - and they can get a lot more accomplished 2)the older they get often the birthmark will get darker and harder to treat. So sooner the better - not to be rude but the doctor you saw probably doesn't deal with it too much and doesn't know what works best.

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