Help - New Parent and PWS..

Jonathan Newton · #1 06-04-2008, 09:01 AM

Hi All,
I was wondering if anybody out there could help me with some questions about my daughter's PWS?.0 She is now two months old and so beautiful but has a PWS covering the right hand side of her face. The mark is not solid and fairly geographical. It covers her forehead cheek and down from the eye to top lip. Since she was born the mark has changed and become ligher in some areas "breaking up " some of the redness.
We are in London and spoke to the Birthmark support group straight away - they are a fantastic organisation and we got referred via our GP to Gt Ormond Street. Again they have been amazing and we started the SW tests - we had her eyes tested (all clear!) nd have an MRI next month.
We have a test lasering in December and have been told that the results are "70% lightening in 70% of patients". I know every case is diffrent (face responds better than rest of body and the younger when treated the better) but could anybody tell me what we really can expect - can we keep ging back to be lasered untill we are happy with the results?. What are the chances of total clearance?.

I will post some photos.

THanks for reading my post!.

Jonathan

missy · #2 06-04-2008, 11:27 AM

We have people struggling on this forum about being happy with the results. I mean, they are doing laser treatments and not getting any MORE lightening, so they wonder if they should keep going in for something that is no longer clearing the pws.

I have also known people who cleared their pws until you almost can't tell at all that they have one.

You sound like you've been proactive from the beginning and THAT is all you can do. Good job!!

Missy

Jonathan Newton · #3 06-04-2008, 11:45 AM

Thanks for the reply - if lasering is not that effective what are the options - I do you use diffrent lasers pr even surgeries untill you find one that is effective or are there any other treatments available outside of lasering?.

Many thanks

nickbar · #4 06-04-2008, 03:30 PM

Hello,

Dr. Stuart Nelson is the VBF ask the expert on PWS and lasering. He has developed many lasers and techniques for improving clearing. I would recommend contacting him for answers on your child's specfiic case and what might be expected.

The first treatment is typically conservative with most specialists. They want to see how the skin will hold up. The darker the purpura the better the clearing...in other words after a tx. if you see a lot of dark, blackish spots...those will be the areas that tend to clear the most. It is possible to get very good clearing, it just depends again on the depth of the malformed capillaries in your baby. Those that have not had good clearing with one laser or reach a point where they can't get more clearing have switch lasers and Dr. Nelson again is the expert on what laser works best for the needs of the patient. He is very good at responding to email. If you need any help getting a reply from him let me know.

Corinne

momofAddie · #5 06-05-2008, 03:32 AM

Johnathan,
My daughter is on her 6th treatment. She has a right sided facial PWS that extends below the right eyelid to the bottom of he lip. The stain goes above her top lip to the midline of her face (just under her nose). We have had good results, but not great. Her lip area has not broken up at all. From what I have heard, the more midline the stain is, the more stubborn it is. Anyway, we just had her 6th treatment on Thursday. I plan to give this laser and doctor this last chance. If we do not get the results I think we need, I plan to contact Dr. Nelson for an opinion. I am willing to go wherever we need to. I know it's hard to decide. From the beginning, I asked if different lasers and techniques were available. I struggled with the decision to go to our specific doctor and try this one first. A friend gave me some good advice...don't go to plan B until you have exhausted plan A. I am following that. Good luck to you! I have my daughter's treatments documented via pictures. Before and after, laser name, and joules used. If you are interested, email me and I will send you the information.

Kim

Superchikk · #6 06-23-2008, 12:59 AM

Our son has had one treatment on his PWS. It is on his left cheek extending from his ear toward his mouth, sort of like a mutton-chop.

We were told by our doctor that she would start with the laser on the lowest setting, and to not expect to see any lightening with the first treatment. However, we have seen quite a difference after the first treatment. Some areas are lighter, and some of the margins have grown smaller.

We are hoping each subsequent treatment will have at least equal results. However, we are taking things one step at a time. That's really the only way we've kept our sanity!