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Search: Posts Made By: robolynn29
Forum: Port Wine Stain Help and Resources 08-01-2009, 12:26 AM
Replies: 3
Views: 1,214
Posted By robolynn29
My daughter has extensive PWS all over her body....

My daughter has extensive PWS all over her body. For the most part, it is very light pink, but does change colors based upon her body temperature and the weather outside.

In the past 4 treatments,...
Forum: Port Wine Stain Help and Resources 12-08-2008, 03:18 AM
Replies: 10
Views: 2,446
Posted By robolynn29
My daughter will be undergoing her 11th treatment...

My daughter will be undergoing her 11th treatment at the end of the month. She is 2 1/2. She has PWS all over her body so there is not an other option other than to put her under GA. I wouldn't have...
Forum: Port Wine Stain Help and Resources 09-26-2008, 02:27 AM
Replies: 8
Views: 843
Posted By robolynn29
I've ordered the book - I think it will be great....

I've ordered the book - I think it will be great. One for our house and one for school. I just didn't know if anyone else has run across something that works well for kids. Most kids afterwards...
Forum: Port Wine Stain Help and Resources 09-25-2008, 07:52 PM
Replies: 8
Views: 843
Posted By robolynn29
Talking to kids

Anyone have any good resources for talking to kids - not just about the birthmark, but the laser results after a treatment. My daughter is at a pre-k and I'm looking for a good resource to hand out...
Forum: Port Wine Stain Help and Resources 09-25-2008, 07:49 PM
Replies: 5
Views: 1,729
Posted By robolynn29
My daughter is 2 and she's had 9 total treatments...

My daughter is 2 and she's had 9 total treatments with the perfecta. She's had amazing results. Her PWS is all over. Most of her face, chest, back, hands, arms, spots on legs and feet. Her arms,...
Forum: Port Wine Stain Help and Resources 01-07-2008, 09:51 PM
Replies: 3
Views: 1,090
Posted By robolynn29
We have been blessed without having to deal with...

We have been blessed without having to deal with the insurance issues. The pediatric dermatology department at TX Children's Hospital takes care of everything for us. In fact, everything is always...
Forum: Port Wine Stain Help and Resources 01-01-2008, 12:05 AM
Replies: 15
Views: 3,002
Posted By robolynn29
Just a quick reply. We have BCBS of Texas and...

Just a quick reply. We have BCBS of Texas and although all claims are denied at first, our doctor's office does ALL the legwork for us to show that the laser treatment is medically necessary.

Make...
Forum: Port Wine Stain Help and Resources 01-01-2008, 12:00 AM
Replies: 3
Views: 1,090
Posted By robolynn29
My daughter is on her 6th treatment and has...

My daughter is on her 6th treatment and has responded really well. Her PWS is very light, but covers the majority of her body. Her dr has said she's had a better response in her visits then others...
Forum: Port Wine Stain Help and Resources 10-18-2007, 03:21 AM
Replies: 2
Views: 1,714
Posted By robolynn29
1. does anyone know about any side effects I'm...

1. does anyone know about any side effects I'm sure each treatment is different. So it depends if they are going to put her under general or just give a sedative. The area will be tender like a...
Forum: Port Wine Stain Help and Resources 10-18-2007, 03:14 AM
Replies: 2
Views: 1,073
Posted By robolynn29
Jen - we've been blessed with early appts as...

Jen - we've been blessed with early appts as well. We live 3 hours from treatment, so we spend the night at a hotel nearby so we get to sleep later. I would feed her right before the 6 hour mark...
Forum: Port Wine Stain Help and Resources 10-18-2007, 03:06 AM
Replies: 3
Views: 1,420
Posted By robolynn29
Thought I would post just from my daughter's...

Thought I would post just from my daughter's experience. I'm sure there are better medical opinions out there though.

1. Is improvement typically visible after after the first few treatments, or...
Forum: Port Wine Stain Help and Resources 10-18-2007, 02:59 AM
Replies: 13
Views: 2,363
Posted By robolynn29
What two cute babies!!! congratulations to both...

What two cute babies!!! congratulations to both of you.

My "baby" is 16 months old and has alot of facial PWS. Her upper lip has been pretty stubborn, but has lightened up significantly - as has...
Forum: Port Wine Stain Help and Resources 08-22-2007, 03:14 AM
Replies: 3
Views: 1,334
Posted By robolynn29
You are in a great city for getting treatment as...

You are in a great city for getting treatment as well. We drive from Austin to Houston to get my daughter treated at the TX Children's Hospital. Since you are only 15, you might also check to see if...
Forum: Port Wine Stain Help and Resources 08-21-2007, 09:25 PM
Replies: 12
Views: 3,221
Posted By robolynn29
I have to say that I have felt many of the same...

I have to say that I have felt many of the same things. I had no idea that my baby would have a birthmark that covers almost all over her body. It was a shock and surprise. I was trying to digest...
Forum: Port Wine Stain Help and Resources 08-21-2007, 09:08 PM
Replies: 3
Views: 1,396
Posted By robolynn29
My daughter has PWS all over her body. She has...

My daughter has PWS all over her body. She has had 4 treatments. Best results have been on her neck, chest, upper back and left arm. Her chest which had been solid pink is now almost completely...
Forum: Port Wine Stain Help and Resources 08-07-2007, 12:59 AM
Replies: 2
Views: 1,277
Posted By robolynn29
Congratulations on a successful first visit. I am...

Congratulations on a successful first visit. I am no means an expert - just a mom whose daughter has extensive PWS. We were told to keep our daughter out of the sun because sun exposure = skin damage...
Forum: Port Wine Stain Help and Resources 08-07-2007, 12:55 AM
Replies: 16
Views: 4,896
Posted By robolynn29
If you look at my above post, you can see the...

If you look at my above post, you can see the before and after pictures. We've had terrific results on her neck, chest, back, arms. We've had decent results on her face, but we knew going into it...
Forum: Port Wine Stain Help and Resources 08-05-2007, 09:35 PM
Replies: 16
Views: 4,896
Posted By robolynn29
Update after laser treatment

Here are some pictures after Montana's 4th treatment. Since her PWS is all over the place, her treatment seems more shocking to people. Here are her pics. Her hand was swollen really bad and until...
Forum: Port Wine Stain Help and Resources 07-28-2007, 07:56 PM
Replies: 16
Views: 4,896
Posted By robolynn29
My daughter has extensive PWS all over her body....

My daughter has extensive PWS all over her body. She has had 3 treatments and will be having her 4th next week. I have noticed a significant different where she has been treated. She has gone from...
Forum: Port Wine Stain Help and Resources 03-06-2007, 03:26 AM
Replies: 9
Views: 1,649
Posted By robolynn29
KCK - I'm in Austin as well. My daughter has...

KCK - I'm in Austin as well. My daughter has extensive PWS all over her body. We see Dr Metry in Houston - she is in the same office as Dr Levy - both are FANTASTIC doctors dealing with PWS.

We...
Forum: Port Wine Stain Help and Resources 02-08-2007, 11:43 PM
Replies: 11
Views: 2,846
Posted By robolynn29
My daughter sees the same one as Erika and our...

My daughter sees the same one as Erika and our treatment is always 3-4 months apart. We do schedule 2 treatments out as well to make sure we are on the books. Our dr has indicated that less than 3...
Forum: Port Wine Stain Help and Resources 01-16-2007, 04:16 AM
Replies: 14
Views: 3,160
Posted By robolynn29
Well, my daughter had her second treatment. Erika...

Well, my daughter had her second treatment. Erika - I did see you once but didn't have a chance to talk to you. Dr. Metry was ecstatic to see the white spots. This treatment was more extensive...
Forum: Port Wine Stain Help and Resources 12-07-2006, 11:53 PM
Replies: 14
Views: 3,160
Posted By robolynn29
You know she doesn't have purple spots anymore,...

You know she doesn't have purple spots anymore, but white ones instead. It is amazing to see the areas that have already improved with one treatment. Because hers is so extensive, we'll be having...
Forum: Port Wine Stain Help and Resources 11-27-2006, 10:07 PM
Replies: 14
Views: 3,160
Posted By robolynn29
Erika!! How funny. We did meet in the elevator...

Erika!! How funny. We did meet in the elevator and I guess I'll see you on January 4th as well. Montana will be getting more treatment done.

How did your daughter's treatment go? I know you were...
Forum: Port Wine Stain Help and Resources 11-27-2006, 10:06 PM
Replies: 5
Views: 1,660
Posted By robolynn29
Ryan - I'm sorry if I'm hijacking your thread....

Ryan - I'm sorry if I'm hijacking your thread.

Lisa - how did you get your insurance to pay for the treatment? My plan says this is cosmetic (just makes me mad).

Robin
Showing results 1 to 25 of 28

 
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