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Search: Posts Made By: zuzuspetals
Forum: Port Wine Stain Help and Resources 04-01-2010, 03:08 PM
Replies: 12
Views: 13
Posted By zuzuspetals
e-mail

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

Katie
Forum: Port Wine Stain Help and Resources 03-31-2010, 04:20 PM
Replies: 12
Views: 13
Posted By zuzuspetals
Worried Father, I am a mother of a now three year...

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...
Forum: Port Wine Stain Help and Resources 12-15-2009, 02:37 PM
Replies: 12
Views: 236
Posted By zuzuspetals
I agree that the picture does not exactly look...

I agree that the picture does not exactly look like a port wine stain. More like a brown nevus of some type, but I also thought that it might just be the lighting/camera/etc. Good luck on your...
Forum: Port Wine Stain Help and Resources 12-04-2009, 05:19 PM
Replies: 3
Views: 291
Posted By zuzuspetals
This is regarding your mention of the learning...

This is regarding your mention of the learning disability, from a school-based speech-language pathologist:

If your son demonstrates learning problems in areas other than reading, but only qualified...
Forum: Port Wine Stain Help and Resources 10-14-2009, 07:27 PM
Replies: 5
Views: 407
Posted By zuzuspetals
My daughter Josie is two and has had multiple...

My daughter Josie is two and has had multiple laser treatments on her facial Port Wine Stain. I am a teacher, and my husband works at Home Depot, so we do not have a lot of money, but insurance has...
Forum: Port Wine Stain Help and Resources 10-14-2009, 07:22 PM
Replies: 23
Views: 659
Posted By zuzuspetals
My daughter has a facial PWS. She is two years...

My daughter has a facial PWS. She is two years old, and it is definitely a PWS. It does blanch when pressed. I think that it would be unusual for the blood to not temporarily press out of the area...
Forum: Port Wine Stain Help and Resources 08-24-2009, 05:40 PM
Replies: 9
Views: 1,143
Posted By zuzuspetals
St. Louis doctors

For adult patients with a port wine stain, Dr. Nelson recommended to me Dr. George Hruza in the Saint Louis area.

For pediatric patients, Dr. Susan Bailess and Dr. Elaine Sigfried are both...
Forum: Port Wine Stain Help and Resources 04-14-2009, 04:55 PM
Replies: 6
Views: 1,243
Posted By zuzuspetals
Hi, Karthik. I have not had any experience with...

Hi, Karthik.
I have not had any experience with this, because my daughter is only two, but I have had a lot of help when I contacted the experts on the front page of this website. They are very...
Forum: Port Wine Stain Help and Resources 12-17-2008, 01:53 PM
Replies: 6
Views: 1,198
Posted By zuzuspetals
My daughter Josie is 22 months old. She has...

My daughter Josie is 22 months old. She has pretty well-developed language skills (I like to brag, because I'm a speech-language pathologist!), and has thus been asking about her birthmark and...
Forum: Port Wine Stain Help and Resources 11-10-2008, 06:52 PM
Replies: 2
Views: 759
Posted By zuzuspetals
Eri, Here is a link (I hope it works) to an...

Eri,

Here is a link (I hope it works) to an article on birthmarks.com that lists questions to ask your doctor on the first visit:

http://www.birthmarks.com/HTMLArticle.cfm?Article=171

Hopefully,...
Forum: Port Wine Stain Help and Resources 11-06-2008, 09:14 PM
Replies: 4
Views: 876
Posted By zuzuspetals
I tend to err on the side of caution, and I would...

I tend to err on the side of caution, and I would recommend that you get a second opinion. Most doctors agree, based on research and evidence-based practice, that laser treatment to PWS is more...
Forum: Port Wine Stain Help and Resources 11-05-2008, 06:11 PM
Replies: 9
Views: 1,253
Posted By zuzuspetals
I can tell you that my daugther has laser...

I can tell you that my daugther has laser treatments for her PWS, which is also near her eye. For the first few days, her eye does become very swollen. In the morning, particularly, it can be...
Forum: Port Wine Stain Help and Resources 07-08-2008, 02:53 PM
Replies: 4
Views: 1,162
Posted By zuzuspetals
My daughter's dermatologists have never mentioned...

My daughter's dermatologists have never mentioned any disadvantage to applying too much sun block. I think you are doing exactly what you need to - the more protection, the better! (even for skin...
Forum: Port Wine Stain Help and Resources 06-25-2008, 01:32 AM
Replies: 7
Views: 1,690
Posted By zuzuspetals
Hi! Well, I'm no expert. Just a mom to a little...

Hi!
Well, I'm no expert. Just a mom to a little 18 month old girl with a PWS on her face. However, my understanding is that a PWS is typically treated by a dermatologist. If the PWS causes...
Forum: Port Wine Stain Help and Resources 06-14-2008, 01:53 AM
Replies: 6
Views: 1,283
Posted By zuzuspetals
after the trip

Okay, so I'm back from California, and here is how things went...
Number One: Traveling with a baby is hard. Ha!
Number Two: Working with Dr. Nelson is a pleasure. He was extremely kind and...
Forum: Port Wine Stain Help and Resources 06-03-2008, 03:11 PM
Replies: 5
Views: 1,330
Posted By zuzuspetals
I think it sounds like you are on top of things. ...

I think it sounds like you are on top of things. I think that the medical advice is to "avoid" or "minimize" sun exposure after a treatment - it would be impossible to completely shield our...
Forum: Port Wine Stain Help and Resources 05-22-2008, 12:36 PM
Replies: 6
Views: 1,283
Posted By zuzuspetals
Dr. Nelson

I am going to see Dr. Nelson on June 11th (I am from St. Louis). I will let you know how it goes. I can tell you that they have been extremely helpful and friendly thus far. I have heard a lot of...
Forum: Port Wine Stain Help and Resources 04-30-2008, 06:56 PM
Replies: 7
Views: 1,462
Posted By zuzuspetals
Ha!

Funny - that was you!
Well, that just stinks. It just seems like there has got to be a way to get your hands on some of that stuff. Good luck and let us know if you find a way or an alternative.
Forum: Port Wine Stain Help and Resources 04-29-2008, 12:56 PM
Replies: 7
Views: 1,462
Posted By zuzuspetals
Ask the Expert: EMLA

There is a discussion about this on the birthmarks.com listserv right now. One of the members asked Dr. Nelson on the "Ask the Expert" feature on this page, and this was his response:

I do not like...
Forum: Port Wine Stain Help and Resources 04-11-2008, 12:21 PM
Replies: 9
Views: 1,669
Posted By zuzuspetals
That's interesting about the tylenol not being...

That's interesting about the tylenol not being given before GA. At the Birthmarks Clinic at Saint Louis Children's Hospital, they give my daughter a tylenol/oxycodon (sorry, I'm sure that's spelled...
Forum: Port Wine Stain Help and Resources 03-13-2008, 03:13 AM
Replies: 3
Views: 1,147
Posted By zuzuspetals
Congratulations on your win, and best of luck...

Congratulations on your win, and best of luck with treatments!! Good for you for fighting for your little girl. Let us know how it goes.
Forum: Port Wine Stain Help and Resources 03-13-2008, 03:05 AM
Replies: 6
Views: 1,412
Posted By zuzuspetals
I am sorry that happened to you and your...

I am sorry that happened to you and your daughter! It is amazing sometimes, how much doctors don't know. I think that's why websites like birthmark.org are so important - we get the chance to share...
Forum: Port Wine Stain Help and Resources 02-19-2008, 01:00 PM
Replies: 3
Views: 1,281
Posted By zuzuspetals
information

http://www.birthmarks.com/BirthmarksCMS/Resource/Cynergy%20III%20FAQ%20sheet.pdf

Okay, let's see if that link works...
oprichard, I found this brochure from cynergy at Birthmarks.com. It says that...
Forum: Port Wine Stain Help and Resources 02-19-2008, 01:24 AM
Replies: 3
Views: 1,281
Posted By zuzuspetals
information

I would love to have this information as well. Is there any way we can make it available to all of us, or possibly can the information be forwarded to my e-mail as well?
Forum: Port Wine Stain Help and Resources 02-19-2008, 01:19 AM
Replies: 19
Views: 3,906
Posted By zuzuspetals
answer for grumper - treatment around eye

grumper 1- sorry it took me so long to get back with you on this one - I have been truly busy these days! Josie just turned one on February 13th - I can barely believe things have gone so quickly! ...
Showing results 1 to 25 of 52

 
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