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-   -   3 month old with PWS-Questions (http://birthmark.org/board/showthread.php?t=2366)

zuzuspetals 05-04-2007 06:34 PM

3 month old with PWS-Questions
 
My name is Katie, and I have a 3 month old daughter with a port wine stain on the left side of her face from the upper lip to the top of her nose, and then over to the temple. I live in the Saint Louis MO area. She has been examined by a pediatric opthamologist, and she is being seen by a pediatric dermatologist, Dr. Bailess, formerly known as Dr. Susan Mallory. She is scheduled for her first pulsed dye laser treatment in June. I just have a couple of questions for those people out there who may know:
1.) the doctor explained that peak lightening would probably occur around 6 treatments. Some people on this forum have stated that they have had quite a bit more than this...is this because of the degree of their PWS, or is it just because they have gone back for further treatments once the PWS re-darkens?
2.) My daughter's PWS is in the V2 region. The MRI has not yet been scheduled - should I put a rush on this with the doctors? She has not demonstrated any sign of seizure.
3.) Does anybody know about Dr. Bailess/Mallory? Is she a good doctor to see?
4.) If the pulsed-dye laser does not achieve any lightening, are there other treatments available? I do not expect her PWS to disappear, but for her sake, I do hope that the treatment does have some effect.
Here is a picture of her, so that you can see what her PWS looks like:

Thanks for any help/answers I might get. I appreciate it.

missy 05-05-2007 03:42 PM

OK, here goes.. I'll do the best I can:

Quote:

1.) the doctor explained that peak lightening would probably occur around 6 treatments. Some people on this forum have stated that they have had quite a bit more than this...is this because of the degree of their PWS, or is it just because they have gone back for further treatments once the PWS re-darkens?
2.) My daughter's PWS is in the V2 region. The MRI has not yet been scheduled - should I put a rush on this with the doctors? She has not demonstrated any sign of seizure.
3.) Does anybody know about Dr. Bailess/Mallory? Is she a good doctor to see?
4.) If the pulsed-dye laser does not achieve any lightening, are there other treatments available? I do not expect her PWS to disappear, but for her sake, I do hope that the treatment does have some effect.
1. The degree of PWS does matter and many adults go in for maintenance treatments.

2. Because the PWS is around her eye, make sure you get her checked often for glaucoma. However, if you already know that she will get an MRI scheduled, I wouldn't push it... I wouldn't forget it, either.

3. I don't ever recall hearing anything bad about Dr Mallory. You might ask Elissa http://www.birthmark.org/experts.php she is the developmental expert, but she lives near you, so she might know if there is a different doctor to see.

4. There are other types of laser available... only rarely have I ever heard PDL as not being effective, though. Best to discuss that with the doctor.

She is really GORGEOUS... congrats on your baby girl. She's so bright-eyed and attentive.... oh, I wish I had a baby again, just to play with! You're very lucky!

Missy

zuzuspetals 05-05-2007 04:04 PM

Thanks for the advice! She IS a doll, I love her to pieces. I couldn't ask for a more perfect little girl.

lishar 05-05-2007 08:35 PM

My daughter has almost the same birth mark. She is almost 4 months old. She will start treatment in August. For the anesthesia she needs to be 6 months old.

She was been ruled out for Sturge-Weber Syndrome. Because it does not go up to her forehead. We are seeing an opthamologist to rule out Glaucoma. She went at 6 weeks and is going again next week.

We just had a test of the laser a few weeks ago. It is encouraging to see some lightening with just one dose. Her dermatologist at Children's Hospital Seattle was encouraged with the bruising from the test dose. She feels that we should get significant inprovement with 6-7 treatments. she is said with early treatment that early studies have shown decreased need for follow up treatments as a child gets older.

I am intrested in reading the answers to your questions too.

Here is a picture of her port wine stain.


Here is a close up of the test dose a week later. You can kind of see the lightening. It still has a bit of a bruise in the picture. The bruse was gone in a week.

zuzuspetals 05-05-2007 09:54 PM

She is a cutie! And I can definitely see the lightening in the area where the laser test was done - that is really promising! Thanks for sharing that. My daughter's PWS does not extend onto the forehead, but she still has to have an MRI to rule out Sturge Weber. Also, she will be 4 months old when she goes under anesthesia...I wonder if this is okay? I know (because I'm a speech-language pathologist) that when children are born with cleft lips, they follow a rule of 10 (age of at least 10 weeks, weight of at least 10 pounds, and hemoglobin of 10). According to this rule, I think she will be okay.
My doctor said that, as far as re-treatment goes, she will probably have to come and get some every few years.
I'm glad things are going so well for your daughter!

momofAddie 05-05-2007 11:44 PM

Hello. I'm encouraged by the comments. My daughter is 5 months old and had her first treatment under general anesthesia 1 month ago. I have lots of pictures (ie. pre and post first treatment) if you are interested in seeing what things look like after. My daughter has a very similiar PWS on her right cheek. We have gotten a little result, but, were told not to expect much after the first treatment. I was curious, what does V2 mean? Is that a rating of the PWS. I can't seem to get a straight answer about my daughter's PWS?..is it high grade, low grade, etc. Does anybody know if it's possible to "rate" them at this young age?
Also, just to let you know, Addie had her MRI at 2 weeks old without anesthesia. She did it for 65 minutes. We tried to keep her up and did not feed her until right before time. They started her IV, which made her mad, of course. She ate and then went to sleep for the entire time. She has also seen the eye doctor. Both SWS and glaucoma were ruled out.
Let me know if you'd like to see the post pics. (I wish I had seen some first, it was a bit shocking)
Good Luck! Those baby girls sure are precious!

Kim
P.S. I am an anesthesia RN if you have any anesthesia/sedation questions, I may could help.

momofAddie 05-05-2007 11:48 PM

Ah hah! Now I've got the V2 answer. Sorry, my brain didn't work there for a second. Does anyone know about the rating though?

thanks,
kim

lishar 05-06-2007 12:50 AM

I don't want to hijack your post but I would love to see some before and after.

I am nervous about the anesthesia. I am not sure what they will use. Maybe gas or propofol.

zuzuspetals 05-06-2007 01:01 AM

I would also like to see the before and afters!

zuzuspetals 05-06-2007 01:02 AM

Also, I don't know about the rating. I just know that the dermatologist said that my daughter's were pretty dark, and that some are just very light pink. But I don't think they look that dark, to be honest with you.


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